Handbook of the Clinical Psychology of Ageing, Second Edition

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Handbook of the Clinical Psychology of Ageing Second Edition Edited by

Bob Woods and Linda Clare University of Wales Bangor, UK

John Wiley & Sons, Ltd

Handbook of the Clinical Psychology of Ageing Second Edition

Handbook of the Clinical Psychology of Ageing Second Edition Edited by

Bob Woods and Linda Clare University of Wales Bangor, UK

John Wiley & Sons, Ltd

C 2008 Copyright

John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex PO19 8SQ, England Telephone (+44) 1243 779777

Email (for orders and customer service enquiries): [email protected] Visit our Home Page on www.wiley.com All Rights Reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning or otherwise, except under the terms of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London W1T 4LP, UK, without the permission in writing of the Publisher. Requests to the Publisher should be addressed to the Permissions Department, John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex PO19 8SQ, England, or emailed to [email protected], or faxed to (+44) 1243 770620. Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The Publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the Publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. Other Wiley Editorial Offices John Wiley & Sons Inc., 111 River Street, Hoboken, NJ 07030, USA Jossey-Bass, 989 Market Street, San Francisco, CA 94103-1741, USA Wiley-VCH Verlag GmbH, Boschstr. 12, D-69469 Weinheim, Germany John Wiley & Sons Australia Ltd, 42 McDougall Street, Milton, Queensland 4064, Australia John Wiley & Sons (Asia) Pte Ltd, 2 Clementi Loop #02-01, Jin Xing Distripark, Singapore 129809 John Wiley & Sons Canada Ltd, 6045 Freemont Blvd, Mississauga, ONT, L5R 4J3, Canada Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books. Library of Congress Cataloging-in-Publication Data Handbook of the clinical psychology of ageing / edited by Bob Woods and Linda Clare. – 2nd ed. p. ; cm. Includes bibliographical references and index. ISBN 978-0-470-01230-7 (cloth : alk. paper) 1. Geriatric psychiatry. 2. Psychotherapy for older people. I. Woods, Robert T. II. Clare, Linda. [DNLM: 1. Aging–psychology. 2. Aged. 3. Health Services for the Aged. 4. Mental Disorders. WT 145 H235 2007] RC451.4.A5H426 2007 618.97 689–dc22

2007038232

British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN 978-0-470-01230-7 Typeset in 10/12pt Times by Aptara, New Delhi, India Printed and bound in Great Britain by Antony Rowe, Chippenham, Wiltshire This book is printed on acid-free paper responsibly manufactured from sustainable forestry in which at least two trees are planted for each one used for paper production.

Contents

About the Editors List of Contributors Preface 1 Introduction Bob Woods

viii x xv 1

Part One: Ageing 2 Ageing and adaptation Peter G. Coleman, Ann O’Hanlon

17

3 Memory and cognition in ageing Boo Johansson

33

4 Ageing and physical health Valerie Morrison

57

5 Death, dying and bereavement Jan R. Oyebode

75

Part Two: Psychological Problems 6 Manifestations of depression and anxiety in older adults Inger Hilde Nordhus 7 Suicide and attempted suicide in later life Bob Woods 8 Psychological trauma in late life: conceptualization, assessment and treatment Steve Davies 9 Late onset psychosis Linda Clare, Sharon Giblin 10 Dementia as a biopsychosocial condition: implications for practice and research Murna Downs, Linda Clare, Elizabeth Anderson

97 111

121 133

145

vi

CONTENTS

11 The Neuropsychology of dementia: Alzheimer’s disease and other neurodegenerative disorders Robin G. Morris

161

12 Parkinson’s disease Peter Hobson

185

13 Stroke Janet Cockburn

201

14 Sleep and insomnia in later life Kevin Morgan

219

Part Three: Service Context 15 Values and diversity in working with older people Kate Allan

237

16 Family caregiving: research and clinical intervention Steven H. Zarit, Anne B. Edwards

255

17 Residential care Bob Woods

289

18 Elder abuse and neglect Alice Campbell Reay, Kevin D. Browne

311

19 Primary care psychology and older people Gita E. Bhutani

323

20 Ageing, dementia and people with intellectual disability Chris Oliver, Dawn Adams, Sunny Kalsy

341

21 Palliative care for people with dementia: principles, practice and implications Katherine Froggatt, Murna Downs, Neil Small

351

Part Four: Assessment 22 Neuropsychological assessment of the older person Linda Clare

363

23 Assessing function, behaviour and need Adrienne Little, Breid Doherty

385

24 Assessing mood, wellbeing and quality of life Bob Woods

415

25 Capacity and consent: empowering and protecting vulnerable older people Charles Twining

429

CONTENTS

vii

Part Five: Intervention 26 The socio-cultural context in understanding older adults: contextual adult lifespan theory for adapting psychotherapy Bob G. Knight, Cecilia Poon

439

27 Cognitive behaviour therapy with older people Ken Laidlaw

457

28 Psychoanalysis and old age Rachael Davenhill

473

29 Systemic interventions and older people Alison Roper-Hall

489

30 Neuropsychological rehabilitation in later life: special considerations, contributions and future directions Margaret Crossley

505

31 Psychological interventions with people with dementia Bob Woods, Linda Clare

523

32 Interventions for family caregivers of people with dementia Henry Brodaty, Karen Berman

549

33 Challenging behaviour in dementia: a psychosocial approach to intervention Mike Bird, Esme Moniz-Cook

571

34 Interventions at the care team level Dawn Brooker

595

Index

613

About the Editors

Bob Woods has been practising as a clinical psychologist with older people for over 30 years. His interest was activated prior to clinical training by his experience working as a nursing assistant in a long-stay ward for people with dementia. He trained and worked initially as a clinical psychologist in Newcastle-upon-Tyne, where there is a strong tradition of old age research. Subsequently he combined extensive clinical work with older people with academic appointments at the Institute of Psychiatry, London and University College, London. In both settings he was heavily involved in training clinical psychologists in work with older people. In 1996, he was appointed to the first Chair in Clinical Psychology with Older People in the UK, at the University of Wales, Bangor, where he is also Co-Director of the Dementia Services Development Centre Wales, Academic Director of the North Wales Clinical Psychology Programme and Director of the Wales Dementias and Neurodegenerative Diseases Research Network (NEURODEM Cymru). His publications have included over 120 books, book chapters and journal articles, and his research has included studies on both depression and dementia, on assessment and therapeutic approaches, and on family caregivers. He received the Alzheimer’s Society twenty-fifth Anniversary Award ‘for contributions to the Alzheimer’s Society and to the cause of people with dementia and their carers’ in 2004, and the British Psychological Society Division of Clinical Psychology M B Shapiro Award, for a career contribution to the development of clinical psychology in 2006. He continues to work clinically, in the Bangor Memory Clinic. Linda Clare is a chartered clinical psychologist and clinical neuropsychologist. She holds the post of Reader in Psychology at the School of Psychology, University of Wales Bangor, with a concurrent clinical appointment as a consultant clinical psychologist. Her research interests focus primarily on the theoretical and clinical issues surrounding awareness and self-concept, the impact of progressive cognitive impairment on self and relationship and the potential of neuropsychological rehabilitation for people with early-stage dementia. Her current and recent research focuses on the application of cognitive rehabilitation for people with early stage dementia, on the implications and impact of differing levels of awareness in people with early-stage or moderate to severe dementia, and on issues in family caregiving. She has also published a substantial set of qualitative studies analyzing the subjective experience of dementia and the way in which both people with dementia and their family members attempt to adjust and cope at different stages of the disorder. As well as publishing over 70 journal articles, Dr Clare has coauthored a book for patients and families on coping with memory problems, and has authored and coedited texts on

ABOUT THE EDITORS

ix

cognitive rehabilitation in dementia and on disturbances of awareness. She currently serves as Editor for the Cochrane Dementia and Cognitive Impairment Group, is on the editorial board of the journal Neuropsychological Rehabilitation, and contributes to a number of research and professional networks. In 2003 she received the May Davidson Award from the British Psychological Society for her contribution to the development of clinical psychology.

Contributors

Dawn Adams School of Psychology University of Birmingham Edgbaston Birmingham B15 2TT, UK Kate Allan Chartered Clinical Psychologist Edinburgh, UK Elizabeth Anderson Lecturer in Dementia Studies, Bradford Dementia Group School of Health Studies University of Bradford Bradford BD5 OBB West Yorkshire, UK Karen Berman Academic Department for Old Age Psychiatry Prince of Wales Hospital Randwick NSW 2031 Australia Gita E. Bhutani Chartered Clinical Psychologist Professional Lead for Psychological Services Lancashire Care NHS Trust Sceptre Point Sceptre Way Walton Summit Bamber Bridge Preston PR5 6AW, UK

Mike Bird Senior Clinical Psychologist Aged Care Evaluation Unit Southern Area Health Service Queanbeyan New South Wales 2620 Australia Henry Brodaty Professor of Aged Care Psychiatry Euroa Centre Prince of Wales Hospital Avoca Street (Gate 6) Randwick, NSW 2031 Australia Dawn Brooker Professor of Dementia Practice and Research Bradford Dementia Group Division of Dementia Studies School of Health Studies University of Bradford Unity Building 25 Trinity Road Bradford, BD5 0BB, UK Kevin D. Browne Professor of Forensic and Child Psychology School of Psychology Eleanor Rathbone Building University of Liverpool Bedford Street South Liverpool L69 7ZA, UK Alice Campbell Reay Clinical Practice Director/Programme Director University of Glasgow

CONTRIBUTORS

Department of Psychological Medicine Gartnavel Hospital Glasgow G12 0XH, UK Linda Clare Reader in Psychology School of Psychology Brigantia Building University of Wales Bangor Bangor LL57 2AS, UK Janet Cockburn Senior Research Fellow Department of Psychology School of Psychology and Clinical Language Sciences University of Reading Earley Gate READING RG6 6AL, UK Peter G. Coleman Professor of Psychogerontology School of Psychology Shackleton Building University of Southampton Highfield Southampton SO17 1BJ, UK Margaret Crossley Registered Clinical Psychologist Associate Professor and Director of Clinical Psychology Training Department of Psychology 9 Campus Drive University of Saskatchewan Saskatoon, SK S7N 5A5 CANADA Rachael Davenhill Consultant Clinical Psychologist/ Psychoanalyst Adult Department Tavistock Clinic 120 Belsize Lane London NW3 5BA, UK

xi

Steve Davies Deputy Course Director Doctorate in Clinical Psychology University of Hertfordshire Hatfield Campus College Lane Hatfield Hertfordshire AL10 9AB, UK Breid Doherty Formerly of Psychology Department, Maudsley Hospital Denmark Hill London SE5 8AZ, UK Murna Downs Professor in Dementia Studies and Head Bradford Dementia Group Division of Dementia Studies School of Health Studies University of Bradford Trinity Road Bradford, BD5 0BB, UK Anne B. Edwards Purdue University Calumet Indiana USA Katherine Froggatt Senior Lecturer Institute for Health Research Lancaster University Lancaster, LA1 4YT, UK Sharon Giblin Clinical Psychologist Engage Service Staffordshire Youth Offending HQ Beaconside Stafford ST18 OYW, UK Peter Hobson Research Psychologist Academic Unit, Geriatric Medicine Glan Clwyd Hospital Sarn Lane

xii

Bodelwyddan Rhyl LL18 5UJ, UK Boo Johansson Professor of Psychology G¨oteborg University P.O. Box 500 SE-405 30 G¨oteborg Sweden Sunny Kalsy Consultant Clinical Psychologist & Family Therapist Birmingham Learning Disabilities Service South Birmingham PCT 66 Anchorage Road Sutton Coldfield West Midlands B74 2PH, UK Bob G. Knight Merle H. Bensinger Professor of Gerontology Andrus Gerontology Center University of Southern California Los Angeles CA90089 USA Ken Laidlaw Senior Lecturer in Clinical Psychology University of Edinburgh Kennedy Tower Royal Edinburgh Hospital Morningside Park Edinburgh EH10 5HF, UK Adrienne Little Mental Health of Older Adults East Lambeth Community Team South London & Maudsley NHS Trust Maudsley Hospital Denmark Hill London SE5 8AZ, UK Esme Moniz-Cook Professor of Old Age Clinical Psychology University of Hull

CONTRIBUTORS

Coltman Street Day Hospital 39-41 Coltman Street Hull, UK Kevin Morgan Professor of Gerontology Department of Human Sciences Loughborough University Leicestershire LE11 3T, UK Robin G. Morris Professor of Neuropsychology Neuropsychology Unit Institute of Psychiatry. King’s College PO Box 078, Institute of Psychiatry De Crespigny Park London SE5 8AF, UK Valerie Morrison Senior Lecturer School of Psychology University of Wales Bangor Brigantia Building Bangor LL57 2AS, UK Inger Hilde Nordhus Professor of Clinical Psychology Institutt for klinisk psykologi University of Bergen Christiesgt. 12 5015 Bergen Norway Ann O’Hanlon HARP Co-ordinator (Healthy Ageing Research Programme) Dept of Psychology Division of Population Health Sciences Royal College of Surgeons in Ireland Mercer St. Lower Dublin 2, Ireland Chris Oliver Professor of Clinical Psychology School of Psychology University of Birmingham Edgbaston Birmingham B15 2TT, UK

CONTRIBUTORS

Jan R. Oyebode Director Clinical Psychology Doctorate, University of Birmingham Consultant Clinical Psychologist, Older People’s Directorate Birmingham and Solihull Mental Health Trust School of Psychology University of Birmingham Edgbaston Birmingham, B15 2TT, UK Cecilia Y. M. Poon Andrus Gerontology Center University of Southern California Los Angeles CA90089 USA Alison Roper-Hall South Birmingham Psychology Services 208 Monyhull Hall Road Kings Norton Birmingham B30 3QJ, UK Neil Small Professor and Head of Institute for Community and Primary Care Research

xiii

School of Health Studies University of Bradford 25 Trinity Road Bradford, BD5 0BB, UK Charles Twining Formerly of Psychology Department Whitchurch Hospital Whitcurch Cardiff CF14 7XG, UK Bob Woods Professor of Clinical Psychology of Older People Dementia Services Development Centre Wales Ardudwy University of Wales Bangor Holyhead Road Bangor LL57 2PX, UK Steven H. Zarit Professor of Human Development Department of Human Development and Family Studies 211 Henderson Bldg. South Penn State University University Park, PA 16802-6505 USA

Preface

In the preface to the first edition of this handbook, which was published in 1996, one of us (BW) wrote: ‘Clinical psychology with older people has come of age . . . This book aims to celebrate the maturity of clinical psychology with older people, by indicating what has been achieved, and also to move the area onwards . . .’ A decade later, it is less easy to pinpoint the developmental stage that this specialism has reached, and it would be a folly to attribute a role to the handbook, well received as it was, in pushing back the frontiers of knowledge and practice. However, there is no doubt that development has continued apace, that the contribution of clinical psychology with older people is increasingly well recognized and that there is energy and creativity aplenty in this field. There are, no doubt, still uncharted territories in the psychological difficulties faced by older people where clinical psychology has yet to venture and much research and practice development that could be implemented more widely and uniformly, but the rate of progress has been very encouraging. In considering a second edition, it was clear the growth in the field would make the editorial task even greater, and so, to the initial editor’s relief and delight, Linda Clare has joined him. Together, we have added a further five chapters to the 29 in the initial edition, and less than a third of those 29 will be recognizable as (extensively) updated versions of those appearing in 1996. Some topics have remained the same but we have asked different authors to present their approach on this occasion – sometimes through necessity, as with the untimely loss of Tom Kitwood in 1997, sometimes to reflect the diversity of the field and to bring on board authors newer to the field. However, over a third of the chapters in this edition are on topics that were not covered in the first edition, or that were subsumed in other chapters. Thus suicide, late-onset psychosis, assessment of mood and wellbeing, and interventions with care givers all now have chapters in their own right, and palliative care, primary care, Parkinson’s and learning disability in older people are topics covered essentially for the first time. The volume has a similar structure to the first edition, with five sections, covering ageing, psychological problems of later life, the service context, psychological assessment and psychological intervention. The balance between sections is rather different in this edition, with the number of chapters in what was the ‘psychology of ageing’ section reduced by more than half, offering the opportunity for many more practice-related chapters distributed throughout the other sections. This does not reflect a reduced importance of the study of ‘normal ageing’ for the practice of clinical psychology with older people but rather a recognition that such a vast literature needs to be summarized succinctly for the clinician, providing a starting point for more extensive study where that is required. Inevitably, in a book of this nature, there are areas of overlap between chapters. As editors, recognizing that chapters from the handbook are likely to be used as stand-alone sources of

xvi

PREFACE

reference, we have not sought to remove such overlap completely but we have attempted to signpost within the book as to where more detailed coverage might be found. No doubt, there will at times be contrasting viewpoints, as is to be expected in a growing, dynamic field. The first edition became a key reference text for clinical psychologists and clinical researchers working in this area, and generations of clinical psychology trainees welcomed it as a valuable resource. This edition, too, is targeted primarily at clinical psychologists working with older people, as a resource for practice, teaching and research. Clinical psychologists in training and assistant psychologists will find particular topics and chapters of interest and value in relation to their stage of training or the type of work or projects in which they become involved. Other practitioners, teachers and researchers – in psychiatry and medicine of old age, nursing and gerontology, for example – will find coverage of specific areas and topics of relevance and interest to their work. As befits a handbook of clinical psychology of ageing, the majority of the authors are clinical psychologists, with, on this occasion, input from other fields including health psychology, psychology research and old-age psychiatry. This does not reflect a rejection of an interdisciplinary approach but emphasizes the need for a strong input from clinical psychology to provide a firm basis for effective multidisciplinary working. Both editors continue to practice clinically on a regular basis with older people and it is this commitment to bringing research and clinical practice closer together that is an essential part of the philosophy of clinical psychology, which has, we believe, so much to offer to older people and all those who provide care and support for them. This edition continues to have a preponderance of authors from the UK, although, once again, we are delighted to welcome important and significant contributions from researchers in countries such as the US and Australia, where the practice of clinical psychology with older people (although not research) is acknowledged to be less well developed than in the UK and Scandinavia. Although there are some parts of a few topic areas where the UK focus is especially evident, in relation to service development or legal frameworks, for example, the literature and ideas drawn on in the majority of the book are truly international. Although we have aimed to provide a breadth of coverage of the field, inevitably it has not proved possible to be entirely comprehensive; some areas of work are underdeveloped, or, for a variety of reasons, have yet to receive the attention they merit from clinical psychology research and practice. Much remains to be done and, as is documented in Chapter 1, the worldwide growth of the ageing population means that the demand for effective, responsive clinical psychology services for older people will continue to grow for many years to come. Finally, we would like to thank all those who have made this edition of the handbook possible. First and foremost, we are most grateful to all the contributors who have been generous with their time and expertise in complying with editorial requests and have been patient with the delays that accompany such a project. Second, we thank all at John Wiley for their patience and encouragement. Finally, we thank our many colleagues and collaborators who have been a source of support, and our students and trainees for their interest and enthusiasm. Bob Woods Linda Clare

1

Introduction Bob Woods University of Wales Bangor, Bangor, UK

This volume marks the continuing growth and development of clinical psychology with older people. Since the first edition of this handbook was published (Woods, 1996) research activity has continued to increase in relation to all aspects of ageing. Both ‘normal’ and ‘abnormal’ aspects have been extensively studied; the area of overlap between the two has become more evident, although still not well understood. Opportunities to develop clinical psychological services for older people have been apparent in the UK and elsewhere and no longer can the contribution of clinical psychology to services for older people be seen as simply one of ‘promising potential’. There is now ample evidence of psychological practice with older people in a wide range of contexts working with most of the common problems experienced by older people and their supporters. Within the broader family of clinical psychology, work with older adults has, perhaps belatedly, achieved recognition and is less likely to be seen as a rather esoteric, minority interest. This volume stands as witness to a remarkable degree of progress in the field. Although there remain large gaps in the evidence base for interventions with older people, there are now sufficient indications of effectiveness to underpin a number of evidence-based reviews (e.g. Gatz et al., 1998; Livingston et al., 2005; Woods & Roth, 2005) and to inform evidencebased guidelines, such as the NICE-SCIE guideline on supporting people with dementia and their carers (NICE-SCIE, 2006). The latter document includes recommendations on psychological therapies for depression and anxiety in dementia, and for psychological distress experienced by family caregivers, a psychological approach to behaviour that challenges, and psychological interventions, such as cognitive stimulation, to enhance cognition in people with mild to moderate dementia. In addition, it is recommended that a neuropsychological assessment be carried out in all cases of suspected dementia. This volume aims to provide an up-to-date review and synthesis of theory and research evidence relevant to clinical practice. Although there are a number of chapters that specifically address issues relating to dementia, the range of psychological problems experienced by older people is addressed. A brief first section covers the key aspects of the psychology of ageing, as well as providing a health psychology perspective on the physical health problems experienced by older people. This section provides the necessary underpinning for a consideration of psychological problems in later life. Detailed discussion of important aspects of the service context for clinical psychology in later life includes primary care, Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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HANDBOOK OF THE CLINICAL PSYCHOLOGY OF AGEING

residential care and the situation of people with intellectual disabilities. Two sections address the key aspects of clinical practice – assessment and intervention. A wide range of intervention approaches are discussed, for the range of psychological problems, and interventions with family care-givers are addressed in Chapter 16, based on a well-developed model of understanding and assessing the care-giving situation and also in Chapter 32, based on an analysis of the extensive evidence-base. However, for all that has been achieved, it is important to acknowledge some of the challenges that this now-mature specialism will be likely to face in its next phase of development. These challenges arise from several interacting factors. Firstly, there is the nature of the ageing population, which will define the target group for psychological services for older people. Second, there are challenges arising from the position of older people in society, and the diverse experiences of later life that results from a society that has embraced the active older person, but where disability and dependency lead to a risk of social exclusion. Third, there are developments and pressures specifically relating to the profession of clinical psychology, including training and issues of recruitment and service development. Finally, there are personal challenges that arise in working with older people, which are by no means new, but must be encountered by each new cohort of clinical psychologists entering this field.

WHO ARE OLDER PEOPLE? Across the world, there are an unprecedented number of older people. Taking the age of 65 as an arbitrary dividing line, in 1950 there were, according to United Nations statistics (United Nations, 2006), just under 131 million older people in the world, representing 5.2% of the total population; by 2005, there were estimated to be 477 million (7.3% of the total population), and by 2025 older people are projected to form 10.5% of the global population, with 839 million older people – a six-fold increase in 75 years. There are differences in the overall level and rate of change between regions of the world and individual countries. In general, northern European countries were at the vanguard of population ageing, with many parts of Africa showing the smallest proportions of older people. Population ageing is now very rapid in parts of Asia. Table 1.1 shows the changes in the population of people aged 65 and over in five selected countries from 1985–2025. The UK and Sweden represent the northern European countries, which have shown relatively little change over the last 20 years, already constituting over 15% of the population in 1985. The US has also shown relatively little change in this proportion, but has yet to reach the level seen in the UK and Sweden 20 years ago. Australia has had a slightly more rapid growth, but it is in Japan where the most dramatic changes have occurred, with the proportion of older people having nearly doubled in 20 years, almost reaching 20% by 2005. This trend looks set to continue in Japan, with more modest, but clear and important, growth in the population aged 65 and over in the other selected countries too. Table 1.2 indicates the changes over the similar time period in the population aged 80 and over. In the UK and the USA, the numbers of people in this age group are projected to have doubled over the period 1985–2025. Again, Japan is showing the most dramatic rate of change, with 10% of the population projected to be aged 80 and over by the year 2025. Typically, at present, life expectancy at birth is greater for females than males. For example, in the UK, in 2005 it was 80.7 years for women and 76.1 years for men; in Japan,

INTRODUCTION

3

Table 1.1 Population (thousands) and percentage of total population, aged 65 and over in selected countries

1985 1995 2005 2015 2025

UK

US

Sweden

Japan

Australia

8 578 15.2 9 169 15.8 9 684 16.1 11 358 18.1 12 986 19.9

28 423 11.7 33 399 12.4 36 751 12.3 46 355 14.1 63 203 17.8

1 491 17.9 1 542 17.5 1 557 17.2 1 909 20.2 2 155 21.9

12 450 10.3 18 264 14.6 25 255 19.7 33 120 26.2 35 835 29.5

1 588 10.1 2 151 11.9 2 662 13.1 3 600 16.1 4 788 19.6

Source: Population Division of the Department of Economic and Social Affairs of the United Nations Secretariat, World Population Prospects: The 2006 Revision and World Urbanization Prospects: The 2005 Revision, http://esa.un.org/unpp.

it was 85.2 for women and 78.3 for men. This is reflected in women out-numbering men, especially in the higher age groups. For example, in the UK, the sex ratio in those aged 65 to 69 is 1 male to 1.08 women, whereas in those aged 80–84 the ratio is 1:1.62, and amongst those aged 85 and over it is 1:2.47. In the US there are seven times as many female as male centenarians (United Nations, 2006). However, this longer life expectancy may be at the cost of women living more years in poor health. For example, UK figures suggest that expected years lived in poor health from age 65 onwards are 5.8 years for women and 4.3 years for men (Evandrou, 2005). Limiting long-term illnesses are common in the older age groups (see Chapter 4, this volume). Over three-quarters of women (and 70% of men) aged over 85 have such a condition, whereas only around 20% of men and women aged 50–54 are similarly affected (Evandrou, Table 1.2 Population (thousands) and percentage of total population, aged 80 and over in selected countries

1985 1995 2005 2015 2025

UK

US

Sweden

Japan

Australia

1 802 3.2 2 272 3.9 2 685 4.5 3 049 4.9 3 597 5.5

5 916 2.4 7 565 2.8 10 625 3.5 11 958 3.6 14 642 4.1

332 4.0 411 4.7 482 5.3 497 5.3 638 6.5

2 215 1.8 3 881 3.1 6 178 4.8 9 849 7.8 12 929 10.6

267 1.7 466 2.6 712 3.5 944 4.2 1 254 5.1

Source: Population Division of the Department of Economic and Social Affairs of the United Nations Secretariat, World Population Prospects: The 2006 Revision and World Urbanization Prospects: The 2005 Revision, http://esa.un.org/unpp.

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HANDBOOK OF THE CLINICAL PSYCHOLOGY OF AGEING

2005). Among those aged 65–74 and 75–84, 40% and 60% respectively have a limiting long-term illness. However, from a psychological perspective, it is important to note that subjective health is not necessarily poor: 56% of women and 58% of men aged 65 and over with a limiting long-term illness rate their own health as good or fairly good (Evandrou, 2005). The Health Survey for England (2005) reports a number of health indicators for people aged 65 and over (excluding those living in institutional care settings). Arthritis was the most common chronic disease reported by women (reported by 47% of women and 32% of men), whilst for men cardiovascular disease is the most common condition (reported by 37% of men and 31% of women). Two-fifths of older people reported functional limitation in at least one area of activity. For more than half of these, the area of difficulty was being unable to walk 200 yards without stopping or experiencing discomfort. The prevalence of functional limitation increased with age, with around a quarter of men and women aged 65–69 having at least one functional limitation, compared with 65% of women and 57% of men aged 85 and over. Similarly, the proportion having multiple areas of functional limitation also increases with age. Nearly a fifth of women (19%) and 17% of men aged 85 and over report three or more areas of functional limitation, whereas the corresponding figures for those aged 65–69 are 2% and 4% respectively. The risk of falls increases with age, with 43% of men and women aged 85 and over having had a fall in the previous 12 months, compared with 18% of men and 23% of women aged 65-69. Other chronic conditions that were common in the over 65 population included diabetes (13% of men, 10% of women), asthma (10% men, 12% women) and chronic lung disease (9% men, 7% women). Nearly two-thirds of people aged over 65 were hypertensive (62% men, 64% women), in that they either had raised blood pressure at the time of assessment or were taking medication for high blood pressure. It is important to note that of those taking medication, only 50% of men and 45% of women had blood pressure in the acceptable range. Over a fifth of people aged 65 and over had visited their general practitioner in the previous fortnight; this was related to their self-assessment of health, but not to their age. Broadly comparable figures for chronic conditions are reported from the US (Federal Inter-agency Forum on Aging-related Statistics, 2006), for people aged 65 and over (again excluding those in institutions), with lower rates of self-reported hypertension (48% men, 55% women); higher rates of diabetes (men 20%, women 15%); slightly lower rates of asthma (8% men, 10% women); and higher rates of arthritis (43% men, 55% women). Nearly half of men aged 65 and over (48%) reported having some difficulty with hearing, and 14% had some difficulty with vision. For women, the corresponding figures were 34% and 19% respectively. The Health Survey for England (2005) indicated that substantial numbers of older people had little contact with friends (reported by 36% of men and 31% of women) or with family members not living in the same household (reported by 31% of men and 24% of women). A severe lack of perceived social support was reported by 18% of men and 11% of women. Living in areas with limited access to local amenities such as supermarkets and post offices was more likely with increasing age, and was related to poor health in men. Participation in organizations was associated with better health, as was contact with friends and perceived social support for women in the sample. People over the age of 80 appear to be at particular risk from social exclusion on multiple indicators (HM Government, 2006). Thus, they were more likely to live in below-standard housing, experience fear of crime, have difficulty accessing important services, be on a low income, be less likely to meet up with friends,

INTRODUCTION

5

have access to transport, and participate in adult learning, volunteering or other physical and leisure activities. In summary, the clinical psychologist working with older people in the second decade of the new millennium, in a developed country, will be working with many more people in their 80s and 90s than would have been the case 20 years ago. In these age groups, women will outnumber men, of course. Multiple chronic health conditions will be common and these may lead to reductions in the person’s ability to manage day-to-day activities, although they do not necessarily lead to a perception of poor health. Sensory impairments will also be common. A significant minority of older people will not have good social support and may feel isolated from contact with friends and family.

AGEING IN SOCIETY The demographic changes and population projections documented in the previous section reinforce the assertion that we live in unprecedented times. Although areas of the world where population ageing has proceeded at a slower pace may hopefully learn from the experiences of the northern European countries, for example in planning health and social care services, on a global level society has never before included such proportions of older people. Often these changes are viewed as a problem for society as a whole. In the UK, there is near-panic as to how it will be possible in the future to pay for the pensions earned over many years by those who will reach retirement age in the next decade or so. There is equal concern over the projected costs of long-term care to meet the anticipated costs of providing care for increasing numbers of older people predicted to require nursing and personal care and unable to live independently. Equally, these changes provide a great resource to society, of experienced and mature individuals, able to contribute to the workforce directly, or through providing childcare for their grandchildren, allowing others to work, or contributing through volunteer activity, or performing other caregiving tasks for family members and friends. It is these two faces of older people in society, which may be crudely characterized as ‘burden’ or ‘resource’, that reflect the ambivalence experienced at personal, professional and societal levels. We all have a personal investment in ageing and most people wish to avoid an early demise, but there is the concern that increased life expectancy will simply result in a longer period of life lived with disabling health difficulties. Brayne (2007) suggests that there is some limited evidence emerging that ‘compression of morbidity’ is occurring in population studies, with the average period spent prior to death in a disabled state not increasing with increasing life expectancy. It is the fear of this aspect of ageing that Butler (1969) argued gave rise to ‘ageism’, which he described as reflecting ‘a deep seated uneasiness on the part of the young and the middle-aged – a personal revulsion to and distaste for growing old, disease, disability, and fear of powerlessness, uselessness and death.’ Ageism is now often more broadly defined, to include discrimination on the basis of age at any point in the lifespan (Bytheway, 1995) but the original sense of devaluing and distancing from older people and the negative features that have become associated with ageing, remains relevant and raises personal as well as professional issues. It is now also evident that such ageism is not confined to younger and middle-aged people; older people may well bring these powerful feelings to late life.

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This tension is also apparent in the distinction that may be drawn between the ‘third age’ and the ‘fourth age’. The third age of life reflects the period beyond work and employment. It follows on from childhood and working life and allows for many, new opportunities for enjoyment and self-development. The University of the Third Age is well-established and well-known as a virtual learning community, where older people share knowledge, skills and wisdom in the pursuit of learning and development rather than to gain qualifications or degrees. Equally well known are the older people who post-retirement find opportunities for travel and exploration, or who establish themselves in places where previous holidays have been enjoyed. For a proportion of third agers (but by no means all), a good quality of life is attainable, with financial resources and health matching aspirations. There are certainly clear signs of current cohorts of older people making inroads into some of the disempowering forces that surround them, particularly in the roles of consumer and campaigner. The fourth age, on the other hand, takes us again into the arena of disability and poor health, dependency and disease. It includes all the fears of ageing, embodied in Butler’s definition of ageism, which affect older people just as much as they do younger people (although the focus of fear of death in older people tends to be process orientated rather than the fear of nonexistence reported by younger people; see Woods, 1999). It can happen suddenly, such as when a person has a severe stroke, or develop gradually as multiple disorders combine and accumulate to a point where the person is no longer able to maintain a degree of independence satisfying to him/herself. It is not necessarily triggered by a limiting long-term health condition; as mentioned previously, many older people maintain a positive view of their health whilst having such a condition. It happens perhaps when changes can no longer be assimilated into the person’s self-concept as an independent, capable person, and the challenge becomes one of accommodation to receiving help with personal care and daily life, whilst maintaining dignity and individuality. Third age/fourth age transitions are not necessarily irreversible; there may be recovery from a stroke or mobility may be regained following an operation for fractured neck of femur, for example, but the fourth age is a period of great vulnerability. Maintaining control over even small aspects of daily life may become difficult; feelings of powerlessness and frustration may arise in situations where help must be asked for and received in carrying out activities that were previously easily accomplished. Decision making may seem to be taken over by others, and major decisions, such as moving into a care home, appear to have to be made quickly, at a time when all the consequences may not be clear. As one older person commented to the author regarding the process of being discharged following an acute admission to hospital: ‘I was offered a choice of what care home I went to, but I wasn’t offered the choice of going back home.’ Finding meaning and purpose in the fourth age is probably the greatest remaining challenge for gerontology. There is now no question that those older people who have reasonable health, economic and social resources can, and usually do, have a satisfying and fulfilling later life. Those who, for whatever reason, are less fortunate in these respects, will have a more difficult task in maintaining wellbeing in the final chapter of their lives (see also Chapter 2, this volume) as they face social exclusion and disempowerment. These considerations illustrate something of the diversity of the experience of ageing. Conventional, but arbitrary, age thresholds for pensions, retirement, services or benefits, such as 60, 65 or even 75 mean that people with a range of ages of at least 25 to 40 years are being grouped together. An important gerontological finding is the greater variance shown by older people in many areas of life (e.g. Rabbitt, 2006). Older people have had longer

INTRODUCTION

7

to follow their own developmental path, to develop different skills, interests, motivations, preferences and abilities and to have different life experiences, and so may be more different from each other than groups of younger people. The influence of cohort effects is a further key aspect of gerontological research (see Chapter 3, this volume) which contributes to diversity. The 70 year old today is in a very different position from the 70-year-old person of 1980, in terms of life experiences, position within society and expectations of their phase of life. Each generation of older people brings to later life its own history and values and will accordingly influence and be influenced by the social culture of the time. Add to this differences arising from cultural and spiritual background, ethnicity, sexuality and gender, and the diversity is evident (see Chapter 26, this volume). Different individuals will have unique narratives of their lives, a life story to tell. They will have witnessed and been influenced by many changes in the socio-cultural-political environment, in technology, in the media, in world view, but the story will be fundamentally rooted in a network of relationships, varying in depth and nature. The movement away from the use of terms such as ‘the aged’ and ‘the elderly’ reflects the realization that generalizations about such a diverse population are of dubious validity. Our preferred term ‘older people’ is remarkably vague, of course, potentially encompassing almost the whole population. However, discrimination on the basis of age is now becoming the subject of the same scrutiny as racism and sexism, for example, in relation to employment and the provision of healthcare and social care services. There is an interesting paradox, in that, in both England and Wales, a National Service Framework for Older People has been published (Department of Health, 2001; Welsh Assembly Government, 2006), each setting the explicit target of rooting out age discrimination; however, these are the only National Service Frameworks for a population, rather than a disease or group of diseases, as if being older is, in itself, a disorder to be treated. Age appears in so many ways to be such a useful metric (as was evident in many of the statistics quoted in the previous section). It has so many strong and powerful associations that it is tempting to, irrationally, impute to it explanatory power. For example, suppose there is a medical procedure for some condition, which is ineffective if the person also happens to have arthritis; research might show it to be ineffective in nearly half of older women (see prevalence of arthritis cited previously); its effectiveness would be shown to be less in older people, but to deny it to people on the basis of age would, of course, be illogical. The important criterion would be presence/absence of arthritis, whatever the person’s age. Brayne (2007) describes age as being ‘the elephant in the room’, a large, overwhelming presence, which makes it difficult to see any of the other factors that may also be present. Age is simply a convenient summary of numerous processes occurring over time; it is clearly not a single, unitary process in its expression in older people. Until this is fully recognized, dealing with age discrimination will be extremely difficult, as it will have the aura of rationality and common sense. A clinical psychology of ageing must be responsive to the dynamic tapestry produced by the interaction of cohort effects, temporal changes and the myriad of processes occurring to the individual over time, which are conveniently subsumed under the umbrella term ‘ageing’. The key point here is that no part of the overall picture is static: older people, the social, historical, political and economic context, the pattern of services. All are dynamically interrelated; mismatches between expectations and reality are inevitable when so much change occurs so quickly. A good example of the interaction between social expectations and psychological function was provided by Levy and Langer (1994). In a cross-cultural

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study involving groups from the US and China, it was shown that memory performance in later life was related to positive views of ageing. In cultures where older people were respected and valued there was less apparent decline in cognitive function with age. The older person cannot and must not be studied in isolation from their context; they are enmeshed in a presumptive world order, rich in accumulated experiences and expectancies.

CLINICAL PSYCHOLOGY WITH OLDER PEOPLE In the UK, the development of a specialism in clinical psychology with older people can be traced back to the late 1970s. Prior to this, there were a few individual clinical psychologists in posts working with older people, and some pioneering examples of clinical psychological research on older people and the dementias (e.g. Savage et al., 1973; Shapiro et al., 1956; Whitehead, 1973). Then in 1977, the Trethowan report on the future organization and development of clinical psychological services was published by the government’s health ministry, and identified work with older people as a distinct speciality within area psychological services. This initiative encouraged the development of posts in each area, heading up this new specialism. These posts were often encouraged and supported by the pioneering old-age psychiatrists, who were already building from a base of institutional provision for older people with mental health problems to establish new services, outreaching to the community, setting up day hospitals and showing the importance of visits to the person’s home. By 1979, a momentum was developing for the isolated practitioners in this field to come together for mutual support and to make common cause. In the Bulletin of the British Psychological Society (BPS) of that year there was an article on ‘psychological services and the elderly’ (Mumford & Carpenter, 1979), and two letters on this topic. The first, from John Hodge, described how a small group of psychologists in Scotland, all working with older people, were meeting regularly; the second, from Jeff Garland, sought interested people to make contact, with a view to establishing a similar group in England. The following year, with the encouragement of Age Concern England and the BPS Division of Clinical Psychology, ‘PSIGE’ (Psychologists’ Special Interest Group in the Elderly), as it came to be known, had its inaugural meeting. It quickly established itself as a valuable source of support and communication between those interested in this work, most of whom worked in isolation, often with colleagues who were rather bemused as to why anyone would choose to work with older people. A regular newsletter, an annual conference and regional groups quickly became the pattern of activity, which has continued to the present time. Psychologists’ Special Interest Group in the Elderly became formally part of the British Psychological Society Division of Clinical Psychology (DCP) and was instrumental in ensuring that work with older people became a mandatory component of UK training in clinical psychology. It is now a Faculty of the DCP, and although retaining the acronym PSIGE, it is now known as ‘Psychology Specialists Working with Older People’. By the 1990s, training programmes in the UK were seeking to ensure that all trainee clinical psychologists had clinical experience with older people, as well as academic teaching covering the area. At the same time, the number of training places began to increase, and those clinical psychologists working in the field worked extremely hard to attempt to provide sufficient clinical placements, so that all trainees could have a full placement, rather than gaining more limited experience with a small number of older clients. Although many additional posts were established at this time, there were continued difficulties in recruiting

INTRODUCTION

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psychologists to work in this area, thus compounding the shortage of qualified psychologists able to provide training placements. By 2002, the shortage of clinical placements in work with older people was seen as the major obstacle to increasing further the numbers of training places in clinical psychology as a whole. A substantial increase was perceived to be required to meet the needs of the National Health Service (NHS) for clinical psychologists to work in a range of specialist areas, with many vacant posts, and training courses not keeping up with the demand for additional posts from the service. This led to a dilution of the placement requirement, so that whilst experience across the life-span continues to be compulsory, a specialist older adult placement is no longer required. Older people might be seen, for example, whilst on a neuropsychology or health psychology placement. PSIGE continues to be committed to providing as many training placements as possible, so that the majority of trainees have a good quality specialist placement. At the time of writing, less than five years after this action was taken, the total number of training places is falling once again, as a particularly severe NHS funding crisis means that, for the first time in many years, expansion of clinical psychology services has been halted, and clinical psychologists finishing their training are finding some difficulty in obtaining an NHS post in the area and specialism of their choice. This is in the context of increased demands for evidence-based psychological therapies in the NHS, and so may be a temporary setback. However, it seems unlikely that mandatory placements (in any area of work) will be reintroduced. There is now a greater emphasis on core competencies, transferable skills, a wide range of experience and individual training pathways, rather than all trainees having specified placement experience. However, all trainees continue to have academic teaching in relation to older people. PSIGE has had an important role in setting out the parameters of training in work with older people, both in relation to clinical experience and academic teaching. The suggested syllabus for the academic component (PSIGE, 2006a) is 1. General issues in ageing 2. Normal ageing and the impact of life events 3. Physical and psychological disorders in older people 3.1 Understanding dementia and related disorders 3.2 Presentation of dementia and related disorders 3.3 Assessment of people with dementia and related disorders 3.4 Psychological problems in later life 3.5 Physical health in old age 4. Service provision 5. Intervention approaches and clinical skills development 5.1 Interventions in the early stages of dementia 5.2 Interventions in the later stages of dementia 5.3 Rehabilitation 5.4 Cognitive-behavioural approaches 5.5 Other psychological therapies and approaches In the US there have been similar pressures on supervisory resources and the same difficulties in ensuring that a meaningful experience in work with older people is obtained (Knight et al., 1995). The development in 1993 of a specialist group – a Section on Clinical Geropsychology (Section II) of the Clinical Psychology Division of the American Psycho-

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HANDBOOK OF THE CLINICAL PSYCHOLOGY OF AGEING Table 1.3 New cases seen by clinical psychologists in NHS, England, 2002/3 (rate per 1000 population)

All ages 0–4 5–15 16–54 55–64 65–74 75–84 85 and over

All

Male

Female

3.8 2.2 3.4 4.5 3.3 2.6 2.7 2.5

3.5 2.8 4.0 3.7 3.0 2.4 2.7 2.8

4.1 1.7 2.7 5.2 3.6 2.7 2.8 2.3

logical Association – has given a focus to initiatives to develop specialist training in this area. Qualls et al. (2002) report on the results of a survey of 1,227 practitioner members of the American Psychological Association and found that whereas only 3% viewed older people as their main professional focus, as many as 69% reported currently providing some psychological service to older people, although the median provision was less than 3 hours per week. The survey indicated that 40% wanted to increase their involvement, and showed a great need for continuing education provision in relation to older adults. Psychologists had received relatively little training previously, with relatively little growth in the amount of training in work with older adults having occurred. In Australia, a reluctance to work with older adults is noted by Koder and Helmes (2006). Their survey of 500 psychologists suggested that supervised practice is helpful. A special interest group on ageing in the Australian Psychological Society was inaugurated in 2005, with increased psychological provision for older people amongst its aims. Similarly in the US, Qualls et al. (2002) conclude that older people are not receiving the access to psychological services that their level of need would indicate, with level of provision growing slowly. In the UK, Woods and Roth (2005) examined whether older people are experiencing age discrimination in terms of access to clinical psychology services. Taking initial contacts with clinical psychologists in England as a crude index, in 2002/2003, only 11% were with people over 65, despite them forming approximately 16% of the total population; a person aged 16–54 was 1.7 times more likely to have an initial contact with a clinical psychologist than someone aged 65+ (Department of Health, 2003). Table 1.3 indicates that only infants up to the age of four are less likely to be seen by a clinical psychologist. It is worth considering why older people do not receive equitable access to psychological services. Given the high prevalence of dementia in the over-75s, additional to the common mental health problems that affect adults of all ages, one might predict the need for psychological service would be greater. There may be cohort effects, with current older people perhaps not being so familiar with psychological treatments but other possible factors must include lack of recognition of psychological problems in older people and failure to refer on for specialist input, as well as underprovision of specialist services. Psychology Specialists Working with Older People has also been instrumental in producing guidance regarding the appropriate levels of psychological service provision for older people, for example in the document Commissioning Clinical Psychology Services for Older People, Their Families and Other Carers (PSIGE, 2006b). This document

INTRODUCTION

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argues that clinical psychologists specializing in work with older people should be core members of:

r Secondary mental health care services for older people r Services for younger people with dementia r Services for people who have had a stroke r Services for people who are at risk of falling r Intermediate care services r General hospital care for older people The roles envisaged in each area include direct clinical work, indirect clinical work (with paid care-workers and other staff), teaching and training, service development and research and evaluation. For a catchment area population of 250,000 people (with 45,000 older people), this model envisages a team of nine psychologists, including some at assistant level. It is argued that specialist services such as addictions, eating disorders, traumatic stress and forensic services should accept older people as clients with no age cutoff, with support from older adult psychology services as required. Primary care counselling and psychological therapy services, it is suggested, should either be provided by a properly resourced service for adults of all ages, or a separate primary care psychology service for older people. Whichever option is taken, there should be provision to meet the complex needs of older people, including home visits, longer periods of intervention and extensive liaison with other agencies (see PSIGE, 2002 and Chapter 19 of this volume). Needless to say, such a level of provision would require a dramatic increase in most areas of the UK. The debate regarding the best model of provision for primary care services reflects perhaps the most challenging issue currently facing clinical psychology with older people in the UK. This relates to the extent to which specialist older adult psychologists are required. The argument can be made that having insisted that all clinical psychologists prior to qualification have experience and training in working with older people, there is no reason why a clinical psychologist working in, say, an adult mental health team should not see adults of all ages. Why should a 63-year-old person with depression be referred to an ‘adult’ clinical psychology service, while someone who is 65 is referred to an ‘older adult’ psychology service? Is this not simply a good example of age discrimination, which must be tackled and removed? There is no doubt that the success of providing good quality clinical placements in assisting recruitment to older adult posts, may have been at the expense of maintaining a distinct specialism. In some parts of the UK, perhaps as a cost-cutting exercise, the specialist psychology service for older people has been put under threat, being replaced by services ‘for adults of all ages’. There is widespread concern that pioneering and highly valued services that have taken years to establish and develop will be swept away in the apparently worthy pursuit of removing discriminatory practice. The crux of the difficulty is, of course, any inflexible use of an arbitrary age cutoff, which must always lead to discriminatory practice. Avoidance of such cutoffs means that services should be offered on the basis of clinical need. This in turn requires some specification of what profile of clinical need requires a specialist older adult service. This might, for example, include the dementias whatever the age of onset and perhaps depression complicated by physical health and/or complex social needs. Additionally, service choice can be offered to the older person, who

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may have strong feelings about not being treated by an ‘older person’s service’, or may prefer to have a service that specializes in problems associated with later life. There will also be a need for an enhanced consultative role with less experienced colleagues, in relation to their work with older people, where developmental and lifespan issues would need to be addressed. However, ageism is such a constant threat that older adult specialists must ensure that older people do not experience indirect discrimination when all-age services do take responsibility for their care. This can be attempted through monitoring of referral and treatment rates and comparing with the age distribution in the population. As the official referral figures quoted above indicate, older people are far from being in a fair position currently.

PERSONAL ISSUES Lee, Volans and Gregory (2003) surveyed 371 clinical psychology trainees in the UK and identified a number of rewards and challenges in relation specifically to working with older people. The emotional impact was evident and included feelings of hopelessness, feeling overwhelmed by the situations experienced by some older people and being confronted by older people’s experiences of multiple loss. More positively, trainees found the work rewarding in that they discovered that they could make a real difference to the older person’s life and that their attitudes to their own ageing became less negative as they discovered that older people were not ‘an alien species’; skills and abilities learned with other client groups were, they discovered, applicable with older people. Some trainees have had very little previous contact with older people and may bring to the placement a whole host of negative stereotypes and expectations. Placement experiences where these matters can be freely and openly discussed with an experienced supervisor are an essential part of training to work with older people. A prime reason for placement experience being a vital component of training to work with older people is the opportunity it provides to dispel the mythology that surrounds ageing and older people. However, the opportunity to address issues of therapeutic hopelessness and impotence, to be faced with real adversity and to witness the impact of multiple losses all provide invaluable developmental experience for the aspiring clinical psychologist. Continued postqualification supervision is just as necessary, of course. The exposure to ill health and death can interact with the psychologist’s own fears and concerns, perhaps in relation to parents or grandparents and their mortality. It can be very difficult, for example, to lose a relative at an untimely young age, and then be working with an 85 year old who expresses a wish to die but continues to have life. Issues of transference and countertransference (see Chapter 28, this volume) in a therapeutic relationship where the client is typically older than the therapist may show a pattern of development as the therapist’s life situation changes – perhaps from the comfortable and productive position of the favourite grandchild to the more uncomfortable situation of the adult child, where conflicting goals, and assertions of parental authority are more evident. There are many areas for supervision to address; for example, self-disclosure is one of a number of boundary issues that frequently arise in working with older people; should older people’s questions about the psychologist simply be seen as a natural (and sensible) curiosity about the abilities of a person 50 years their junior to make an intervention in their life, and receive a factual response; or, should they be seen as an aspect of the therapeutic process, to be analysed and probably not directly

INTRODUCTION

13

answered? The clinical psychologist needs to be comfortable in discussing taboo topics with the older person: discussion of death and dying, religion and spirituality and sexuality are too often avoided, and yet each may have great salience for many older people. Again, these are areas where supervision can be helpful, especially where the person’s views and beliefs are difficult for the psychologist to hear. For some psychologists, the range of work possible with older people is one of the attractions. To carry out a neuropsychological assessment, work with an older person on adjusting to a health problem, work psychotherapeutically with another client and then advise a care home on a behavioural programme all in the space of one working day or two can be very satisfying but it requires a great many competencies. For some psychologists the feeling of being ‘a jack of all trades and a master of none’ is frustrating; in a sense, for them, the work is not specialized enough. Working with older people typically has been a place for the all rounder. It may be that as services for older people become more developed there will be greater scope for specialization, with the acquisition of further training and skills after qualification. Finally, this handbook takes a fundamentally positive view of ageing and working with older people. It espouses a wide range of interventions for the diverse problems experienced by older people and stands in marked contrast to the therapeutic nihilism that surrounded work with older people within living memory. However, it is important to emphasize that blind optimism can be just as damaging. Not all difficulties can be fixed; some negative thoughts are not distortions but a realistic appraisal; some situations have to be endured. The goals of intervention that are important for the client may seem small and insignificant to the therapist but are nonetheless, meaningful in relation to the person’s quality of life. This person-centred perspective, taking time and trouble to hear people’s own perspective, to understand their meanings and motivations, to hear their story, must be at the heart of a clinical psychology of later life that has value and worth.

ACKNOWLEDGEMENT The content of this chapter has been informed by the corresponding chapter, written by Peter Britton and Bob Woods, in the first edition of this handbook (1996).

REFERENCES Brayne, C. (2007) The elephant in the room – healthy brains in later life, epidemiology and public health. Nature Reviews Neuroscience, 8, 233–9. Butler, R.N. (1969) Age-ism: another form of bigotry. Gerontologist, 9, 243–46. Bytheway, B. (1995) Ageism. Open University Press, Buckingham. Department of Health (2001) National Service Framework for Older People. Department of Health, London. Department of Health (2003) Summary of Clinical Psychology services – Form KT24. DH Statistics Division (SD3G) Available from www.doh.gov.uk/public/kt240203/#tables (accessed 5 January 2004). Evandrou, M. (2005) Health and Well-being amongst Older People in Britain at the Start of the Twenty-first Century. ESRC SAGE Research Group, London School of Economics, London. Federal Inter-agency Forum on Aging-related Statistics (2006) Older Americans Update 2006: Key Indicators of Well-being. Available from www.AgingStats.gov.

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Gatz, M., Fiske, A., Fox, L.S., et al. (1998) Empirically validated psychological treatments for older adults. Journal of Mental Health and Aging, 4(1), 9–46. Health Survey for England (2005) The Health of Older People: Summary of Key Findings. The Information Centre, Leeds. Available from www.ic.nhs.uk. HM Government (2006) Independence and Well-being of Older People: Baseline Report: A Social Portrait of Ageing in the UK. Corporate Document Services, London. Knight, B.G., Teri, L., Wohlford, P. & Santos, J. (eds) (1995) Mental Health Services for Older Adults: Implications for Training and Practice in Geropsychology. American Psychological Association, Washington DC. Koder, D.A. & Helmes, E. (2006) Clinical psychologists in aged care in Australia: a question of attitude or training? Australian Psychologist, 41, 179–85. Lee, K., Volans, P.J. & Gregory, N. (2003) Attitudes towards psychotherapy with older people among trainee clinical psychologists. Aging & Mental Health, 7, 133–41. Levy, R. & Langer, E. (1994) Aging free from negative stereotypes: successful memory in China and among the American deaf. Journal of Personality and Social Psychology, 66, 989–97. Livingston, G., Johnston, K., Katona, C. et al. (2005) Systematic review of psychological approaches to the management of neuropsychiatric symptoms of dementia. American Journal of Psychiatry, 162(11), 1996–2021. Mumford, S. & Carpenter, G. (1979) Psychological services and the elderly. Bulletin of the British Psychological Society, 32, 286–8. NICE-SCIE. (2006) Dementia: Supporting People with Dementia and their Carers in Health and Social Care: Clinical Guideline 42. National Institute for Health and Clinical Excellence, London. PSIGE (2002) Clinical Psychology Services for Older People in Primary Care: Occasional Paper 4. Division of Clinical Psychology, British Psychological Society, Leicester. PSIGE (2006a) Good Practice Guidelines for UK Clinical Psychology Training Providers for the Training and Consolidation of Clinical Practice in Relation to Older People. Division of Clinical Psychology, British Psychological Society, Leicester. PSIGE (2006b) Commissioning Clinical Psychology Services for Older People, their Families and Other Carers: Briefing Paper 5. Division of Clinical Psychology, British Psychological Society, Leicester. Qualls, S.H., Segal, D.L., Norman, S. et al. (2002) Psychologists in practice with older adults: current patterns, sources of training, and need for continuing education. Professional Psychology: Research and Practice, 33, 435–42. Rabbitt, P. (2006) Tales of the unexpected: 25 years of cognitive gerontology. Psychologist, 19(11), 674–76. Savage, R.D., Britton, P.G., Bolton, N. & Hall, E. (1973) Intellectual Functioning in the Aged. Methuen, London. Shapiro, M., Post, F., Lofving, B. & Inglis, J. (1956) ‘Memory function’ in psychiatric patients over 60: some methodological and diagnostic implications. Journal of Mental Science, 10, 232–46. United Nations (2006) World Population Prospects: The 2006 Revision and World Urbanization Prospects: The 2005 Revision, Population Division of the Department of Economic and Social Affairs of the United Nations Secretariat. Available from http://esa.un.org/unpp (accessed 13 August 2007). Welsh Assembly Government (2006) National Service Framework for Older People. Welsh Assembly Government, Cardiff. Whitehead, A. (1973) Verbal learning and memory in elderly depressives. British Journal of Psychiatry, 123, 203–8. Woods, R. (ed.) (1996) Handbook of the Clinical Psychology of Ageing. Wiley, Chichester. Woods, R. (1999) Mental health problems in late life, in Psychological Problems of Ageing: Assessment, Treatment and Care (ed. R.T. Woods). Wiley, Chichester, pp. 73–110. Woods, R. & Roth, A. (2005) Effectiveness of psychological interventions with older people, in What Works for Whom? A Critical Review of Psychotherapy Research, 2nd edn (eds A. Roth & P. Fonagy). Guilford Press, New York, pp. 425–46.

PART ONE

Ageing

2

Ageing and adaptation Peter G. Coleman University of Southampton, UK

and Ann O’Hanlon Royal College of Surgeons, Ireland

INTRODUCTION Biologically, ageing is defined as a deteriorative process. Socially too, ageing appears as a time of loss of roles and relationships. Thus it is not surprising that consideration of adjustment should have such a prominent role in the psychological study of ageing. However, as research findings have accumulated it has become clear that adults in later life are not as anxious, depressed or fearful as might have been expected (Kunzman, Little & Smith, 2000; Thompson, Itzin & Abendstern, 1990). This is evident both from longitudinal and cross-sectional studies. For example, asking 300 older (mean age 74 years) and 300 younger people (mean age 24 years) in Germany to carry out sentence-completion tasks, Freya Dittmann-Kohli (1990) discovered that older participants were more positive toward themselves than younger participants. Younger people were typically more derogating and harsh towards themselves by comparison with older people, even in regard to physical appearance where one might expect younger people to think that they had a distinct advantage. The perspectives on ageing of Erikson (1950), Jung (1972) and those who followed them in elaborating normative stage theories of adult development were in part a reaction against the negative stereotypes of ageing predominant in the late nineteenth and early twentieth centuries. Their response was to propose positive models of ageing. Both views assumed a large degree of generalized age changes. The dominant school of life-span developmental psychology that has developed over the last thirty years in North America and Europe has come instead to emphasize differential ageing as well as the influences of societal and historical factors on age-related expectations (Baltes, 1987; Dannefer, 1988) (for general accounts of life-span developmental psychology see Heckhausen, 2005 and Sugarman, 2001). Thus it has become possible to understand better why it is that some older adults do show characteristics similar to the negative stereotypes of age whereas others age much

Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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more positively. This has led to the coining of such terms as ‘normal’, ‘pathological’, and ‘optimal’ or ‘successful’ ageing. The last term – ‘successful ageing’ – refers to optimal physical, psychological and social possibilities for living, to an experience of ageing where health, activity and role fulfilment are better than that found within the population generally (Rowe & Kahn, 1998). Within this framework, researchers are interested in finding ways in which adults can not only offset problems or challenges but also function to maximum potential in their later years (Baltes, 1987; Baltes & Baltes, 1990). Death is seen to occur at the end of a full and active life, in ways comparable to a clock that simply stops ticking. The opposite model of pathological old age assumes a much more pessimistic outlook for the self in which increasingly poor health and lower levels of psychological and social functioning can be expected. This would include ageing with dementia. It is clear that many factors, both biological and social, influence the experience of ageing (Rowe & Kahn, 1998). European sociologists following Townsend (1981) have come to refer to the structured dependency of older adults (Walker, 1999). For instance, retirement from paid work is very often forced upon older adults in such a way that it weakens both their financial and social status. The current emphasis of policy within the EU has switched in recent years to ‘productive ageing’, by which is meant keeping people longer in the labour market. Whether this is intended primarily to benefit older people rather than to combat ever increasing pension costs is doubtful. Older people have often been the passive victims of abrupt changes in public policy. The collapse of pension values in the former Soviet Union is a recent extreme example of political change gravely affecting older people’s quality of life. There are probably limits to optimizing the experience of ageing. Certainly in the near future it is hard to imagine that later life will not continue to be marked by physical, psychological and social losses. However, gains and losses accompany each other throughout the lifespan (Baltes, 1987; Dannefer & Perlmutter, 1990) and it is in studying the interaction between them that most insight can be gained into the nature of development. As far as later life is concerned this means a better understanding of strategies of adaptation and coping. Successful adaptation and coping with the stresses and changes of life are principal markers of mental and emotional health in people of all ages. The psychology of ageing has been defined by Birren and Schroots (1996) in terms of the ability of the individual to adapt to changing circumstances during adulthood. Many adults have concerns about their own future old age and death. That such potential worries are managed – even to the limited extent of avoiding thinking about such topics – is important if individuals are to maintain a sense of wellbeing. Health professionals also, if they are to help their clients, need to be aware of the strategies that can be used to create a sense of control, predictability, and safety. Learning about the different possibilities for adaptation is likely to be useful in helping older adults who are adapting less well.

THEORIES OF ADAPTATION TO AGEING Strong claims have been made by various theorists (Baltes & Baltes, 1990; Birren & Schroots, 1996) for adaptability, the potential and preparedness for dealing with a variety of demands, as a criterion of successful ageing. In the contemporary Western world such a measure appears more acceptable as an objective criterion of successful ageing because it

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does not imply a single outcome but rather the ability of the system to meet demands. It includes a range of characteristics, involving cognitive as well as social abilities. The importance of adaptability was emphasized much earlier in the history of gerontology, in the pioneering writings of Anderson, for example, who approached the study of ageing after a career working on child development (Anderson, 1956). Anderson stressed that in the course of our development we purchase efficiency at the cost of versatility and that the regressive processes to be found in extreme old age simply represent the cumulative effect of all the restrictive choices made in the past which cause an increased reliance on habit. Kastenbaum has also referred to ageing as ‘habituation’, a decreasing attention to repetitive stimuli in one’s life: ‘what we recognize as “aging” or “oldness” ’ is the emerging tendency to overadapt to one’s own routines and expectations rather than to adapt flexibly and resourcefully to the world at large’ (Kastenbaum, 1984, p. 105). In contrast to these pessimistic pictures of the lifespan, other theorists consider how adaptivity may be preserved in the course of ageing, and how it may be enhanced with the strengths that come from the increased expertise, specialization and individuality of age (Baltes, 1987). The most well articulated and investigated model of this type is the model of selection, optimisation and compensation (SOC) developed by Paul and Margaret Baltes (Baltes & Baltes, 1990; Freund & Baltes, 1998). This theory provides a prototype strategy of successful ageing, of adapting to the constraints and losses of later life by optimizing favourable outcomes for the self.

Selective Optimization with Compensation The strategy, as its name suggests, involves three components. ‘Selection’ refers to the adaptive task not only of the person but also of the society – in this way Baltes follows Erikson in emphasizing the reciprocal character of development – to concentrate on those domains that are of high priority to the individual and that suit their skills and situation. With growing restrictions on their powers, individuals should select only the most rewarding interests and commitments, ones that can be performed without great effort. However, the choices made should not be determined only by subjective preference but also as a result of objective judgement. A particular individual may make the wrong choice and focus on activities that do not optimize their sense of identity, meaning or even pleasure. Losses or decline in several areas call for a concentration of the limited resources into areas of behaviour of great importance for the individual. The selection presupposes a reevaluation of goals, and can be reactive as well as proactive. That is, it may pertain to adjustment to limits or to actively overriding them by saving the resources for the most important tasks. A performer such as a singer or a musician may find it fruitful to select a more limited repertoire, performing only those pieces that were always performed well. Pianist Arthur Rubinstein has described how he actively selected amongst the piano repertoire that he performed in the latter part of his career and how he at that time abstained from performing very tricky pieces (Baltes & Baltes, 1990). Optimization is linked to behavioural plasticity and the ability of the individual to modify the environment both to create more favourable or desired outcomes for the self and to meet the continual challenges and changes being experienced. Examples of optimizing outcomes can be understood at an age-graded level (for example, maturation and the accumulation of experience), or at a history graded level (for example, improvements in health care and

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education). Optimization strategies can also be understood at physical, psychological and social levels. An example within the physical sector would be persons who are overweight and whose health therefore is in danger. Optimization in this case would be to keep to a strict diet or to exercise more or to avoid situations that are associated with over-eating. When some capacities are reduced and lost in old age the third principle of compensation can be used to aid adaptation. The principle of compensation involves the use of alternative means of reaching a goal, making increased use of the ‘tricks of the trade’ to keep performance at desired levels. The strategy of compensation reflects the recognition of constraints or challenges in the environment and the need for adults to respond to these constraints or losses by taking counter steps so that any potential impairment is lessened. Examples of compensatory mechanisms include the use of hearing aids, spectacles or walking sticks. Similarly, a pianist like Rubinstein, mentioned earlier, who still wants to perform at top level but has problems with the slowness brought on by age, has to find a solution to performing fast passages satisfactorily. A compensatory mechanism for the ageing pianist would be to slow down his performance prior to such a passage, to give the impression that it was being played faster than was actually the case. The model of selective optimization with compensation focuses on the personal meaning the individual ascribes to different arenas of action in late life. ‘Successful ageing’ is thus defined by personal goal attainment and the development of individualized strategies to accomplish favoured tasks and behaviour. Whether an individual ages successfully or not cannot be predicted in a generalized fashion, but is dependent on the striving of the individual and the domains of functioning he or she considers it important to keep intact in late life. Agreeing with Jung and Erikson, Baltes and Carstensen (1996) suggest that finding meaning is the major developmental task of old age. Meaning is a multifaceted concept, however, and may refer to reaching a cognitive congruence between values, goals and actions in the retrospective recollections and interpretations of life. An element of self-discovery may enhance personal meaning in late life. Future research in this area could include studies exploring adaptation and possible use of strategies of selection, optimization and compensation in adults who have experienced particular problems, for example adaptation following falls or a hip replacement. The development of questionnaire measures of selection, optimization and compensation has made possible their inclusion in a variety of studies from coping with cognitive decline to financial preparation for later life (Freund & Baltes, 2002).

Shifting between Assimilation and Accommodation In related but independent work, Jochen Brandtst¨adter and colleagues at the University of Trier in Germany (Brandtst¨adter & Greve, 1994; Brandtst¨adter & Rothermund, 1994; Brandtst¨adter, Rothermund & Schmitz, 1997; Rothermund & Brandtst¨adter, 2003a) have attempted to explain the ways in which developmental losses or self-discrepancies with age can be reduced by two interrelated processes: assimilation and accommodation. Their work is based on the assumption that later life has many biological, social, and psychological challenges and losses that pose ‘considerable strain on the individual’s construction of self and personal continuity’ (Brandtst¨adter & Greve, 1994, p. 52). Their theory also draws on the work of Markus and Wurf (1987) on representation of possible selves in the future and on protective strategies to enhance and maintain the self.

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Assimilative coping refers to strategies where individuals actively attempt to change the environment in ways congruent with their own goals and expectations. Strategies of assimilation can include behavioural changes. Brandtst¨adter views the processes of selection, optimization and compensation as well as socio-emotional selectivity theory (see next section) as subpatterns of assimilation, because these strategies enable the individual to engage in their preferred activities at a high level of functioning. In addition, they help the individual to ‘realize, maintain, and stabilize established self-definitions’ (Brandtst¨adter et al., 1997, p.108). However, when threats or losses with age become too demanding and too difficult, Brandtst¨adter argues that it may be necessary for the individual to move towards processes of accommodation. Accommodative coping refers to strategies of readjusting goals or aspirations downwards in the light of constraints and limitations within the environment or the self, for example as a result of physical ill health or reductions in mobility. Examples of accommodative strategies include reappraisal of experiences or the attribution of positive meaning to new goals and experiences, and the making of self-enhancing comparisons (Brandtst¨adter & Greve, 1994). Underpinning strategies both of assimilation and accommodation are immunizing processes: these refer to mechanisms that can influence the process of receiving information relevant to the self such as beliefs about the self, the availability of alternative interpretations or the rejection, or euphemistic interpretation, of self-threatening evidence. Further distinctions within immunization processes can be made between processes of encoding and interpreting evidence in ways which reduce or deny its relevance for the self (i.e. dataorientated immunization) and the reshaping or reorganization of items of evidence so that these are excluded from its range of application (i.e. concept-orientated immunization). The latter form of immunization tends to occur when data-orientated immunization strategies are not available. Brandtst¨adter and colleagues have developed two scales to test the processes of assimilation and accommodation: the Tenacious Goal Pursuit (TCP) and Flexible Goal Adjustment (FGA) scales. In cross-sectional pooled research with nearly 4,000 participants, Brandtst¨adter and Greve (1994) report modest linear relationships with age for both the TCP (r = 0.19, p < 0.001) and FGA (r = −0.22, p < 0.001). They found that older adults are increasingly likely to engage in accommodative processes, whereas younger adults are more likely to engage in strategies of assimilation. In addition, both scales were positively correlated with measures of optimisation, life-satisfaction, and absence of depression. Despite its strengths, the above model also has some limitations, not least in explaining the mechanisms involved in the above strategies. Brandtst¨adter et al. (1997), for instance, argue that one of the key factors in the development of strategies of assimilation and accommodation is flexibility in adjusting goals and expectations in the light of the context in which individuals find themselves. However, researchers need to be more precise about the mechanisms involved and why some people might be more successful in using these strategies than others. Specifically, it is not enough to propose that these strategies develop over time and generally occur outside conscious awareness. There are times when persons do not make optimal responses – when, for example, resistance rather than accommodation may be the most appropriate response for the type of constraints or limitations being experienced within the environment. More research is needed to understand better how these strategies come to be selected, their relationship to experienced change in the environment, and consequences for their functioning.

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Another closely related framework is the theory of control and its model of developmental optimization in primary and secondary control (Heckhausen, 1999; Schulz & Heckhausen, 1996, 1999). This theory is based on the assumption of the existence of a fundamental motivation for primary control, i.e. producing effects in the environment contingent on one’s own behaviour. The concept of secondary control refers to the person’s internal world and maintaining resources needed to be able to exert primary control. Individuals vary in their ability to regulate their control strategies and this impacts on their mental health and affective wellbeing (Heckhausen, Wrosch & Fleeson, 2001). Assimilation is similar to primary control in that it refers to active efforts on the part of the person to influence the situation. However the primary function of the former is consistency of goals, and hence sense of identity, over time, rather than control over the environment.

Socio-emotional Selectivity Theory Developed by Laura Carstensen, socio-emotional selectivity theory (Carstensen, 1991; Carstensen, Isaacowitz & Charles, 1999) claims that reductions in social contact across adulthood are volitional and result from changes in the salience of specific social goals, i.e. a preference for present emotion-based relationships rather than relationships based on knowledge acquisition. Information acquisition and the regulation of emotion are two principal classes of goals that are achieved through social contact. The essential premise of this theory is that the relative importance of these goals changes as a function of perceived time. When time is perceived as largely open-ended, future-orientated goals such as information acquisition are of paramount importance. When time is perceived as limited, adults adapt by prioritising present-orientated emotion-based relationships. Age is associated with preferences for emotionally satisfying contact over other forms such as information rich contact. To illustrate this theory, Carstensen, Isaacowitz and Charles (1999) compare relationships across the lifespan. The first-year student invests much time and energy in establishing new friendships. Maximizing experience allows more satisfying choices to be made. A newly-wed couple, if they are sensible, will devote a lot of time to their relationship and to solving problems as they arise within it. Although this may take considerable effort, this is balanced in the longer term by the lessening of future conflicts. An elderly couple by contrast ‘often decides to accept their relationship as it is, to appreciate what is good, and ignore what is troubling, rather than seek new solutions to problems’ (Carstensen, Isaacowitz & Charles, 1999, p. 167). The difference can be understood in terms of a greater present orientation rather than future orientation and maximizing emotional satisfaction. This theory suggests that age-related differences in anticipated future time influence developmental trends in knowledge-related social goals. In childhood and youth, much new information is gained through contact with more experienced and knowledgeable individuals. Teenagers are especially dependent on the views and ideas of their peer group. As the years go by social interaction will be needed less and will also be less effective in obtaining information. The individual is better educated in many ways and access to new information shifts to more specialized sources such as books, journals and data banks. Thus, the function of social contacts as gateways to information is reduced and relied on only in some special situations, such as asking a physician friend for advice on some medical symptoms or a

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builder friend for advice on some house repairs. Some information gained from friends thus may be potentially useful but on the whole Carstensen argues (1991) that this kind of ‘banking information for the future’ is of less use in old age. Lang and Carstensen (1994) have produced evidence to support their view that older people proactively manage the decline in the size of their social network as they age. When time is limited familiar social partners are preferred because they are best able to influence emotional states in the short term. Studies have shown that the social networks of older people are similar in structure to those of younger age groups but that the number of contacts within the networks are fewer for older people. They tend to prefer contact with their own children or friends or other familiar persons, whom they contact often. In these relationships quite intense emotions are invested and there are few data to support the idea of ‘emotional flattening’ in old age. However there does appear to be a reduced interest in interacting with acquaintances or a new partner. The pattern of avoiding initiating new contacts with nonfamilial persons is clearly visible in nursing homes and other institutions. There might be quite a risk involved in contact seeking in old age; conversations become more difficult for instance if the other person has difficulty hearing as a consequence of sensory loss. According to Carstensen, withdrawal represents an adaptive response in an overcrowded or unpredictable social environment Carstensen has collaborated with Margaret Baltes in arguing for the complementarity of the theory of socio-emotional selectivity with that of selective optimization with compensation (Baltes & Carstensen, 1996). The latter describes processes that are necessary for the realization of goals but does not refer to the criteria involved in the initial selection. Socio-emotional selectivity theory is involved in explaining this selection in the domains of emotions and social relations.

PSYCHOLOGICAL SURVIVAL IN LATE LIFE Despite the considerable research on the subject of ageing and adjustment, there have been relatively few studies conducted into the adaptations shown by the very old. As the numbers of those in the oldest groups increase it is important to pay more attention to the adjustments required by those living longer in states of growing frailty and dependency on others. In our recent textbook on ageing and development we have tried to readjust the balance by giving substantial weight to theories and research relating to the psychology of late life, particularly in regard to identity processes, personality-environment congruence, and dementia and attachment (Coleman & O’Hanlon, 2004). One reason for the neglect of advanced old age is that this stage of life is difficult to study using standard quantitative methods. Longitudinal studies of ageing have typically given an overoptimistic view of the later stages of life because of selective dropout. Those willing to respond to long schedules in their late eighties and nineties tend to be the fit old, those with high self-esteem and low depression ratings, who do not have difficulty in perceiving continuity with their earlier lifestyles and activities. More representative pictures of this age group are provided by observation and qualitative interview (Johnson & Barer, 1997; Kaufman, 1987). Sense of self has been the focus of interest in the few studies conducted on adaptation to late life. Maintenance of self-esteem was seen to be crucial to morale at all stages of life but particularly threatened by the losses of ageing (Schwartz, 1975). The important

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role of the environment in supporting the self has also been recognized. For example, social labelling, for instance as incompetent, was seen as contributing to decline in functioning via damage to the sense of self in the so-called ‘social breakdown’ theory of ageing (Kuypers & Bengtson, 1973). Investigations were also carried out in the 1970s and 1980s into older individuals’ sense of control over their life and how this too can be manipulated by well judged interventions. The focus of more recent research has been on individual differences in internal psychological resources, such as self-efficacy and environmental mastery, which underpin the coping processes (Windle & Woods, 2004). Studies are now beginning to look beyond the self as typically conceived by psychologists and are giving more attention to issues of personal meaning and spirituality (Coleman & O’Hanlon, 2004).

Resistance: Maintaining Self-esteem and Perceived Control The resiliency of late life was first demonstrated in the unlikely setting of institutions for older people in the US. It is important to bear in mind the historical and cultural context when interpreting these first studies into the psychology of late life carried out in US homes for the elderly. These studies focused in particular on maintenance of the self (Lieberman & Tobin, 1983) and the influence of subjective control (Langer, 1983, 1989). The institutionalized aged provided a readily available set of participants on whom various types of psychological studies could be carried out, ranging from observational recording to experimental designs, at a time when ethical considerations, particularly regarding consent procedures, were less stringent. In the US there was only one form of institution, the nursing home (as opposed to distinct provisions of residential care, nursing home and hospital long-stay ward places in Britain and other countries). There was also rising social concern in the US about quality of life in these institutions (Vladeck, 1980). Regimes were clinical, physical care poor and mortality rates high. Institutional care symbolized for most Americans one of the most dreaded outcomes of the ageing process. In a set of detailed studies, Lieberman and Tobin (1983) examined how American older people adapted to the stress of relocation to nursing homes. The studies demonstrated the remarkable stability of self-image that many older people maintained across these transitions but this was often achieved by changing the basis on which the self was constructed. Rather than relying on incidents from their current interpersonal interactions to confirm their image of self, people in these situations of loss and change also gave many examples from their past lives as well as reiterating general statements of conviction about themselves and their lives. They even seemed prepared to forego present reality altogether and use evidence based on wishes and distortions to maintain self-consistency. Such behaviour might appear disturbing at first acquaintance, as when an elderly resident referred to a picture taken 50 years ago as if it was a picture of herself today. But this illustration serves to emphasize the importance of the achievement of a coherent life story in late life. To an older person, identities are persistent. She or he is not the frail, impaired person you see but the sum – an integrated sum – of a long series of life experiences and events of which the last may be of relatively little importance. Other features noted about the very old by these researchers included a mythicizing of the past, a dramatization in which the important people and events became ‘bigger and better’. The greater vividness, the recall of feelings of love and devotion from parents and others, created a sense of specialness. In a quite different context, Kaufman (1987) has

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also illustrated how older persons transform present experience in ways that conform to important themes of their lives. It is the theme, for example of being the loved mother of a united family, which provides the persistent sense of meaning even when the reality fails to match. In other ways, though, very old people appeared to show a truer awareness, particularly of their own feelings. Destructive and anti-social feelings were admitted without the embarrassment and defensive explanations that might have been elicited earlier in life. According to Tobin (1991) this was because even previously unwelcome motives can be useful for self-definition in the face of the losses of old age. They affirm who one is and has been. Coherence and wholeness can be and is achieved, Tobin argues, even by those ‘whose reminiscence is, unfortunately, filled with vivid and, most likely, accurate memories of losses and deprivation’ (p. 12). The studies of relocation to institutions show that it is the older people who are prepared to be more assertive and combative in defining their own interests who survive longer. Passivity – including accepting how others define one – leads to earlier decline and death. Lieberman and Tobin (1983) pointed to the analogies between maintenance of sense of self and of physical survival. It can be as desperate a matter. Older people may find it difficult to acknowledge change. For example, changing appearance can be hard for a woman to bear if she has always prided herself on her appearance. The same applies to a man who has always emphasized his physical strength, which he now sees declining. Evidence of change, whether from mirrors, photographs or individual comparisons, are therefore resisted. Sometimes extreme strategies are used to maintain the old sense of self, which can appear strange and illogical to observers. Often these involve myths that exaggerate and dramatize certain personal qualities – myths of being in control of circumstances when one is not; myths of self-constancy that deny change; the blurring of the boundaries between past and present. Tobin (1999) has elaborated further on the behaviours people may use to maintain the self in advanced old age, including making the past vivid and distortion of both past and present. These observations provide important learning material for staff working in care settings. Sometimes the distortion of past or present reality becomes too extreme and diminishes the possibility of successful adaptation but generally a great deal of bending of reality is acceptable and, indeed, in certain difficult circumstances may seem almost essential to survival. For example, an elderly man who had always insisted that he would not accept relocation to an institution, but die first, in fact flourished in the home in which he was eventually placed. He had persuaded himself that he had been invited to live there in order to keep an eye on the other residents, to make sure that they behaved well and that their needs were properly catered for. Thus he had a role in the home, a reason for being there. In a separate set of studies on American nursing homes Langer and Rodin (Langer, 1983; Rodin, Timko & Harris, 1985) highlighted the importance of the experience of being in control of daily life. Control has become an important subject in general health psychology with clear evidence for the benefits on recovery and wellbeing for the patient having some control over the administration of treatment. However it is significant that the value of a subjective sense of control was first demonstrated in the field of care of older people. Those residents of nursing homes who felt – truly or falsely did not seem to matter so much – that they had a say over their daily activities fared better emotionally and cognitively than those who felt life was determined for them. The studies involved manipulating variables such as staff instructions and behaviour. Even taking minor responsibilities (e.g. for the care of

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a plant) was associated with more favourable outcomes. Similar findings have been found by other investigators (Baltes & Baltes, 1986). Subsequent research has provided a more nuanced view of the contribution of control to wellbeing (Moos, 1981; Reich & Zautra, 1990). There is an optimum level of subjective control for a particular individual in a particular situation. In most environments we operate below optimum. But exceeding that level can also be counterproductive, provoking anxiety and consequent under-performance. This type of ‘U-shaped’ performance function can be seen in other areas of psychogerontology. For example studies of social support show limits to the beneficial effects of assistance provided to older people. Social support beyond a certain level may actually exacerbate the noxious impact of stress (Krause, 1995). Older adults may be able to increase their coping skills if they are encouraged to confront stressful situations without the undue involvement of others. It is also apparent that in high constraint environments, which cannot be changed, older people with an external locus of control (a belief that events are outside their own control) appear better adjusted (Cicirelli, 1987; Felton & Kahana, 1974). Similarly, Smith and Baltes (1997) have shown that high belief in control by others can coexist with average levels of wellbeing in cognitively impaired elderly people. These findings illustrate the value of ‘person-environment congruence’ theory where wellbeing is a function of matching between environmental characteristics and a person’s needs (see Lawton, 1980; Parmelee & Lawton, 1990).

Acceptance: Meaning and Self-transcendence Since the late 1970s the initial emphasis in psychogerontological studies on the self and especially self-esteem has lessened. Evidence from longitudinal and other studies showed that self-esteem did not normally decline, at least in the early stages of ageing (Bengtson, Reedy & Gordon, 1985) and that the crucial difference came with the onset of frailty (Atchley, 1991). In current Western societies, self-esteem appears to peak on average as late as the seventh decade of life, a time of optimum control and self fulfilment (Robins et al., 2002). Decline then sets in as independence and control are relinquished, but large individual differences still remain in resulting levels of wellbeing. We are only now beginning to appreciate how even in circumstances of considerable loss and dependency many very old people maintain a positive view of life. Because of the striking and surprising character of many of the findings about adjustment to institutional care settings, they have come to take a prominent place in thinking about the psychology of late life in general, and preservation of the self in particular. However, as only a minority even of very old people live in institutions, it is very important to study more representative samples. Long-term survivors from most longitudinal studies of ageing, as already noted, are often unrepresentative, being the elite of older people, those who have had the stamina, good will and morale to meet the investigators’ demands. Hence there is now interest in studying and following over time samples of the very old, including centenarians (Martin et al., 2000; Poon et al., 1992). Evidence so far from such studies provides a highly contrasting picture to the earlier work on institutions. They confirm that, on average, some loss of morale and self-esteem does occur in the 80s and 90s but there is a wide variation in outcome and successful coping patterns emerge, which are quite distinct from the institutional studies. For example, the

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San Francisco studies of the over-85s indicate that acceptance of change is normal among the very old, as well as disengagement from potentially bothersome or stressful roles and relationships (Johnson & Barer, 1997). Contrary to findings on the younger old, the oldest old appear to gain benefit from giving up some control. Living in the present, one day at a time, is a favoured mode of life and new emotional attachments are avoided. The sense of aloneness resulting from multiple bereavements is counterbalanced by the special status of very old people as long-term survivors. Cultural differences are also evident in the way long life is evaluated, African Americans tending to see their long lives most positively, attributing to them religious and supernatural significance. However, in both black and white members of the sample, change is accepted more readily than might be imagined, not only in the outside world but also in the self. People convey the sense of having lived beyond their old lives and selves. The qualitative material collected in the course of this study is particularly telling. It illustrates how the very old ignore bothersome events: ‘I put a frame around my life and only see what I want to see.’ The bonds of reciprocity are loosened: ‘Life gets easier all the time because people don’t expect much of me.’ There is increased detachment both from the present (‘more things are beyond my control, so I just roll with the waves’) and the past (‘I have no regrets about the past because I’ve just forgotten them’) (Johnson & Barer, 1992, p. 359–61). The overall finding that disengagement is adaptive in those with frailty and failing powers runs counter to the earlier institutional literature, which emphasizes assertiveness and control. These findings can be integrated within Brandtst¨adter’s two-stage model of coping of assimilation and accommodation, described earlier. The most common response to challenge is assimilation and this appears true of older people as of younger people. Many older people fight long and hard to keep desired aspects of themselves alive through preventive, corrective and compensatory activities. Assimilation is the key element stressed in the Baltes and Baltes (1990) model of successful aging as ‘selective optimization with compensation’. Empirical study supports an association between these processes and wellbeing (Freund & Baltes, 1998). Selection, optimization and compensation are also clearly evident ways of coping in younger older adults adapting to chronic disability (Gignac, Cott and Badley, 2000). But while assimilative processes rightly predominate in younger old age, Brandtst¨adter and Greve (1994) argue that they are subject to a law of diminishing returns. There comes a time when it is best to switch to the accommodative mode, to accept change, to disengage from blocked commitments and to adjust aspirations to what is feasible. This transition from assimilative to accommodative modes of coping may be marked by feelings of helplessness and depression, but accommodation itself should not be confounded with lowered mood. According to Brandtst¨adter it is the failure to accommodate that more often marks depression. Recently reported studies have provided some evidence to support this view (Rothermund & Brandtst¨adter, 2003b). In Brandst¨adter’s model, the accommodative processes of later old age are neither devalued nor seen as difficult to realize. This is consistent with other theoretical positions on adaptation to ageing, especially the changing value given to previously important life goals. Even dependency itself can be reinterpreted positively (Baltes, Wahl & Reichert, 1991). Processes of (re)interpretation are common to much contemporary thinking about the self in later life (Dittmann-Kohli, 1990; Kaufman, 1987). While control over external events may be relinquished, control over meaning remains important. Although one can acknowledge its special place in late life, it is important to recognize that accommodative coping

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also plays an important role in maintaining a positive life perspective among younger people living with disability (Schmitz, Saile & Nilges, 1996). Research within the stress and coping paradigm, as well as control theory, supports this model. The old-old are more likely to find ways of avoiding problems and accepting difficulties that they cannot avoid (Aldwin et al., 1996). A similar argument to Brandst¨adter’s is presented by Heckhausen and Schulz (1993) – that the increasing constraints with ageing on the exercise of primary control are compensated for by a heightened investment in secondary control strategies such as disengagement and positive reappraisal. The emphasis on the concept of disengagement in this literature contrasts strongly with the ‘survival of the fittest’ emphasis of earlier research on institutional living. Nevertheless both Brandst¨adter and Atchley note that societal pressure often works against such psychological adaptation in late life. Striving to maintain the goals of younger life is admired in our society and, as a result, may be conducive to enhancing self-esteem in the short run. In the long run, of course, death intervenes. Some people may never incur severe disability in their lives but die suddenly or after a short illness. Both assimilation and accommodation are valuable in the course of ageing, and skill is required in judging when one or the other is appropriate (Coleman, Ivani-Chalian & Robinson, 1999). While the correct balance may seem difficult to define, we know that most older people are capable of finding an acceptable solution for themselves, otherwise their self-esteem would not remain so high. The ability to discern which goals are of lasting importance, and to accept which may have to be relinquished, links with the concept of wisdom (Ardelt, 1997). The growing emphasis on the importance of self-transcendence relates to this. Although up to now more studies have been carried out on this subject with people in the earlier stages of ageing, it can be argued that the culmination of processes of self-transcendence occurs in late life. Sherman and Webb (1994), for example, discuss the self as process in late-life reminiscence with a developing emphasis on being and belonging rather than having. In research comparing community-residing and institutionalized older adults, Fry has demonstrated that the pattern of associations between religious involvement, spirituality and wellbeing was stronger for the institutionalized elders (Fry, 2000). In a recent study of older people living in sheltered housing in the UK we have also produced evidence that the influence of spiritual belief on wellbeing is stronger at higher levels of frailty (Kirby, Coleman & Daley, 2004). Self-transcendence is more easily spoken about than achieved in an acquisitive and individualistic culture such as that of the US or UK. Still relevant to discussions on the self in late life is Alfred Adler’s pioneering approach to those with feelings of inferiority and inadequacy (Adler, 1927; see also Brink, 1979). Adler recognized that concerns about sense of worth, competence and efficacy are bound to resurface in later life as one loses physical power and social influence over others. His solution for both older and younger people was to look beyond self assertion towards ‘gemeinschaftsgef¨uehl’ (‘social interest’), working with others for a common good that transcends self interest. In studies of self-evaluation an important distinction can be made between judgements of competence and judgements of value. It is possible for someone to accept declining competence while maintaining that life has not lost any of its meaning or value. A key concept in this context is ‘commitment’. Even if people feel their own contribution is minimal or nonexistent, to feel committed to a cause whether religious, ideological or political, or simply to one’s family or community, gives reason for living, if only to continue to witness to that cause. Researchers are giving more consideration to the role of belief

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systems in adaptation to the inevitable losses and changes associated with ageing, to the development of what Sherman has referred to as ‘psychophilosophy’, a way of thinking about life that actually influences one’s daily experience (Pargament, Van Haitsma & Ensing, 1995; Sherman, 1981). Thus, in principle, another approach to good quality of life in residential care would be to put less stress on individuality while stressing the importance of the community, shared tasks, and ‘team spirit’. It is significant that some of the most successful examples of community day centres recorded in the literature are of this kind. Hazan’s classic ethnographic study of a Jewish day centre in North London analysed how it had evolved to meet the needs of its members by eschewing personal reminiscing and individual concerns outside the centre, while emphasizing group activities and care (Hazan, 1980). Although it is hard to imagine such an establishment functioning in this way nowadays, their centre clearly satisfied the psychological and social needs of most of its attenders, many of whom had been disappointed in their family, and welcomed the new ‘family’ they had entered. Jerrome’s studies on day centres in Brighton, England, have also emphasized the benefits of identification with others achieved through repetitive ceremonies and assertion of strong in-group values (Jerrome, 1988; 1992). We agree with Baltes (1997) that a major problem for ageing people in modern society is that cultural support has failed to keep up with increases in the numbers of the very old. We also agree that it is not beyond the powers of human ingenuity to provide the modifications to living circumstances that would allow more meaningful lives for the increasing numbers of people growing to be very old. The fundamental problem is one of pessimistic attitudes to the processes of ageing and their consequences (Coleman & O’Hanlon, 2004). The spread of a more constructive view of the potential of later life in all its forms could change older people’s situation within a relatively short period of human history. In the last two centuries humans have adapted to massive changes in their ways of living. The changing character of the lifespan is one further challenge for us.

REFERENCES Adler, A. (1927) The Practice and Theory of Individual Psychology. Harcourt Brace World, New York. Aldwin, C.M., Sutton, K.J., Chiara, G. & Spiro, A. (1996) Age differences in stress, coping and appraisal: findings from the Normative Aging Study. Journal of Gerontology: Psychological Sciences, 51B, P179–P188. Anderson, J.E. (1956) Psychological Aspects of Aging. American Psychological Association, Washington DC. Ardelt, M. (1997) Wisdom and life satisfaction in old age. Journal of Gerontology: Psychological Sciences, 52B, P15–P27. Atchley, R.C. (1991) The influence of aging or frailty on perceptions and expressions of the self: theoretical and methodological issues, in The Concept and Measurement of Quality of Life in the Frail Elderly (eds J.E. Birren, J.E. Lubben, J.C. Rowe & D.E. Deutchman). Academic Press, New York, pp. 207–25. Baltes, M.M. & Baltes, P.B. (1986) The Psychology of Control and Aging. Hillsdale, NJ: Lawrence Erlbaum. Baltes, M.M. & Carstensen, L.L. (1996) The process of successful ageing. Ageing and Society, 16, 397–422. Baltes, M.M., Wahl, H.-W. & Reichert, M. (1991) Institutions and successful aging for the elderly? Annual Review of Gerontology and Geriatrics, 11, 311–337.

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Baltes, P.B. (1987) Theoretical propositions of life-span developmental psychology: on the dynamics between growth and decline. Developmental Psychology, 23, 611–26. Baltes, P.B. (1997) On the incomplete architecture of human ontogeny: selection, optimization and compensation as foundation of developmental theory. American Psychologist, 52, 366–80. Baltes, P.B. & Baltes, M.M. (1990) Psychological perspectives on successful aging: the model of selective optimization with compensation, in Successful Aging: Perspectives from the Behavioural Sciences (eds P.B. Baltes & M.M. Baltes). Cambridge University Press, Cambridge, pp. 1–34. Bengtson, V.L., Reedy, M.N. & Gordon, C. (1985) Aging and self-conceptions: personality processes and social contexts, in Handbook of the Psychology of Aging, 2nd edn (eds J.E. Birren & K.W. Schaie). Van Nostrand-Reinhold, New York, pp. 544–93. Birren, J.E. & Schroots, J.J.F. (1996) History, concepts and theory in the psychology of aging, in Handbook of the Psychology of Aging, 4th edn (eds J.E. Birren & K.W. Schaie). Academic Press, San Diego, pp. 3–23. Brandtst¨adter, J. & Greve, W. (1994) The aging self: stabilizing and protective processes. Developmental Review, 14, 52–80. Brandtst¨adter, J. & Rothermund, K. (1994) Self-precepts of control in middle and later adulthood: Buffering loses by rescaling goals. Psychology and Aging, 9, 265–73. Brandtst¨adter, J., Rothermund, K. & Schmitz, U. (1997) Coping resources in later life. Revue Europeenne de Psychologie Appliquee, 47, 107–13. Brink, T.L. (1979) Geriatric Psychotherapy. Human Sciences Press, New York. Carstensen, L.L. (1991) Selectivity theory: social activity in life-span context. Annual Review of Gerontology and Geriatrics, 11, 195–217. Carstensen, L.L., Isaacowitz, D.M. & Charles, S.T. (1999) Taking time seriously: a theory of sociemotional selectivity. American Psychologist, 54, 165–81. Cicirelli, V.G. (1987) Locus of control and patient role adjustment of the elderly in acute-care hospitals. Psychology and Aging, 2, 138–43. Coleman, P.G., Ivani-Chalian, C. & Robinson, M. (1993) Self-esteem and its sources: stability and change in later life. Ageing and Society, 13, 171–192 Coleman, P.G., Ivani-Chalian, C. & Robinson, M. (1999) Self and identity in advanced old age: validation of theory through longitudinal case analysis. Journal of Personality, 69, 819–48. Coleman, P.G. & O’Hanlon, A. (2004) Ageing and Development: Theories and Research. Hodder Arnold, London. Dannefer, D. (1988) Differential gerontology and the stratified life course: conceptual and methodological issues, in Annual Review of Gerontology and Geriatrics. Volume 8. Varieties of Ageing (eds G.L. Maddox & M.P. Lawton). Springer, New York, pp. 3–36. Dannefer, D. & Perlmutter, M. (1990) Development as a multidimensional process: individual and social constituents. Human Development, 33, 108–37. Dittmann-Kohli, F. (1990) The construction of meaning in old age: possibilities and constraints. Ageing and Society, 10, 279–94. Erikson, E.H. (1950) Childhood and Society. Norton, New York. Felton, B. & Kahana, E. (1974) Adjustment and situationally bound locus of control among institutionalized aged. Journal of Gerontology, 29, 295–301. Freund, A.M. & Baltes, P.B. (1998) Selection, optimization and compensation as strategies of life management: correlations with subjective indicators of successful aging. Psychology and Aging, 13, 531–43. Freund, A.M. & Baltes, P.B. (2002) Life management strategies of selection, optimization and compensation: measurement by self-report and construct validity. Journal of Personality and Social Psychology, 82(4), 642–62. Fry, P.S. (2000) Religious involvement, spirituality and personal meaning for life: existential predictors of psychological wellbeing in community-residing and institutional care elders. Aging and Mental Health, 4, 375–87. Gignac, M.A.M., Cott, C. & Badley, E.M. (2000) Adaptation to chronic illness and disability and its relationship to perceptions of independence and dependence. Journal of Gerontology: Psychological Sciences, 55B, P362–72. Hazan, H. (1980) The Limbo People. A Study of the Constitution of the Time Universe among the Aged. Routledge, London.

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Heckhausen, J. (1999) Developmental Regulation in Adulthood: Age-Normative and Sociostructural Constraints as Adaptive Challenges. Cambridge University Press, New York. Heckhausen, J. (2005) Psychological approaches to human development, in Cambridge Handbook of Age and Ageing (eds M. Johnson, V.L. Bengston, P.G. Coleman & T. Kirkwood). Cambridge: Cambridge University Press, pp. 181–9. Heckhausen, J. & Schulz, R. (1995). A life-span theory of control. Psychological Bulletin, 102, 284–304. Heckhausen, J., Wrosch, C. & Fleeson, W. (2001) Developmental regulation before and after a developmental deadline: the sample case of ‘biological clock’ for child-bearing. Psychology and Aging, 16, 400–13. Jerrome, D. (1988) ‘That’s what it’s all about’: old people’s organizations as a context for aging. Journal of Aging Studies, 2, 71–81. Jerrome, D. (1992) Good Company: an Anthropological Study of Old People in Groups. Edinburgh University Press, Edinburgh. Johnson, C.L. & Barer, B.M. (1992) Patterns of engagement and disengagement among the oldest old. Journal of Aging Studies, 6, 351–64. Johnson, C.L. & Barer, B.M. (1997) Life beyond 85 Years: the Aura of Survivorship. Springer, New York. Jung, C.G. (1972) The transcendent function, in The Structure and Dynamics of the Psyche: Volume 8. The Collected Works of C.G. Jung (Second Edition). (eds H. Read, M. Fordham, G. Adler & W. McGuire). Routledge & Kegan Paul, London. Kastenbaum, R.J. (1984) When aging begins: a lifespan developmental approach. Research on Aging, 6, 105–17. Kaufman, S.R. (1987) The Ageless Self: Sources of Meaning in Late Life. University of Wisconsin Press, Madison. Kirby, S.E., Coleman, P.G. & Daley, D. (2004) Spirituality and well-being in frail and non-frail older adults. Journal of Gerontology: Psychological Sciences, 59B, P123–9. Krause, N. (1995) Assessing stress-buffering effects: a cautionary note. Psychology and Aging, 10, 518–26. Kunzman, U., Little, T.D. & Smith, J. (2000) Is age-related stability of subjective well-being a paradox? Cross-sectional and longitudinal evidence from the Berlin Aging Study. Psychology and Aging, 15, 511–26. Kuypers, J. & Bengtson, V. (1973) Competence and social breakdown: a social-psychological view of aging. Human Development, 16, 181–201. Lang, F.R. & Carstensen, L.L. (1994) Close emotional relationships in late life: further support for proactive aging in the social domain. Psychology and Aging, 9, 315–24. Langer, E. (1983) The Psychology of Control. Sage, Beverly Hills. Langer, E.J. (1989) Minding matters: the consequences of mindlessness-mindfulness. Advances in Experimental Social Psychology, 22, 137–73. Lawton, M.P. (1980) Environment and Aging. Brooks-Cole, Belmont CA. Lieberman, M.A. & Tobin, S.S. (1983). The Experience of Old Age. Stress, Coping and Survival. Basic Books, New York. Markus, H.R. and Wurf, E. (1987) The dynamic self-concept: a social psychological perspective. Annual Review of Psychology, 38, 299–337. Martin, P., Rott, C., Hagberg, B. & Morgan, K. (eds) (2000) Centenarians: Autonomy versus Dependence in the Oldest Old. Springer, New York. Moos, R.H. (1981) Environmental choice and control in community care settings for older people. Journal of Applied Social Psychology, 11, 23–43. Pargament, K.I., Van Haitsma, K. & Ensing, D.S. (1995) When age meets adversity: religion and coping in the later years, in Aging, Spirituality and Religion: A Handbook (eds M.A. Kimble, S.H. McFadden, J.W. Ellor & J.J. Seeber). Minneapolis, MN: Fortress Press, pp. 47–67. Parmelee, P.W. & Lawton, M.P. (1990) The design of special environments for the aged. In Birren, J.E. and Schaie, K.W. (Eds.) Handbook of the Psychology of Aging, 3rd edn (eds J.E. Birren & K.W. Schaie). Academic Press, San Diego, pp. 465–89. Poon, L.W., Sweaney, A.L., Clayton, G.M. et al. (1992) The Georgia Centenarian Study. International Journal of Aging and Human Development, 34, 1–17.

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Reich, J.W. & Zautra, A.J. (1990) Dispositional control beliefs and the consequences of a controlenhancing intervention. Journal of Gerontology, 45, P46–P51. Robins, W., Trzesniewski, K.H., Tracy, J.L. et al. (2002) Global self-esteem across the life-span. Psychology and Aging, 17, 423–34. Rodin, J., Timko, C. & Harris, S. (1985) The construct of control: biological and psychosocial correlates, in Annual Review of Gerontology and Geriatrics. Volume Five (eds C. Eisdorfer, M.P. Lawton & G.L. Maddox). Springer, New York, pp. 3–55. Rothermund, K. & Brandtst¨adter, J. (2003a) Coping with deficits and losses in later life: from compensatory action to accommodation. Psychology and Aging, 18, 896–905. Rothermund, K. & Brandtst¨adter, J. (2003b) Depression in later life: cross-sequential patterns and possible determinants. Psychology and Aging, 18, 80–90. Rowe, J.W. & Kahn, R.L. (1998) Successful Aging. Pantheon, New York. Schmitz, U., Saile, H. & Nilges, P. (1996) Coping with chronic pain: flexible goal adjustment as an interactive buffer against pain-related distress. Pain, 67, 41–51 Schultz, R. & Heckhausen, J. (1996). A life span model of successful aging. American Psychologist, 51, 702–14. Schulz, R. & Heckhausen, J. (1999) Aging, culture and control: setting a new research agenda. Journal of Gerontology: Psychological Sciences, 54B, P139–P145. Schwartz, A.N. (1975) An observation on self-esteem as the linchpin of quality of life for the aged. The Gerontologist, 15, 470–72. Sherman, E. (1981) Counseling the Aging: An Integrative Approach. Free Press, New York. Sherman, E. & Webb, T. (1994) The self as process in late-life reminiscence: spiritual attributes. Ageing and Society, 14, 255–67. Smith, J. & Baltes, P.B. (1997) Profiles of psychological functioning in the old and oldest old. Psychology and Aging, 12, 458–72. Sugarman, L. (2001) Life-Span Development: Frameworks, Accounts and Strategies, 2nd edn, Psychology Press, Hove. Thompson, P., Itzin, C. & Abdenstern, M. (1990) ‘I Don’t Feel Old’: The Experience of Later Life. Oxford University Press, Oxford. Tobin, S.S. (1991) Personhood in Advanced Old Age. Implications for Practice. Springer, New York. Tobin, S.S. (1999) Preservation of the Self in the Oldest Years: With Implications for Practice. Springer, New York. Townsend, P. (1981) The structured dependency of the elderly: the creation of social policy in the twentieth century. Ageing and Society, 1, 5–28. Vladeck, B.C. (1980) Unloving Care. The Nursing Home Tragedy. Basic Books, New York. Walker, A. (1999) Public policy and theories of aging: constructing and reconstructing old age, in Handbook of Theories of Aging (eds V.L. Bengtson & K.W. Schaie). New York: Springer, pp. 361–78. Windle, G. & Woods, R.T. (2004) Variations in subjective wellbeing: the mediating role of a psychological resource. Ageing and Society, 24, 583–602.

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Memory and cognition in ageing Boo Johansson ¨ ¨ Goteborg University, Goteborg, Sweden

INTRODUCTION Memory and other cognitive abilities are often the focus of a clinical psychological assessment of older adults. Older people may experience changes in these abilities and family members may observe a compromised cognitive capacity that affects coping with everyday life demands. Although we perhaps tend to accept that memory and thinking abilities become worse with age, we all hope that we will experience good enough memory and cognition to be able to cope with our daily lives and maintain our preferred interests and activities. Whereas different types of dementia produce substantial change, we may ask ourselves whether self-experienced and observed changes represent significant changes within the ‘range of normal ageing’ or whether experienced or observed decline is indeed indicative of neuropsychological changes in early stages of dementia or other health-related conditions that produce compromised memory and cognition. The question that typically emerges is: ‘What should I expect of memory and cognition in later life?’ The same question is, in fact, often asked by the clinical psychologist working with older people in a professional clinical assessment. Understanding is therefore needed of age-related changes in the complex higher order brain processes, which are involved in how we remember and use various types of acquired information in problem solving, decision making, communication and other activities that require reflection and coping with internal and external demands. An objective assessment of memory and cognitive functioning requires clinical expertise directed by evidence-based theoretical guidelines in the composition of a valid test battery, in the evaluation of testing outcomes and in the gathering of supplementary information by interview of older people themselves and potential informants. The clinical psychologist needs to consider strengths as well as weaknesses, in memory and cognitive abilities, current performance relative to previous functioning and the cognitive demands imposed in everyday life (see Green, 2000; Johansson & Wahlin, 1998). This chapter provides a brief overview of both continuity and age-related changes in memory and cognitive functioning, including integrated theoretical models that guide Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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clinical psychology with older people. For more detailed information on current cognitive ageing research including the neurobiological and psychosocial context of cognitive functioning, the reader is directed to recent articles in scientific journals, textbooks (e.g. Craik & Salthouse, 2000; Dixon, B¨ackman & Nilsson, 2004; Hofer & Alwin, in press; Park, 2000) and to chapters in the Handbook of the Psychology of Aging series edited by Birren and Schaie.

COGNITIVE CHANGE AND CONTINUITY – A LIFESPAN DEVELOPMENTAL MODEL Age-related differences and changes in memory and other cognitive abilities should be considered in the context of a lifespan developmental model. Baltes and Nesselroade (1979) identify three major sources of influences that characterize the dynamic interaction between the individual and the context: normative age-graded influences, normative history-graded influences, and non-normative life events. The relationship between these influences is in a continuous state of change because of their continuous interaction.

Normative Age-graded Influences Normative age-graded influences refer to biological ageing as well as to influences imposed from the external environment that are highly correlated with chronological age – for example, puberty, menopause or retirement. These influences means that we can expect a largely similar pattern of change among individuals with the same age exposed to the same environment – the same basic education, socioeconomic status, occupation, and standard of living. Cross-sectional studies based on age differences typically provide a pattern confirming the public view of ageing as reflecting general decline in most cognitive abilities (see for example data from Schaie, 2005, demonstrating age differences in various cognitive abilities from age 25 to 81). However, data indicate that certain abilities seem to be less associated with chronological age. The finding of this ‘classical ageing pattern’ (Botwinick, 1978) of ‘hold’ versus ‘not-hold’ tests provided support for the broad distinction between fluid and crystallized abilities (Horn, 1982), a distinction assumed to reflect two developmental trends. Fluid abilities (Gf) were ascribed to cognitive processes involved in identifying complex relations among stimulus patterns and the drawing of inferences on the basis of comprehension of more complex relationships. Tests of logical reasoning, figural, and spatial relations are typically used to measure fluid ability. Crystallized abilities (Cc) refer to the lifelong cumulative product of information acquired mainly through interactions with the environment. These experience-based abilities include tests of vocabulary, general world knowledge and comprehension. Interestingly, the distinction leads to expectations of preserved function, or even improvements with age, in crystallized abilities. In contrast to data from cross-sectional studies, longitudinal findings on memory and cognitive performance typically tend to demonstrate less negative age effects. In the same way as in a clinical assessment, the individual acts as his or her own control in these studies. The origin of intra-individual change is sought within the historical context of

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the individual and in the unique mix of exposures across the lifespan; the origin may be sociocultural or refer to primary biological ageing processes that decrease the overall integrity of the nervous system and reserve capacity of older adults. Although selective survival and other factors causing attrition, the loss of participants at follow-up assessments, may bias the results of longitudinal studies, the longitudinal design represents the best available approach for developmental studies. Such studies allow intra-individual changes to be observed and disentangled from differences between individuals in trajectories of change (Hofer & Sliwinski, 2006).

Normative History-graded Influences Normative history-graded influences refer to influences that are correlated with historical time and experienced in a similar way by most members of a birth cohort in a certain culture. History-graded influences become manifest in cohort and period effects. The historical context imprints individuals in a certain manner and forms cohorts and generations that share experiences and values that differ from previous and later cohorts and generations. For example, years of basic education and the historical introduction and use of technologies like the computer differ across cohorts and generations in the same way as experiences of epidemics and war are likely to affect members of a certain culture in a similar way. In an assessment context the clinical psychologist needs to consider whether available norms are cohort-adjusted to permit an accurate evaluation of performance across ages. In a comparison of population-based samples of 70-year-old individuals born at various times it was found that later cohorts generally demonstrate better performance than earlier birth cohorts (Steen, Berg & Steen, 1998). Table 3.1 demonstrates these cohort effects, which may well be present in clinical psychological assessment of older people. Although positive cohort effects might be the general expectation, for certain abilities we may expect the opposite due to less exposure and training in certain mental activities; for instance, later cohorts may perform worse at numerical calculations because today we largely rely on electronic calculators or other technical devices even for simple computations. For example, in the Seattle Study it was convincingly shown that this ability was worse in later birth cohorts (Schaie, 2005). Findings of cohort differences provide clear evidence that memory and cognitive abilities are influenced by the experiences we gain over the life course as well as by the way in which various cognitive abilities are used, reinforced, and valued. Besides education, which is highly associated with generation and cohort, overall health is typically better in later cohorts, manifested also in an increasing life expectancy at the population level. One important lesson to be learned from cohort differences, sometimes referred to as the ‘Flynn-effect’ (Flynn, 1987), is that reference values and norms for cognitive tests need to be continuously updated to be valid for the normative age-related change of a certain birth cohort.

Non-normative Influences Non-normative influences demonstrate weak associations with chronological age and refer to the events and exposures which affect certain, but not all, individuals. These might include

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HANDBOOK OF THE CLINICAL PSYCHOLOGY OF AGEING Table 3.1 A comparison between 70-year-old men and women born 1906–7 and 1922, respectively. Mean performance for each group. Adapted from Steen et al. (1998) Women Cognitive test

Men

1906/07

1922

1906/07

1922

Mental speed Perceptual speed (Psif test)

19.6

23.2

18.5

20.7

Verbal ability Synonyms (SRB 1)

18.1

20.9

19.1

21.1

Reasoning Figure logic (SRB 2)

13.8

15.2

14.1

16.5

Spatial ability Block design (SRB 3)

14.6

17.7

16.6

18.3

5.4 4.1

5.8 4.3

5.5 4.2

6.1 4.3

18.9

21.3

18.3

20.1

Primary/working memory Digit span forward Digit span backward Long-term memory – episodic Thurstone’s picture recognition

traumatic life events, physical disease and disability, and dementia. From a lifespan developmental perspective, normative age-graded influences are likely to be more pronounced early in life due to biological maturity and in later life due to primary ageing changes – ‘normal ageing’– that affect all of us to some extent, although with different magnitude at various ages. Non-normative life events are perhaps more significant in midlife i.e. during the period between maturity and ageing where biological changes are relatively less pronounced. The lifespan model largely suggests an increase of inter-individual differences across the lifespan. In the context of a clinical psychology assessment this means that multiple influences, besides primary ageing, always need to be considered in the evaluation of everyday life performance as well as of the outcomes of formal testing. A chronological time structure often assumes that development and ageing produce invariant trajectories. However, the passage of time is only one differential variable to consider, although it may be seen as the ‘elephant in the room’, dwarfing all other factors in its apparent explanatory power (Brayne, 2007). Other types of ageing effects are often more important and informative in the clinical psychology of late life.

TYPES OF AGEING AND COGNITIVE OUTCOMES The cascade model proposed by Birren and Cunningham (1985) (see Figure 3.1) represents a useful model, relevant for a clinical psychology assessment of memory and cognitive abilities in older people. The model is based on a separation of primary, secondary and tertiary ageing effects. Primary ageing refers to the irreversible maturation changes characterizing the normal ageing trajectory, produced by intrinsic sources. Secondary ageing

MEMORY AND COGNITION IN AGEING

Primary ageing

Secondary ageing

Tertiary ageing

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Mental speed Fluid abilities Episodic memory

Crystallized abilities Semantic memory

Pervasive across memory and cognitive abilities

Figure 3.1 Types of ageing and cognitive outcomes. The modified cascade model (adapted from Birren & Cunningham, 1985).

refers to changes due to illnesses or pathology, on top of inevitable changes accompanying primary ageing. Tertiary ageing refers to decremental influences, including subclinical disease processes, which elevate the risk of mortality and produce a decline in memory and cognitive abilities. This decline may become manifest some years before death and is therefore referred to as terminal change, and more specifically as terminal decline in the case of the linear decline observed at the population level and terminal drop for the curvilinear decline pattern observed in single individuals (see Berg, 1996; Bosworth & Siegler, 2002). The three types of ageing are unfortunately impossible to fully disentangle in a clinical assessment. Not only does the critical issue of ‘normality’ become more problematic with age but a full evaluation according to the model also includes longitudinal follow-ups until the death of the individual; the identification of terminal change requires a retrospective analysis based on information about performance level and change across occasions relative to time of death. In a clinical assessment, however, the psychologist typically needs to conclude whether the person’s functioning is to be seen as impaired or whether the person’s overall functioning may be considered as relatively normal – within the range of ‘normal ageing’. In this sense the model directs attention to major categories of influence on memory and cognition, including overall vitality, indexed by health status and the likelihood of subsequent survival.

Primary Ageing Primary ageing is principally produced by inevitable age-related changes – changes associated with chronological age or distance from birth. Primary ageing effects on cognition are basically observed in the decline of mental speed. This slowing may in turn affect other cognitive processes where speed of behaviour is an essential component, for example in problem solving and executive functioning (see Hartley, 2006). Primary ageing effects are also observed in working memory, episodic memory and in fluid abilities. In most tests,

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time limits are more disadvantageous for older people. The likelihood of primary ageing effects occurring in isolation, empirically defined as lack of manifest or subclinical illnesses, decreases substantially with age.

Secondary Ageing Secondary ageing or disease-related ageing becomes significantly more important with age. For example, in a population-based sample of individuals aged 80 and older, only five individuals (0.7%) among 702 were found with no evidence of any diagnosis from medical records, self-reports or use of medications. The mean number of diagnoses in this sample was 6.7 (range 0–18). Notably, less than 10% had two or fewer diagnoses (Nilsson et al., 2002). Numerous studies have shown that specific diseases and comorbidity may affect memory and cognitive abilities. For example, comorbid hypertension and diabetes produced more pronounced decline in the above sample compared with those who had hypertension or diabetes alone (Hassing et al., 2004). Recent studies on memory and cognitive ageing tend to include aspects of physical health as covariates in analysing performance. In the clinical setting, the clinical psychologist should always consider the potential effects of specific diseases and of overall health status in evaluating test performance, in the same way as more obvious impairments in sensory and motor functioning would be considered. The distinction between primary ageing effects and pathology, however, becomes increasingly difficult with age. Besides the substantial prevalence of comorbidities, multiple coexisting conditions, the symptoms of diseases may change and often tend to be become more diffuse in later life. In addition, any particular disease is often accompanied by specific treatments, which may have potential side effects on memory and cognitive functioning, as seen, for example, with psychotropic medications (see Berg & Dellasega, 1996; Gray, Lai & Larson, 1999; O’Keeffe & Moore, 1999). The detection of cognitive deficits in a clinical psychology assessment is likely to be indicative of early disease processes (secondary ageing), whether reflecting early stage dementia or other diseases affecting neuropsychological functioning. Dementia represents a diagnostic category of particular relevance and demonstrates the principal difficulty in distinguishing between primary and secondary ageing, especially in the early stages of the disease. The insidious onset of diseases like Alzheimer’s presents a special diagnostic challenge as well as a problem in the interpretation of research findings. There is current intense research interest in understanding the mild cognitive impairment (MCI) complex (Winblad, et al., 2004) and in distinguishing individuals who will subsequently develop dementia from those who will remain nondemented, although perhaps at a lowperformance level. This concern is shared by the clinical psychologist who identifies compromised memory and cognitive functioning in an older person, not fully meeting ICD or DSM-criteria for dementia (e.g. Artero & Ritchie, 2003). The diagnostic criteria for dementia emphasize the centrality of cognitive changes and therefore it is clinically diagnosed on the basis of certain patterns of memory and cognitive impairments, supplemented with an examination of health status that may rule out other origins for compromised function. The dementias have increasingly become a major public health concern in all countries with a greying population, but especially for ageing persons themselves. The high prevalence

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Figure 3.2 Test performance in the Block Design Test relative to subsequent survival (Author’s ¨ own data from the H70 Study in Goteborg).

and incidence rates (Ferri, et al. 2005), coupled with personal experiences of dementia among friends and relatives and an increasing public awareness that dementia represents a disease entity that should be distinguished from ‘normal ageing’ are well understood and lead increasing numbers of older people to seek a professional assessment.

Tertiary Ageing Tertiary ageing effects become more pronounced with age simply due to a greater likelihood of a shorter ‘distance-from-death’ period. Primary ageing and secondary ageing are often considered with reference to chronological age while tertiary ageing raises the more complex issue of the effects on memory and cognitive performance arising from the overall biological devitalization that typically occurs prior to death. The original cross-sectional finding by Kleemeier (1962) of a relationship between performance levels and subsequent survival is largely supported by more recent longitudinal data (B¨ackman & MacDonald, 2006; Bosworth & Siegler, 2002). Individuals who are closer to death typically perform worse on various tests of memory and cognition compared to those of the same age who survive for longer. Although this may seem obvious, as survival is closely related to overall health, subclinical neurobehavioral change may present long before clinical manifestations of disease (Hassing, 2002). Figure 3.2 shows a typical pattern of terminal change in which a population-based sample is separated into groups according to their subsequent survival. Individuals with a longer survival also show superior performance at previous time-points. In a recent longitudinal study of individuals aged 70-100, multilevel analysis was used to simultaneously model the effects of distance to death-related change, controlling for age-related change, and vice versa. The outcome showed a more pronounced time-to-death decline compared with the time-from-birth pattern in which time-to-death was controlled for as shown in Figure 3.3 (Thorvaldsson, Hofer & Johansson, 2006). Findings like this support the notion that proximity to death may be more important for observed decline than distance from birth or chronological age. This was recently confirmed in a study using change-point analysis to identify the inflection point or the typical start of accelerated change related to mortality. Longitudinal data from age 70 until mortality after

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Scores on Perceptual Speed

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Figure 3.3 Perceptual speed performance relative to age and time to death. The age based trajectory is less pronounced compared to the time-to-death based. (from Thorvaldsson, Hofer & Johansson, 2006)

100, with up to 12 measurement occasions, demonstrated that the onset of terminal decline was identified as long as six to eight years prior to death for verbal and spatial ability, and for more than 14 years for perceptual speed (Thorvaldsson, et al., submitted). Change in neuropsychological functioning in later life may be indicative of an increased mortality risk, which is shown in studies among individuals with compromised memory and cognition as well as among those who develop a dementia (see Johansson & Zarit, 1997).

AGEING – A MIXTURE OF GENETIC AND ENVIRONMENTAL INFLUENCES The challenge of separating primary, secondary and tertiary ageing effects on memory and cognition is reflected in the claim by K. Warner Schaie that ‘we have begun to recognize that the passage of time and getting older cannot have any causal property for any observed behaviour change’ (Schaie, 2005, p. 6). Thus, the origin of cognitive ageing needs to be identified in the underlying neurobiological mechanisms that become more evident in later life and that operate in all three types of ageing (primary, secondary, and tertiary), as well as in the physical and socio-cultural influences that operate throughout life on our unique genetic configuration (Brayne, 2007). Stress models provide a biobehavioural framework to incorporate the complex interaction between the outer and inner environment of the ageing individual (Sapolsky, 1999). A significant age-related increase is found in the activation of the HPA (hypothalamicpituitary-adrenal) axis, especially where cognition is compromised. Levels of stress hormones, such as cortisol, are found to be higher in older people, providing evidence for the notion that older individuals are more prone to stress (e.g. Magri et al., 2006). In fact, the definition of ageing once suggested by Nathan Shock (1983) was that of ‘a progressive loss of the organism’s ability to adapt to stress’. From a psychological perspective, this notion includes not only mechanisms associated with biological ageing but also our coping with

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various stressors, whether they reflect changes in the inner biological environment or in the outer world. Feelings of control and autonomy are important and may further account for individual differences in various ageing outcomes (Baltes & Baltes, 1986). These feelings are highly associated with our appraisal of the person-environment relationship (Lazarus & Folkman, 1984). Although self-appraisals seem to be rather stable from midlife to old age, net change may even favour a more positive appraisal in ageing in individuals experiencing more successful ageing (Holahan, 2003) (see Chapter 2, this volume, for a more detailed discussion). Recent studies of the relative importance of genetic and environmental influences in memory and cognitive outcomes demonstrate that a substantial heritability, 60% for general cognitive ability, may remain into very late life among nondemented individuals (McClearn et al., 1997). The heritability is typically lower for memory (Johansson et al., 1999). Although genetic influences are important for cognitive decline in later life and a substantial risk factor for compromised cognition (Gatz et al., 2005) and dementia (Gatz et al., 2006), recent studies also confirm the old notion of ‘use it or lose it’ as an important differential factor (Gatz, 2005). Engaged life styles, including physical exercise, social interactions, cognitively stimulating activities at work and in leisure may buffer cognitive decline and perhaps even have a neuro-protective role for dementia (Andel et al., 2005; Bennet et al., 2006; Crowe et al., 2003; Hultsch et al., 1999, Kramer, Erickson & Colcombe, 2006). The lesson to be learned is that although we may blame our genes, various influences from the physical and sociocultural context operate throughout the lifespan, sometimes adding to the risk of cognitive deterioration in later life, sometimes acting protectively. Disuse is sometimes identified as a source of age decline in abilities that require continuous use to be preserved. Support for the disuse hypothesis is provided by studies and interventions demonstrating considerably plasticity or modifiability in primary ageing. The gap between capacity and performance may become greater with age due to disuse. Reviews of memory and cognitive training studies suggest that older adults are able to ‘learn new tricks’ but that the acquisition of new techniques to improve performance produce specific, rather than generalized effects with low spontaneous use in everyday life. Notably, the magnitude of improvements are generally less in older people compared with younger individuals (Derwinger, 2005; Verhaeghen, Marcoen & Goosens, 1992). Training as well as observation studies are encouraging and provide support for the ‘use it or lose it’ idea implicated in a healthy lifestyle. More research, however, is needed to understand the limits and neurobehavioral restrictions of the ageing nervous system as well as about the mechanisms involved in late life brain plasticity (Kramer et al., 2004). It is evident that the physical changes in the ageing brain cannot fully account for all the changes observed with age in memory and cognition. Apart from cohort effects observed at the population level, lifelong learning experiences change individual brains by the new interconnections that are established. This positive brain plasticity makes the function of the brain more locally and globally adapted to perform various tasks. However, reduced schedules of cognitively demanding activities (‘brain disuse’), ‘noisy’ processing due to a deterioration in peripheral sensory systems and slower information processing, weakened neuromodulatory control by changed levels of neurotransmitters and negative learning or adaptation of behaviours that reinforce cognitive disuse, interact to produce diversely degraded memory and cognitive abilities in later life (Mahncke, Bronstone & Merzenich, 2006). Examination of individual life histories and individual differences in ageing is therefore as important as the identification of normative age changes, especially in the context of

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Figure 3.4 Longitudinal test scores from age 85 to age 100. (Author’s own data from the H70 Study).

a clinical psychological assessment (e.g. Rabbitt, 1993). The notion of substantial interindividual differences in intra-individual change is largely supported by observational and longitudinal data depicting individual trajectories. Figure 3.4 shows various trajectories across ages 85–100 years for individuals who survived to become centenarians. The cross-sectional cohort mean is considerably lower than for the longitudinal sample’s results. An important lesson for the clinical psychologist is that a sample cohort mean is uninformative for longitudinal trajectories. Interestingly, even in studies of genetically related individuals, observed trajectories may also differ considerably within twin pairs. In a study of cognitive change and continuity over six years in monozygotic and dizygotic twin pairs aged 80 and older, weak but often negative correlations were found among rates of change between individuals within twin pairs. The results suggest greater differential change within pairs compared with average change across twin pairs (Johansson et al., 2004). In everyday life we may encounter individuals of advanced age who actually show improved performance at an older age. Recovery from disease, and successful treatment of disease, is also possible in advanced age and should reinforce the need to consider individual patterns of change that potentially may become manifest as improvements (see Johansson, Zarit & Berg, 1992).

MEMORY – ACQUISITION AND STORAGE OF INFORMATION The capacity to acquire and store various types of information involves multiple memory systems and processes that operate in parallel to support individuals’ coping ability.

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A taxonomy of memory systems, based on neurobiological and behavioural data, was proposed by Squire (2004), which, together with more specific insights drawn from cognitive psychology, provides an overall guideline in the clinical setting. A major distinction can be made between explicit or declarative memory and implicit or nondeclarative memory. The former refers to memories of facts and events that can be consciously reported or declared – episodic and semantic memory. Nondeclarative memory includes a heterogeneous set of acquired learning, not directly available to our conscious experience – procedural memory, priming, simple classical conditioning and nonassociative learning. Studies have shown that the nondeclarative procedural memory system remains fairly robust throughout life, whereas declarative memory is more affected (Hoyer & Verhaeghen, 2006). For example, in a study of visuomotor procedural memory in healthy individuals aged 18 to 95 it was found that motor learning was slower with age but that memory for the motor performance was well retained across ages over a two-year period without further training or rehearsal (Smith et al., 2005). Further evidence for the robustness of procedural memory in primary ageing is provided by animal studies (e.g. Churchill et al., 2003). Longitudinal, as well as cross-sectional, data provide evidence for negative age effects in many memory tasks, the exception being short-term memory and in some cases semantic memory (e.g. Park et al., 2002). The magnitude of the age effects are, however, consistently smaller in longitudinal studies (R¨onnlund, 2005). Thus, we may expect memory to decline with age, but the magnitude of this decline differs considerably across tests measuring various memory systems and processes involved in the acquisition and storage of information.

Short-term Memory Short-term memory includes the primary memory component of a temporary passive storage system, as well as the working memory component that requires temporary holding of information at the same time as this information is being elaborated or processed in some way. Test of the former, such as the forwards Digit-Span test, show less age-related decline (Gregoire & Van der Linden, 1997), whereas tests of working memory produce more pronounced deficits in older individuals (Verhagen, Marcoen & Goossens, 1993).

Semantic and Episodic Memory In a clinical assessment, the focus is typically directed towards declarative memory and especially to the episodic long-term memory system of remembered events defined by time and place. Although the episodic memory system represents a storage system for discrete events that we retrieve in retrospect upon testing or in the course of normal everyday activities, it also includes a prospective component of memory for future acts, i.e. the remembering of intentions of what to do, where, and when. The prospective memory component has a significant role in executive functioning. Evidence show that our memory for facts – semantic memory – changes less in later life, compared with the more vulnerable episodic system. Tests of free recall and tasks providing limited support at testing are typically more difficult, whereas cued recall and recognition often show fewer age-related effects (e.g. B¨ackman, Small & Wahlin, 2001; Hoyer & Verhaeghen, 2006).

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Semantic memory deficits are likely to indicate secondary ageing, whereas a decline in episodic memory is also observed in primary ageing. In a psychological assessment it is important to differentiate between memory systems that are more-or-less impaired and to identify specific memory processes that are more-or-less preserved. To advance our understanding of memory functioning and the mechanisms involved in change we need explicitly to anchor and report our findings and observations from specific tests in explicit models. For example, comparisons of free recall and recognition performance in an episodic task may provide insights about the extent of encoding as well as the capacity to mobilize retrieval cues at testing. Although it is difficult to control fully for level of difficulty, comparisons of performance on verbal and nonverbal memory tasks may provide more detailed information about an individual’s capacity to remember and cope with everyday life. An issue often overlooked in memory testing is whether the to-be-remembered material is actually encoded. Word lists, varying in item length and with items that sometimes can be organized into aggregate categories, are often used to examine episodic memory. Following a single presentation trial the individual is asked for free recall, sometimes followed by selective cued recall for those items not retrieved. A problem with this test paradigm is that initial acquisition or learning is, in fact, uncontrolled. A subsequent test performance may falsely be interpreted as a retrieval memory problem although it might well be the case that the individual never learned or encoded the to-be-remembered material. This problem highlights the difficulty of distinguishing between difficulties in learning and the ability to store acquired information and the capacity for retrieval of encoded information, whether in a free recall, cued recall, or recognition condition. A test procedure explicitly examining the acquisition of the to-be-remembered material is often more informative, such as the Buschke selective reminding procedure (Buschke, 1973). Even the brief MMSE screening device includes learning to criterion before free recall of three items (Folstein et al., 1975). Chapter 22 (this volume) provides a detailed account of memory assessment.

OTHER COGNITIVE ABILITIES Cognition in a broad sense includes processes involved in the integration and reorganization of acquired information for the sake of matching behaviour to the environment in an appropriate manner – intelligent behaviour. The outcome of matching cognitive resources and task demands is demonstrated in terms of relative success, or failure, in performing a certain task, whether observed in everyday activities or measured by specific cognitive tests. Certain tasks are novel and therefore require the execution of new behaviour whereas others may be practised and therefore require less processing effort.

Fluid and Crystallized Abilities Fluid and crystallized abilities are largely associated with the study of psychometric intelligence. Various cognitive abilities are operationalized into specific tests assumed to measure differential cognitive processes as well as the more aggregate components of fluid and crystallized intelligence. Test batteries like the WAIS (Wechsler Adult Intelligence Scale)

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provide a set of specific tests for mental speed, verbal abilities, spatial orientation, and various aspects of reasoning. In a recent study of performance on the Block Design test (a test of visuo-spatial constructional ability) across the age range of 35 to 85, the estimated age-related change showed similar slopes for cross-sectional and longitudinal data. Longitudinal data, however, demonstrated a decline only after age 60–65 whereas the cross-sectional data indicated a deterioration from age 35. Notably, when the cross-sectional data was adjusted for education, the pattern became similar to that of the longitudinal data; this provides further evidence for cohort effects when comparing performance across ages groups (R¨onnlund & Nilsson, 2006). Results, based on seven-year intra-individual change for the six abilities measured in the Seattle Longitudinal Study by the Primary Mental Ability (PMA) test battery, show that the earliest reliable decline was observed from age 60 for perceptual speed and numerical ability (Schaie, 2005). Inductive reasoning and spatial orientation showed decline after age 67, whereas verbal ability remained fairly stable and declined only after age 80. Findings of normative patterns of age-related change, like the above, typically confirm that crystallized abilities remain relatively unaffected in later life compared to fluid abilities. Although normative age-related patterns are important for our general understanding of cognitive ageing, it is equally important for the psychologist to consider the unique trajectory of the individual and consider whether similar patterns can be revealed among individuals sharing certain experiences or affected by conditions such as Alzheimer’s. Changes in the overall mean score may otherwise obscure an understanding of why certain individuals present preserved memory and cognitive abilities in very late life. For example, in the Seattle Study examinations were also made of the proportion of persons in various age segments (53–60, 60–67, 67–74 and 74–81) who maintained their level of cognitive performance over a seven-year period. Interestingly, it was shown that more than 60% across all age groups showed no significant decline in tests of verbal meaning, spatial orientation, inductive reasoning, numerical ability or word fluency. The proportion with stable performance at age 74 was 70% and at 81 years of age 60% (Schaie, 1989). There are problems inherent in all higher-order approaches. Their greatest value is as a heuristic framework. Findings generally support the fluid-crystallized dichotomy but the trend in recent cognitive research is rather to examine various components and processes separately. This is in line with the task of the clinical psychologist seeking to evaluate a set of test scores from an older person.

Mental Speed Mental speed is a crucial ingredient in many memory and cognitive tasks because of time constraints. This is the case in everyday life as well as in clinical testing. It could be argued that time is less important than accuracy and that speeded tasks therefore are unfair to older people. On the other hand, speed of behaviour per se is an important marker of adaptation and intelligent behaviour. The former position assumes that the reduced rate of processing was extrinsic or peripheral to primary ageing of the nervous system. However, studies have demonstrated that slowing in fact represents an intrinsic phenomena accompanying primary ageing and that slowing reflects central rather than peripheral processes. In a meta-analysis of studies on the association between age and mental speed, the overall correlation was

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0.52, a figure that suggests the magnitude of normative slowing with age (Verhaeghen & Salthouse, 1997). Cognitive ageing researchers nowadays accept that speed of behaviour represents an informative component in tests of memory and intelligent behaviour.

Executive Functioning Executive functioning refers to the composite aspect of intelligent behaviour that enables us to engage in independent, purposive, self-serving behaviour. Executive functioning is consequently an important component in the cognitive processing of many tasks (see Lamar et al., 2002). Various tests of executive performance, including the components of planning, inhibition and flexibility typically demonstrate a decline with age (Salthouse, Atkinson & Berish, 2003; Wecker et al., 2005). In primary ageing, the executive capacity may, however, be maintained at the ‘good-enough’ level for many everyday activities. The exception may be activities that require high mental speed, for example, psychomotor behaviour and in verbal communications that parallel a verbal fluency test. The lack of alternative behaviours necessary to overcome and compensate for deficits in certain cognitive domains may be an indicator of executive dysfunction. This lack of flexibility may manifest as rigidity in both tests and in everyday tasks requiring a switching strategy.

Cognitive Processing Strategies Studies in cognitive neuroscience using functional brain imaging, have identified differences in brain activity suggesting that cognitive tasks may be processed differently in younger and older adults. The hemispheric encoding/retrieval asymmetry – the HERA pattern – which was found showed that the left frontal lobe was more active at encoding whereas the right frontal hemisphere was specifically involved in the retrieval of episodic memory, both verbal and nonverbal (Habib, Nyberg & Tulving, 2003; Tulving et al., 1994). Older adults were typically found to present a more diffuse activity pattern in which more regions were involved compared with younger individuals (Cabeza et al., 1997; Cabeza, 2002). This cross-sectional finding may indicate a compensatory strategy in older individuals (Cabeza et al., 2004) or perhaps a more integrated experience-based cognitive style in later life. Whether age differences in cognitive processing strategies reflect normative age changes remains to be examined. The way we perceive and cope with cognitive tasks may differ across ages due to familiarity and differential experiences associated with gender, education, and sociocultural influences that produce cohort differences. Cognitive processing strategies may differ considerably between individuals and across tasks. Evaluations of most memory and cognitive tests are based on performance scores, typically measured in terms of accuracy. Individuals are instructed to respond to a certain set of stimuli and performance is typically rated only in quantitative terms. However, a certain score may be obtained in various ways by the use of various strategies. For example, in the MIR (Memory-in-Reality) Test (Johansson, 1988/89) participants are instructed to first identify 10 common everyday objects by multimodal encoding and then to place these objects into various rooms in an apartment model, according to their own preferences. Participants are instructed to ‘think aloud’ while performing the task as well as at later free recall (Fiske & Gatz, 2007). The procedure enables observation of the way in which an

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individual organizes the to-be-remembered material at encoding and the potential use of a strategy to facilitate retrieval. Healthy older people often retrieve the objects by spontaneously using the ancient ‘method of loci’ of associating a specific object with a certain room (‘where did I put it?’). Interestingly, individuals with dementia and those with mild cognitive impairment are less able to use visuo-spatial imagery to facilitate their performance. Common daily life tasks, like handwriting, may also provide a window into cognitive processing. Older participants were asked to perform five functional writing tasks, including copying of a phone number, a grocery list with five items, details of a cheque into appropriate places, the alphabet sequence and a paragraph of about 100 characters (Werner, et al., 2006). In performing these tasks, kinematic measures of temporal, spatial and pressure characteristics were obtained. The results provide support for an association between handwriting performance and overall cognitive functioning. Normal older people and people with mild Alzheimer’s were clearly distinguished but the performance of individuals with MCI showed greater heterogeneity; presumably because some individuals may later convert to dementia, others will remain low functioning and others may in fact be showing terminal change.

EVALUATIONS OF CURRENT FUNCTIONING RELATIVE TO PREVIOUS FUNCTIONING Cognitive ageing research has recently become more focused on underlying mechanisms and factors that may contribute to age-related change as well as stability in memory and cognitive functioning. The research largely parallels the search requirements of the clinical psychologist who tries to understand current functioning in a single individual based on available information and assumptions about previous functioning. Using professional expertise and evidence-based evaluation methods the main question to be answered following an evaluation is: ‘How does current memory and cognitive functioning relate to what it was earlier in life and what may account for decline, whether compromised functioning is identified in tests, by self-report or informant observed behaviour change?’ (see Green, 2000; Johansson & Wahlin, 1998; Zarit & Zarit, 1999). This question corresponds with the longitudinal research design in which individuals are followed over time to identify evidence for continuity or change from a previous level, independently of the actual level relative to others. Uncertainty about how to evaluate an individual’s cognitive performance in clinical practice is likely to be resolved by reevaluations at appropriate intervals. The lack of historical memory and cognitive performance data for a person makes the inter-individual perspective an essential, but second best, approach for the clinical psychologist working with older people. At best, using cohort-, gender-, and education-adjusted norms provides more valid interindividual comparisons (McCarthy et al., 2003). An adequate understanding of the individual always requires information regarding previous cognitive functioning. Lack of this information makes it necessary for the psychologist to rely on assumptions about ‘previous performance’ combining information from life history, medical history, informant reports and self-evaluations. Information about professional accomplishments, leisure interests and activities that indicate intellectual ability or markers of the requirements associated with certain professions should also be considered.

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Informants, like spouses and family members can often contribute with significant information about change and functional consequences of impaired memory and cognition (Pearlin et al., 2001). Detailed reports from informants are therefore obligatory to evaluate the daily life implications of compromised cognition. Estimation of previous or pre-morbid functioning presents numerous pitfalls (see also Chapter 22, this volume). Previously high-functioning individuals often present a challenge in the clinical setting. For example, in the case of high-functioning individuals the clinician may ascribe self-reported problems, not convincingly shown in impaired test performance relative to norms, to non-cognitive factors like depression and compromised wellbeing rather than to actual cognitive decline (e.g. Tuokko et al., 2003). Another dimension to consider in a psychological assessment refers to ecological validity or the congruence between everyday life tasks and clinical memory and cognitive tests (Marsiske & Margrett, 2006). Although administered tests typically cover multiple domains and dimensions, it is important to remember that they only represent a sample of markers across domains of cognitive functioning. For example, in everyday life individuals may compensate for weaknesses in certain abilities by using strengths in other areas of functioning. This ecological aspect needs to be considered in an evaluation and may account for a discrepancy between self-reported problems and those identified in memory and cognitive tests where the individual is usually inhibited from using compensatory strategies to overcome weaknesses (Cockburn & Smith, 1991; Goodman & Zarit, 1995). The ‘lab-life dimension’ is especially relevant to consider in individuals showing impaired test performance, but relatively intact daily life functioning.

Self-evaluations Although a clinical psychological evaluation of memory and cognition is largely based on systematic testing, the clinical interview is still an important source of information. Self-reports may provide valuable insights about how people perceive their own cognitive functioning and the coping behaviours used to handle everyday life. An interview can be informative about how cognitive problems have evolved over time and should allow the person to address affective reactions and social consequences of compromised function. Self-reports and ‘self-diagnosis’ may in this respect uncover the impact of depression and negative affect on cognitive performance. In a study of performance predictions, people aged 50 to 79 were asked to predict how they would perform on four memory tasks. Besides, fluid ability scores the results also showed that self-confidence was an important predictor (Rabbitt & Abson, 1991). The authors conclude that accuracy of individuals’ assessment of their own abilities alters with age-related changes in fluid IQ but probably more radically with age-related changes in self-regard and in life style. Most studies of meta-memory, the knowledge of one’s own memory functioning, show weak associations between test performance and self-reports (see Burt, Zembar & Niederehe, 1995; Frerichs & Tuokko, 2006; Johansson, Allen-Burge & Zarit, 1997). Psychological wellbeing, depression, neuroticism, and feelings of self-control often contribute to self-evaluations and memory complaints (e.g., Derouesne et al., 1999; Kliegel, Zimprich & Eschen, 2005; Verhaeghen, Geraerts & Marcoen, 2000). A recent study, however, suggests that subjective memory may be a better indicator among individuals with possible incipient cognitive impairment, perhaps because persons who experience mild

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cognitive impairment may have heightened insight into their own memory functioning (Cook & Marsiske, 2006). Experiences of compromised memory and cognition often represent a major change in overall health.

Functional Health, Compromised Cognition and Clinical Priorities Older people are distributed between the extremes of those who experience early physical and cognitive impairments and the successful agers who maintain their performance throughout life. This notion provides the basic frame of reference for a clinical assessment, as well as for an accurate portrayal of differential ageing. An assessment of memory and cognition is often an essential component in a comprehensive health examination of older people. A general finding in studies of the association between subjective health and markers of ‘objective’ health is that of a weak relationship. Subjective health correlates with selfevaluations of general subjective wellbeing, including life satisfaction, anxiety, and depression, with sense of coherence but not substantially with objective health-related variables (Berg, 2006; Schneider et al., 2004). Studies of overall perceived health show that individuals generally report a slight worsening with age. Self-evaluations may also indicate slightly better subjective health in individuals who have survived into advanced ages (Johnsson & Barer, 1997). The major patterns of temporal health changes typically found in later life include those reporting constant good health, those with an early onset of perceived health decline, individuals with late onset of perceived health decline and those experiencing a course of recovery from poor self-assessed health (Liang et al., 2005). Self-evaluations of health can be contrasted with the research literature on memory and other cognitive functions that convey the general conclusion that memory and other cognitive performances decline with age due to primary, secondary and tertiary ageing. At the same time we often find that many older people maintain independence and successful functioning in everyday life with activities that require preserved memory and cognitive abilities. These observations seem contradictory and address the question of the practical or ecological significance of research based findings. Reduced speed of behaviour, less efficient episodic memory and deficits in fluid abilities may compromise various everyday life activities and remind the individual about compromised functioning. These primary ageing effects, largely associated with an overall reduced reserve capacity in the old nervous system, tend to lead the ageing individual to gradually adapt to a more restricted life and produce a negative spiral that leads to more and more decline (Mahncke, Bronstone & Merzenich, 2006). By the use of more-or-less conscious compensatory strategies and by deliberate selection of life arenas with lower exposure of cognitive demanding tasks, individuals may experience memory and thinking that is ‘good enough’ for daily life. The selective optimization with compensation model is relevant here (Baltes, 1991; 1993; see also Jopp & Smith, 2006; Riedeger, Li & Lindenberger, 2006 and Chapter 2 of this volume). A clinical psychological assessment of memory and cognition is unlikely in individuals experiencing only primary ageing. An unbiased evaluation approach of older individuals could therefore largely be based on the general assumption and expectation of relatively preserved memory and cognitive abilities relative to ordinary everyday demands (see Figure 3.5). Individuals who present more pronounced decline in tests and who are brought

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Individual resources and environmental (internal and external) demands Cognitive performance

Largely as before

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Figure 3.5 Differential trajectories of memory and cognitive change in later life in relation to everyday life task demands.

to the clinic by their family members or their own worries and experiences about compromised cognition should be offered an evaluation focusing on strengths as well as weaknesses across domains of memory and cognitive functioning taking into account potential effects of secondary and tertiary ageing processes. Compromised ‘memory and thinking’ experienced by older people themselves or recognized by others are always legitimate reasons for professional consultation and screening given the expectation that these abilities should be relatively preserved in primary ageing. Tentative findings from screening and interview should provide explicit arguments whether an in-depth psychological examination is indicated or not. A comprehensive clinical psychological examination should (a) identify level of functioning across multiple cognitive domains, (b) determine the magnitude of change relative to previous performance levels, (c) relate findings to underlying cognitive systems and processes, (d) analyse weaknesses as well as strengths in relation to ecological functioning, (e) suggest diagnosis in the context of overall physical and mental health, (f) communicate findings with the person, spouse or family, and (g) suggest psychological treatment and psychosocial interventions tailored to the individual person. The professional assessment can ultimately advance our understanding of cognitive change and the mechanisms involved in compromised memory and cognitive functioning also in later life.

REFERENCES Andel, R. , Crowe, M., Pedersen M. et al. (2005) Complexity of work and risk of Alzheimer’s disease: a population-based study of Swedish twins. Journal of Gerontology: Psychological Sciences, 60(5): P251–8.

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Artero, S. & Ritchie, K. (2003) The detection of mild cognitive impairment in the general practice setting. Aging and Mental Health, 7, 251–58. B¨ackman, L. & MacDonald, S.W.S. (2006) Death and cognition. synthesis and outlook. European Psychologist, 11, 224–35. ˚ (2001) Aging and memory: cognitive and biological perspecB¨ackman, L., Small, B.J. & Wahlin, A. tives, in Handbook of the Psychology of Aging, 5th edn (eds J.E. Birren & K.W. Schaie). Academic Press, San Diego CA, pp. 349–77. Baltes, M.M. & Baltes, P.B. (eds) (1986): The Psychology of Control and Ageing. Lawrence Erlbaum, Hillsdale NJ. Baltes, P.B. (1991) The many faces of human ageing: toward a psychological culture of of old age. Psychological Medicine, 21, 837–54. Baltes, P.B. (1993) The ageing mind: potential and limits. The Gerontologist, 33, 580–94. Baltes, P.B. & Nesselroade, J. (1979) History and rationale of longitudinal research, in Longitudinal Research in the Study of Behaviour and Development (eds J.R. Nesselroade & P.B. Baltes). Academic Press, New York, pp. 1–39. Bennet, D.A., Schneide, J.A., Tang, Y. et al. (2006) The effect of social networks on the relation between Alzheimer’s disease pathology and level of cognitive function in old people: a longitudinal cohort study. Lancet Neurology, 5, 406–12. Berg, A.I. Hassing, L., McClearn, G.E., & Johansson, B. (2006) What matters for life satisfaction in the oldest-old? Aging and Mental Health, 10, 257–64. Berg, S. (1996) Aging, behavior, and terminal decline, in Handbook of the Psychology of Aging (eds J.E. Birren & K.W. Schaie). Academic Press, New York. Berg, S. & Dellasega, C. (1996) The use of psychoactive medications and cognitive function in older adults. Journal of Aging and Health, 8, 136–49. Birren, J.E. & Cunningham, W.R. (1985) Research on the psychology of ageing: principles, concepts and theory, in Handbook of the Psychology of Aging (eds J.E. Birren & K.W. Schaie). Van Nostrand Reinhold Company, New York. Bosworth, H.B. & Siegler, I.C. (2002) Terminal change in cognitive function: an updated review of longitudinal studies. Experimental Aging Research, 28, 299–315. Botwinick, J. (1978) Aging and Behavior. Springer: New York. Brayne, C. (2007) The elephant in the room – healthy brains in later life, epidemiology, and public health. Nature Reviews – Neuroscience, 8, 233–39. Burt, D.B., Zembar, M.J. & Niederehe, G. (1995) Depression and memory impairment:a meta-analysis of the association, its pattern, and specificity. Psychological Bulletin, 117, 285–305. Buschke, H. (1973) Selective reminding for analysis of memory and learning. Journal of Verbal Learning and Verbal Behavior, 12, 543–50. Cabeza, R. (2002) Hemispheric asymmetry reduction in old adults. The HAROLD model. Psychology and Aging, 17, 85–100. Cabeza, R., Anderson, N.D., Locantore, J.K., McInstosh, A (2004) Aging gracefully: compensatory brain activity in high performing older adults. Neuroimage, 17, 1394–402. Cabeza, R., Grady, C.L., Nyberg, L. et al. (1997) Age-related differences in neural activity during memory encoding and retrieval: a positron emission tomography study. Journal of Neuroscience, 17(1): 391–400. Churchill, J.D., Stanis, J.J., Press, C. et al. ( 2003) Is procedural memory relatively spared from age effects? Neurobiology of Aging, 24, 883–92. Cockburn, J. & Smith, P.T. (1991) The relative influence of intelligence and age on everyday memory. Journal of Gerontology: Psychological Sciences, 46, 31–6. Cook, S. & Marsiske, M. (2006) Subjective memory beliefs and cognitive performance in normal and mildy impaired older adults. Aging and Mental Health, 10, 413–23. Craik, F.I.M & Salthouse, T.A. (eds) (2000) The Handbook of Aging and Cognition, 2nd edn. Lawrence Erlbaum, Mahwah NJ. Crowe, M., Andel, R., Pedersen, N.L. et al. (2003) Does participation in leisure activities lead to reduced risk of of Alzheimer’s disease? A prospective study of Swedish twins. Journal of Gerontology: Psychological Sciences, 58(5), 249–55. Derousene, C., Lacomblez, Thibault, S. & LePoncin, M. (1999) Memory complaints in young and elderly subjects. International Journal of Geriatric Psychiatry, 14, 291–301.

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Derwinger, A. (2005) Develop your Memory Strategies. Self-generated versus Mnemonic Training in Old Age: Maintance, Forgetting, Transfer, and Age Differences. Doctoral dissertation. Karolinska Institute, Stockholm. Dixon, R., B¨ackman, L. & Nilsson, L.-G. (eds) (2004) New Frontiers in Cognitive Ageing. Oxford University Press, Oxford. Ferri, C.P., Prince, M., Brayne, C. et al. (2005) Global prevalence of dementia: a Delphi consensus study. Lancet, 7; 366(9503): 2112–7. Fiske, A. & Gatz, M. (2007) The apartment test: validity of a memory measure. Aging, Neuropsychology & Cognition, 14, 441–461. Flynn, J.R. (1987) Massive gains in 14 nations: what IQ tests really measure. Psychological Bulletin, 101, 171–91. Folstein, M.F., Folstein, S.E. & McHugh, P.R. (1975) ‘Mini-mental state’: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189– 98. Frerichs, R.J. & Tuokko, H.A. (2006) Reliable change scores and their relation to perceived change in memory: implications for the diagnosis of mild cognitive impairment. Archives of Clinical Neuropsychology, 21, 109–15. Gatz, M. (2005) Educating the brain to avoid dementia: can mental exercise prevent Alzheimer’s disease? PLoS Medicine, 2(1), e7 doi: 10.1371/journal.pmed.0020007. Gatz, M., Fiske, A., Reynolds, C.A. et al. (2005) Performance on neurocognitive tests by co-twins to dementia cases compared to normal control twins. Journal of Geriatric Psychiatry Neurology, 18, 202–7. Gatz, M., Reynolds, C.A., Fratiglioni, L. et al. (2006) Role of genes and environments for explaining Alzheimer disease. Archives of General Psychiatry, 63, 168–74. Goodman, C.R. & Zarit, S.H. (1995) Ecological measures of cognitive functioning: a validation study. International Psychogeriatrics, 7, 39–50. Gray, S.L., Lai, K.V. & Larson, E.B. (1999) Drug-induced cognition disorders in the elderly: Incidence, prevention, and management. Drug Saftey, 21, 101–22. Green, J. (2000) Neuropsychological Evaluation of the Older Adult. A Clinician’s Guidebook. Academic Press, San Diego. Gregoire, J. & Van der Linden, M. (1997) Effects of age on forward and backward digit spans. Aging, Neuropsychology, and Cognition, 4, 140–9. Habib, R., Nyberg, L. & Tulving, E. (2003) Hemispheric assymmetries of memory: the HERA model revisited. Trends in Cognitive Science, 7, 241–5. Hartley, A. (2006) Changing role of the speed of processing construct in the cognitive psychology of human aging, in Handbook of the Psychology of Aging (eds J.E. Birren & K.W. Schaie). Elsevier Academic Press. San Diego. Hassing, L.B., Hofer, S.M., Nilsson, S.E. et al. (2004) Comorbid hypertension and type 2 diabetes mellitus exacerbates cognitive decline: evidence from a longitudinal study. Age and Ageing, 33, 355–61. Hassing, L.B., Johansson, B., Berg, S. et al. (2002) Terminal decline and markers of cerebro- and cardiovascular disease: findings from a longitudinal study of the oldest old. Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 57B(3), 268–76. Hofer, S.M. & Alwin, D.F. (in press) The Handbook on Cognitive Ageing: Interdisciplinary Perspectives. Sage Publications, Thousand Oaks. Hofer, S.M. & Sliwinski, M.J. (2006) Design and analysysis of longitudinal studies of aging. In Handbook of the Psychology of Aging (eds J.E. Birren & K.W. Schaie). Elsevier Academic Press. San Diego. Holahan, C.K. (2003) Stability and change in positive self-appraisal from midlife to later aging. International Journal of Aging and Human Devlelopment, 56, 247–67. Horn, J.L. (1982) The theory of fluid and crystallized intelligence in relation to concepts of cognitive psychology and ageing in adulthood, in Aging and Cognitive Processes, (eds F.I.M. Craik & S. Trehub). Plenum Press, New York. Hoyer, W.J. & Verhaeghen, P. (2006) Memory and ageing, in Handbook of the Psychology of Aging (eds J.E. Birren & K.W. Schaie). Elsevier Academic Press, San Diego.

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Hultsch, D.F., Hertzog, C., Small, B.J. Dixon, R.A. (1999) Use it or lose it: engaged lifestyle as a buffer of cognitive decline in ageing? Psychology and Aging, 14(2), 245–63. Johansson, B. (1988/89) The MIR test (Memory-in-Reality). Psykologif¨orlaget AB, Stockholm. Johansson, B., Allen-Burge, R. & Zarit, S.H. (1997) Self-reports on memory functioning in a longitudinal study of the oldest old: relation to current, prospective, and retrospective performance. Journal of Gerontology: Psychological Science, 52, P139–46. Johansson, B., Hofer, S.M., Allaire, J.C. (2004) Change in cognitive cababilities in the old-old: the effects of proximity to death in genetically-related individuals over a six-year period. Psychology and Aging, 19, 145–56. ˚ (1998) Cognition and geropsychological assessment, in Comprehensive Johansson, B. & Wahlin, A. Clinical Psychology Volume 7: Clinical Geropsychology (ed. B. Edelstein). Elsevier, New York. Johansson, B., Whitfield, K., Pedersen, N.L. et al. (1999) Origins of individual differences in episodic memory in the oldest-old: a population- based study of identical and same-sex fraternal twins aged 80 and older. Journal of Gerontology: Psychological Sciences, 54(3), P173–9. Johansson, B. & Zarit, S.H. (1997) Early cognitive markers of the incidence of dementia and mortality: a longitudinal population-based study of the oldest old. International Journal of Geriatric Psychiatry, 12, 53–9. Johansson, B., Zarit, SH. & Berg, S. (1992) Changes in cognitive functioning of the oldest old. Journal of Gerontolology: Psychological Sciences, 47, P75–80. Johnson, C.L. & Barer, B.M. (1997) Life Beyond 85 years. The Aura of Survivorship. Springer, New York. Kleemeier, R.W. (1962) Intellectual changes in the senium. Proceedings of the Social and Statistics Section of the American Statistical Association, 1, 290–295. Jopp, D., & Smith, J. (2006) Resources and life-management strategies as determinants of successful ageing: on the protective effect of selection, optimization, and compensation. Psychology and Aging, 21, 253–65. Kliegel, M., Zimprich, D. & Eschen, A. (2005) What do subjective complaints in persons with ageing associated cognitive decline reflect? International Psychogeriatrics, 17, 499–512. Kramer, A., Bherer, L., Colcombe, S.J. et al. (2004) Environmental influences on cognitive and brain plasticity during ageing. Journal of Gerontology: Medical Sciences, 59, M940–57. Kramer, A., Erickson, K.I. & Colcombe, S.J. (2006) Exercise, cognition and the aging brain. Journal of Applied Physiology, 101, 1237–42. Lamar, M., Zonderman, A.B., & Resnick, S. (2002) Contribution of specific cognitive processes to executive functioning in an ageing population. Neuropsychology, 16, 1576–162. Lazarus, R.S. & Folkman, S. (1984) Stress, Appraisal and Coping. Oxford University Press, New York. Liang, J., Shaw, B.A., Krause, N. et al. (2005) How does self-assessed health change with age? A study of older adults in Japan. Journal of Gerontology: Social Sciences, 60, S224–32. Magri, F., Cravello, L., Barili, L. et al. (2006) Stress and dementia: the role of the hypothalamicpituitary-adrenal axis. Aging Clinical Experimental Research, 18, 167–70. Mahncke, H.W., Bronstone, A. & Merzenich, M.M. (2006) Brain plasticity and functional losses in the aged: scientific bases for a novel intervention. Progress in Brain Research, 157, 81–109. Marsiske, M. & Margrett, M. (2006) Everyday problem solving and decision making, in Handbook of the Psychology of Aging (eds J.E. Birren & K.W. Schaie). Elsevier Academic Press. San Diego. McCarthy, F.M., Sellers, A.H., Burns, W.J. et al. (2003) Predicion of IQ in the Mayo older adult normative sample using multiple methods. Journal of Clinical Psychology, 59, 457– 63. McClearn, G.E., Johansson, B., Berg, S. et al. (1997) Substantial genetic influence on cognitive abilities in twins 80 or more years old. Science, 276(5318), 1560–3. Nilsson, S.N., Johansson, B., Berg, S. et al. (2002) A comparison of diagnosis capture from medical records, self reports, and drug registrations: A study in individuals 80 years and older. Aging Clinical and Experimental Research, 14, 178–84. O’Keeffe, S.T. & Moore, A.R. (1999) Drug-induced cognitive impairment in the elderly. Drugs and Aging, 15, 15–28. Park, D.C. (eds) (2000) Cognitive Ageing. A Primer. Taylor & Francis, Philadelphia PA.

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Park, D.C., Lautenschlager, G., Hedden, T. et al. (2002) Models of memory across the life span. Psychology and Aging, 17, 299–320. Pearlin, L.I., Harrington, C., Lawton, M.P. et al. (2001) An overview of the social and behavioural consequences of Alzheimer’s disease. Aging and Mental Health, Supplement, 1, S3–6. Rabbitt, P. (1993) Does it all go together when it goes? Quarterly Journal of Experimental Psychology, 46 A, 385–434. Rabbitt, P. & Abson, V. (1991) Do older people know how good they are? British Journal of Psychology, 82, 137–51. Riediger, M., Li, S-C., Lindenberger, U. (2006) Selection, optimization, and compensation as developmental mechanisms of adaptive resource allocation: review and preview, in Handbook of the Psychology of Aging (eds .J.E. Birren & K.W. Schaie). Academic Press, London. R¨onnlund, M., Nyberg, L. , B¨ackman, L. & Nilsson, L-G. (2005) Stability, growth, and decline in adult life span development of declarative memory: cross-sectional and longitudinal data from a population-based study. Psychology and Aging, 20, 3–18. R¨onnlund, M. & Nilsson, L-G. (2006) Adult life-span patterns in WAIS-R Block Design performance: cross-sectional versus longitudinal age gradients and relations to demographic factors. Intelligence, 31, 63–78. Salthouse, T.A., Atkinson, T.M., & Berish, D.E. (2003) Executive functioning as a potential mediator of age-related decline in normal adults. Journal of Experimental Psychology: General, 132, 566– 94. Sapolsky, R.M. (1999) Glucocoricoids, stress, and their adverse neurological effects: relevance to ageing. Experimental Gerontology, 34, 721–32. Schaie, K.W. (1989) The optimization of cognitive functioning in old age. Predictions based on cohort-sequential and longitudinal data, in P.B. Baltes & M.M. Baltes (eds) Successful Ageing: Perspectives from the Behavioural Sciences. Cambridge University Press, Cambridge. Schaie, K.W. (2005) What can we learn from longitudinal studies of adult development? Reearch in Human Development, 2, 133–158. Schneider, G., Driesch, G., Kruse, A. et al. (2004) What influences self-perceptions of health in the elderly? The role of objective health condition, subjective well-being, and sense of coherence. Archives of Gerontology and Geriatrics, 39, 227–37. Shock, N.W. (1983) Aging of physiological systems. Journal of Chronic Diseases, 36, 137–42. Smith, C.D., Walton, A., Loveland, A.D. et al. (2005) Memories that last in old age: motor skill learning and memory preservation. Neurobiology of Aging, 26, 883–90. Squire, L.R. (2004) Memory systems of the brain: a brief history and current perspectives. Neurobiology of Learning and Memory, 82, 171–7. Steen, G., Berg, S. & Steen, B. (1998) Cognitive function in 70-year old men and women: a 16-year cohort difference population study. Aging, 10, 120–6. Thorvaldsson, V., Hofer, S.M. & Johansson, B. (2006) Aging and late life terminal decline: a comparison of alternative modeling approaches. European Psychologist, 11, 196–203. Thorvaldsson, V., Hofer, S.M., Berg, S. et al. (submitted) Onset of terminal decline in cognitive abilities in nondemented individuals. Tulving, E., Kapur, S., Craik, F.I.M. et al. (1994) Hemispheric encoding/retrieval asymmetry in episodic memory: Positron emission tomography findings. Proceedings of the National Academy of Science, 91, 2016–20. Tuokko, H., Garett, D.D., McDowell, I. et al. (2003) Cognitive decline in high-functioning older adults. Reserve or ascertainment bias? Aging and Mental Health, 7, 259–270. Verhaeghen, P., Geraerts, N. & Marcoen, A. (2000) Memory complaints, coping, and well-being in old age: a systematic approach. The Gerontologist, 40, 540–8. Verhaeghen, P. & Marcoen, A. & Goossens, L. (1992) Improving memory performance in the aged through the use of mnemonic training: a meta-analytic study. Psychology and Aging, 7, 242– 51. Verhaeghen, P., Marcoen, A., & Goossens, L. (1993) Facts and fiction about memory aging. Journal of Gerontology: Psychological Sciences, 48, P157–171. Verhaeghen, P. & Salthouse, T.A. (1997) Meta-analyses of age-cognition relations in adulthood: estimates of linear and nonlinear age effects and structural models. Psychological Bulletin. 122, 231–49.

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Wecker, N.S., Kramer, J.H., Hallam, B.J. & Dellis, D.C. (2005) Mental flexibility: age effects on switching. Neuropsychology, 19, 345–52. Werner, P., Rosenblum, S., Bar-On, G. et al. (2006) Handwriting process variables discriminating mild Alzheimer’s disease and mild cognitive impairment. Journal of Gerontology: Psychological Sciences, 61B, P228–236. Winblad, B., Palmer, K., Kivipelto, M. et al. (2004) Journal of Internal Medicine, 256, 3, special issue: mild cognitive impairment – beyond controversies, towards a consensus: report of the International Working Group on Mild Cognitive Impairment. Zarit, S.H. & J.M. Zarit (1999), Mental Disorders in Older Adults. Fundamentals of Assessment and Treatment. Guilford Press, New York.

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Ageing and physical health Valerie Morrison University of Wales Bangor, Bangor, UK

This chapter addresses the topic of physical health in older people, a topic of central relevance to clinical psychologists given the prevalence of chronic disease in older populations who may receive clinical psychology services for other issues (such as depression, dementia, learning disability). There is relatively consistent evidence of a bidirectional relationship between physical comorbidity and mental health/wellbeing at all ages and evidence that a range of psychosocial variables moderate this relationship. First however, what is ‘health’ and do perceptions of health differ according to age?

WHAT IS HEALTH? Health is a word that most people will use, without realizing that it may hold different meanings to different people at different times in history, in different cultures and social classes, or even within the same family depending, for example, on age. Benyamini, Leventhal and Leventhal (2003) asked almost 500 older people to rate factors in importance to their subjective health judgements and found the most important factors related to physical functioning and vitality (being able to do what you need or want to do). However, the current health status of the sample influenced these judgements; for example, those in poor to fair health based their judgement on recent symptoms/indicators of poor health, whereas those in good health considered positive indicators (being able to exercise, being happy). Krause and Jay (1994) found that older respondents were more likely to refer to health problems when appraising their own health status than younger respondents. Health is considered differently when it is no longer present and, in older people at least, considered to be good when nothing is wrong! Health is, however, not a dichotomy (sick versus healthy) but a continuum, with illness at one extreme and optimal wellness, which some never achieve, at the other. Health is best viewed as a broad state, encompassing physical, psychological, emotional and social wellbeing; however, people frequently differ in how they define health. For example, the Health and Lifestyles Survey (Blaxter 1990) asked 9,000 members of the British general public to think of someone they knew who was very healthy, define who they were thinking of (including their age), consider what made them think of this person as ‘healthy’ and Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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consider what it was like when they themselves were healthy. Many interesting demographic differences emerged but of relevance here is the finding that many older women could simply not describe what it was like for them to ‘feel healthy’. This may have been because they could not remember what it was like to feel well, or because they were expressing pessimism about their condition to the interviewer (Radley, 1994, p. 39). Subjective health evaluations are commonly reached through comparison with others – older people when in poorer health are more likely to compare themselves with sameaged peers who may be thought to have normatively poorer health, thus making their own health status seem less unusual (for example, Kaplan & Baron-Epel, 2003). Assumptions of normative poor health amongst older people may affect their responses to symptoms and illness, as considered later. Health, therefore, is a subjective construct shaped by one’s own experience, age and normative beliefs. Disease on the other hand is considered ‘objective’ and generally follows a diagnosis from a health professional. What diseases are prevalent amongst older people?

AGEING AND DISEASE Many older people will remember the pre-antibiotic, pre-vaccination and poor sanitation days when the ‘top ten killers’ in society included TB, typhoid, and measles – all infectious diseases. In contrast, the major killers today include cancer, lung disease, and heart disease, which are not infectious but are linked to behaviours such as smoking or poor diet. Up to three-quarters of cancer deaths are attributable, in part, to our behaviour (Peto & Lopez, 1990). People live longer with illnesses that previously they would have died from and this brings with it a greater likelihood of physical illness and impaired function. The World Health Organisation has noted from surveys of people over 65 years old living in developed countries that half report good health, less than a quarter report poor health and about 40% have a limiting illness or disability. Less than a third of those aged over 75 years report being in good health (WHO, 1998). In the UK, the Medical Research Council’s Cognitive Function and Ageing Study (MRC CFAS – see Brayne et al., 2001) provides a profile of illness, cognitive and functional impairment, and illness morbidity in a representative sample of over 13,000 older people, examined by age groups (65–69 years; 70–74 years; 75–79 years; 80–84 years; 85–89 years; over 90 years). The most common physical illnesses reported were arthritis and hypertension, with one or more physical illness (excluding cancer) present in the majority (ranging from 80–93%), with a general trend towards increased percentage by age, although not for males. Cognitive impairment increased dramatically with age, from 1% of 65–69 year old males, and 0.9% females, to 5% of males and 11.5% of females in 80–84 year olds, rising to 18.4% males and 40.5% females over age 90. In terms of functional impairment (defined as inability to carry out activities of daily living such as dressing, feeding, bathing), percentages rose from 3% to 44% in males, and from 4.9% through 60.3% in females. Generally females reported greater morbidity and a steeper rise in morbidity as they age. Narrowing and hardening of the arteries (coronary atherosclerosis and arteriosclerosis, i.e. coronary arterial disease or CAD) is considered almost universal in those aged 70 years or over, although it is generally of nonclinical severity. Where symptoms do occur they present as either stable angina, or as acute events such as heart attack or unstable angina. Those aged over 75 years account for 65% of CAD deaths (Cowell, Newby & Boon, 2004).

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Few studies, however, have examined the psychosocial impact of CAD or its treatments in older patients, such as the impact on quality of life (QoL) of regular use of beta blockers, aspirin or angina symptom medication. In fact, Cowell and colleagues note that many drug trials exclude the over 75s (a situation similar to that reported in cancer care – see Brewster et al., 2006; Peake et al., 2002), despite limited evidence of negative effects of treatment on this age group. Hypertension, another important risk factor for heart disease, is thought to be present in approximately 70% of the older population, yet this generally ‘silent’ disease suffers from low levels of medication adherence (see below, pp 61–62). A large proportion of older people also suffer from sensory losses – for example hearing loss or visual impairment (which can increase the risk of falls). Physical disability is also common. A survey of over 10,000 people aged over 65 years found that 11% of men and 19% of women had a physical disability (38% of these being aged over 85 years), 21% required continuous care, and 62% required some form of daily care (Medical Research Council CFAS, 1998). The higher prevalence of disability in women, as with morbidity, in part reflects that women are over-represented in older age groups. It is worth noting that not all of those with a physical disability are fully dependent on others for their care and in fact the majority live in the community (with implications for family members as discussed later). Whilst many of the diseases described above are chronic in outcome, some have a gradual onset, for example rheumatoid arthritis, and others an acute onset, for example traumatic brain injury caused primarily by falls (Rakier et al., 1995) or heart attack. Acute onset illnesses allow little time for the patient or their family to adjust to their changed physical (or cognitive) status. The increased incidence of disease amongst older people arises in part due to degenerative processes of ageing cells and organs, in part to the effect of longstanding health-damaging behaviours such as smoking and in part because older people may respond to symptoms differently from younger people. For example, expectations of poor health as part of ‘ageing’ can result in poor healthcare maintenance as this is regarded as pointless; loss of mobility, poor foot health or poor digestion may be considered inevitable and unavoidable and so some older people may not respond to symptoms as they should (Leventhal & Prohaska, 1986; Sarkisian et al., 2001). As the number of those aged over 60 is likely to increase from 10% to 20% (11% to 19% in the over 80s) by 2050, chronic disease and disability in older people will make growing demands on healthcare systems (United Nations Secretariat, 2002).

BEHAVIOUR AND HEALTH The effects of health-damaging behaviours such as excessive alcohol consumption, smoking, overconsumption of fatty foods, and health protective or enhancing behaviours such as exercise, screening uptake, restricted intake of fatty foods, are cumulative. The longer we engage in such behaviours, the greater the effects. The behaviours are also multiplicative, with health risk or benefit increasing with performance of a greater number of behaviours. Many diseases have a behavioural component (for example, smoking and a high cholesterol diet contribute to heart disease, many cancers, and stroke; lack of exercise contributes to heart disease) and are more common in middle age and later life than among younger people. The biological processes associated with ageing do not obscure the impact of lifestyle on health.

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In terms of behavioural practices, older people generally exhibit lower levels of alcohol consumption than younger age groups, with problem drinking being influenced not only by physical health and access to social opportunities but by financial status (affluent older people have higher rates of drinking problems – Livingston & Hinchliffe, 1993). Increased alcohol consumption has also been attributed to loneliness, bereavement or physical symptomatology (Atkinson, 1994). In terms of smoking, whilst in the 1950s approximately 80% of British men and 40% of British women smoked, this reduced by 1998 to approximately 39% of men and 33% of women (Peto et al., 2000). In developed countries overall, it is estimated that just under 30% of males smoke, and slightly less women, with higher percentages seen in some areas of Europe and lower figures in developing countries where tobacco economies are smaller. In much of Eastern and Western Europe, the US, Canada and Australia, smoking behaviour is thought to have peaked and a downturn has begun, typical of what has been reported in the UK (Lopez, Collishaw & Piha 1994; see also Steptoe & Wardle, 2004). This significant downturn in smoking over past decades is associated with a decrease in lung cancer rates, although not in women where the increased incidence of lung cancer is, in part, attributable to the increased prevalence of women smoking since World War II. Smoking remains at high levels amongst older people – a population who generally initiated smoking before medical evidence as to its damaging effects on health was clear and publicly available. In terms of exercise, in developed countries we are all becoming increasingly sedentary, a trend reflected in increased obesity incidence amongst young and old. Exercise tends to decline in old age, perhaps out of a fear of falling or perhaps in the belief that it will overexert joints or heart – many older individuals underestimate their own physical capacities. In addition to exercise benefiting the cardiovascular system, regular exercise reduces the likelihood of developing osteoporosis, a disease characterized by a reduction in bone density due to calcium loss, which leads to brittle bones, a loss of bone strength and an increased risk of fractures. One in three women and one in twelve men over the age of 50 have this potentially disabling condition. Regular exercise, particularly low impact exercise or weight-bearing exercise such as walking and dancing, is important to the maintenance of peak levels of bone density during adulthood. Additional benefits to muscle strength, coordination and balance can be gained from resistance-strengthening exercise, which in turn can particularly benefit older individuals by reducing the risk of falls (Tinetti, Richman & Powell, 1990) and subsequent bone fractures. Exercise can also benefit those experiencing cognitive decline as a result of ageing or dementia – Cotman and Engesser-Cesar (2002) reported that physical activity was associated with delays in age-related neuronal dysfunction and degeneration often associated with Alzheimer’s disease (for example, memory lapses, limited attention). Evidence is limited regarding older peoples’ levels of exercise, in part because many surveys simply compare people under 65 years old with those over 65; thus data pertaining to older people, particularly the ‘very old’ (85+) is lacking. However one study (Skelton et al., 1999) found that whilst 18% of men and 20% of women aged 50 to 54 years were participating in activity at least once a week, only 9% of men and 4% of women aged 80 years or more were doing so. The proportions exercising to a level that would be likely to produce health benefits are significantly lower again. Contrary to popular opinion, however, it is never too late to change life’s bad habits in order to increase the likelihood of spending old age in good health! Bratzler, Oehlert and Austelle, (2002) reviewed the impact of smoking on older people in terms of increased morbidity, disability and death and provided a strong argument as to the continued need for

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health promotion efforts to target smoking cessation in order to enhance quality of life and longevity. Evidence of the health gains of smoking cessation in older samples includes, for example, the American Cancer Society Cancer Prevention Study II (Taylor et al., 2002), which reported a significant decrease in age-specific mortality rates for former smokers as compared to current smokers, with the benefit being present in those aged over 60 years, and even in those who stopped smoking when aged 70 to 74 years. Although older people may be hard to persuade to change, because many attribute the negative health consequences of smoking to general ageing, or because many are highly dependent on the behaviour, interventions that combine age relevant risk information with support are likely to be as effective as similar interventions in younger populations. Exercise behaviour is inevitably influenced by factors such as current health status and physical functioning, access to facilities, and even personal safety concerns or fear of falling (Tinetti, Richman & Powell, 1990). However exercise can take place in the home and need not be excessively strenuous to obtain benefit. Exercise-based interventions have been shown to benefit older people. For example, the 12-year death rate amongst a nonsmoking male sample (61–81years) was halved in those who walked more than 2 miles per day (21.5% died), compared to those who walked less (43% died). Furthermore, the incidence of cancer and heart disease was lower amongst those who walked more and this effect remained even when other common risk factors such as alcohol consumption and blood pressure were controlled for (Hakim et al., 1998). In addition to health risk or protective behaviours there are health behaviours that influence the actual experience of illness, such as healthcare-seeking behaviour and subsequent adherence to treatment recommendations. Many people regularly experience symptoms but there is huge variability between individuals when it comes to attending to or then reporting symptoms. Although 70% to 90% of individuals have, at some time, a condition that could be diagnosed and treated by a health professional, only about one-third will actually seek medical attention. With age one might expect increased awareness of one’s internal organs, their ‘normal’ functions and sensations and thus more timely seeking of medical attention when something seems wrong; however, research evidence does not consistently support this. In relation to discovering potential symptoms of breast cancer, older people have been found to present to services later than the middle aged (Grunfeld et al., 2003; Ramirez et al., 1999). Other studies, however, report quicker presentation of older individuals to healthcare professionals; this has been interpreted as a need to remove uncertainty, whereas middle-aged individuals may attempt to minimize their problems until they worsen or fail to disappear naturally (Leventhal & Diefenbach 1991). Age differences appear to exist in whether or not bodily signs are perceived as symptoms of illness, although the type of bodily sign plays a larger role. For example, acute onset of severe pain tends to result in quicker seeking of medical attention across all age groups, whereas in older populations many minor or common symptoms are commonly attributed, at least initially, to ageing. Older people may generally seek healthcare in response to symptoms but do they respond to healthcare recommendations appropriately in terms of adhering to treatment regimes? Relatively low levels of adherence to treatment recommendations are reported across a wide range of health states, treatments, and ages with up to 60% of people with chronic disorders, and 50% of older patients poorly adherent to treatment (Dunbar-Jacob, Burke & Pucznski, 1995). Amongst older people, nonadherence may be intentional or unintentional – for example, nonadherence due to poor recall of instructions, forgetfulness or confusion,

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or as a deliberate means of avoiding unpleasant side-effects or drug interactions, which shows an element of informed choice (McElnay & McCallion, 1998). It has been suggested that because older people tend to have more chronic diseases than younger people, any differences in unintentional nonadherence may reflect the complexity of taking multiple prescriptions rather than age (Lau et al., 1996). However, evidence does not consistently find that the majority of older people take multiple medicines and in fact, under-prescribing to the older patient may be occurring in relation to common illnesses such as hypertension or COPD (chronic obstructive pulmonary disease/emphysema – McGraw & Drennan, 2004). People do not adhere to medication for a variety of reasons, including the simple fact that many do not believe in the efficacy or the necessity of the medicine (Horne & Weinman, 1999). Preventative rather than curative or symptom control medications are generally less well adhered to because benefits are not immediately evident (e.g. asthma – Rand & Wise 1994), as are medications for symptom-free conditions (e.g. hypertension, Mallion et al., 1998). Mood, cognitive function, lifestyle, the presence of someone else in the home, are all factors shown to influence adherence, as are aspects of the medication or treatment itself such as its complexity, duration, presence of side effects, and aspects of the doctor-patient communication and information provision. Whatever the reason for nonadherence, there is no doubt that it can have adverse effects on an individual’s health status, and it is perhaps no surprise that in the UK the Department of Health (2001) has made the improvement of medication use amongst older people a priority for National Health Service (NHS) and social care service development.

BEING ILL AND ILLNESS OUTCOMES Chronic illness raises a number of issues that the person may have to face, for example: dealing with symptoms and possibly pain; concern about an uncertain future; changes in self-image and self-esteem; lowered mood; issues of maintaining control over health and life in general (for example, not becoming dependent on others) as well as over the illness and its treatment; potential loss of quality of life, and finally changed relationships with family and friends. The symptoms of illness are many and varied, range from transient to persistent, disruptive to nondisruptive, visible and invisible, painful and not painful. Persistent, disruptive, novel (to the person) and painful symptoms are more likely to lead a person to seek medical help. Many ill older people express fears about their future. Chronic, disabling or lifethreatening illness can create anxieties about becoming a burden on others if disabled, about the costs of nursing care, and about dying in pain or alone. Chronic illness can also bring about a sense of ‘loss of self’, which is exacerbated by the necessity of living a restricted life due to symptoms, experiencing social isolation due to physical limitations, or fearing others’ response to their ‘new state’ (Charmaz, 1991). Negative responses of others can contribute to perceiving oneself as being a burden on others. As Radley (1994, p. 148) notes ‘The problems of chronic illness are to do with retention and loss, not just of “self” but of a way of life” (see also Chapter 2, this volume). Given this, it is perhaps surprising to discover that, for some individuals, illness is perceived as bringing benefits (see below). One aspect of the illness experience associated with feelings of loss of ‘self’ is that of a loss of personal control – in this context control over one’s illness, treatment, one’s recovery, or

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one’s life in general. Locus of control (LoC) refers to where a person places responsibility for events; Rotter (1966) proposed that LoC could be internal (events are seen as under one’s own control), or external (events are seen as under the control of luck, God’s will, or other people). Maintaining a belief in a degree of internal control has been associated with maintained wellbeing amongst older people (Rodin & Timko, 1992), although results from the Australian Longitudinal Study of Ageing did not support this (see Luszcz, 1996). Illness and disability, treatment, hospitalization, and entry into a nursing home are all situations associated with some degree of loss of personal control. Actual, or even just perceived, loss of control, is associated with depression and apathy, and amongst nursing home residents a simple allocation of control to residents, for example, in choosing when certain activities occur, has been shown to benefit mood (Rodin & Langer, 1977; see also Wallston, 1989). Wallston notes however that it is important to give control only to those that want it – and not everyone does. In the context of decision-making regarding one’s treatment for example, older people have been found more willing to relinquish control to the health professionals than younger people (Auerbach, 2001). Mood disruption is common in those living with chronic illness, pain or disability and, for many, the significant levels of depression and/or anxiety experienced will be long lasting and pervasive. For example, amongst stroke patients assessed by the author, significant levels of emotional distress (anxiety and/or depression) persisted for many months post-stroke, with illness cognitions – patient satisfaction with health care and confidence in recovery – adding to disease features in predicting depression at 6 months and 3 years post-stroke (Morrison, Johnston, MacWalter, 2000; Morrison et al., 2005). Depression and anxiety is also found in heart-attack patients following hospital discharge, often persisting up to a year later (Lane et al., 2002). The direction of association between pain or disability and depression is unclear in that persistent pain and its consequences, or living with a disability, can trigger depression, but depression in turn can increase the attention paid to bodily symptoms or functional limitations that may exacerbate the illness experience (Bair, et al., 2003). Unfortunately the presence of depression and anxiety can also impede engagement in treatment or rehabilitation efforts: depressed people are less likely to attend cardiac rehabilitation classes than nondepressed ones, and depression and anxiety impede behavioural change (Lane et al., 2000). Depression, however, is neither inevitable nor always at a severe level. Furthermore, Penninx et al. (1998) in a prospective study of cancer patients, found that whereas depression declined over the year following a cancer diagnosis, this was not paralleled with an increase in well-being or positive affect – suggesting that depressed mood is not simply the converse of well-being (Stommel et al., 2004). Many illnesses can compromise a person’s quality of life. According to the World Health Organization Quality of Life (WHOQOL) working group (1993, 1994), QoL is defined as people’s perceptions of their position in life in relation to their cultural context and the value systems of that context and in relation to their own goals, standards and expectations. It is a broad multidimensional concept affected by an individuals’ physical and mental health, level of independence, quality of social relationships, and social integration, as well as the more recently added category (WHOQOL, 1998) of personal, religious and spiritual beliefs. Maintaining QoL and promoting healthy, positive and successful ageing is increasingly important given the ageing population of most societies (Grundy & Bowling, 1999). The goal of healthy ageing approaches is to minimize dependency (physical and/or emotional), which, in turn, it is hoped, will reduce the ‘costs’ to society of healthcare provision to this population. As Boini et al. (2004, p. 4) succinctly put it, ‘physicians now have the

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opportunity to add life to years, as well as adding years to life.’ Many factors combine to reduce perceived quality of life, such as pervasive and persistent pain, the effects of which are reflected in prevalent depression, disability, and use of healthcare. However it has been suggested that rather than assuming that disease, disability and handicap are indicative of a persons’ quality of life, these should instead be considered as potential influences upon it (McKenna, 2004), that may or may not affect perceived QoL, depending on the extent to which that person rates them as important to that QoL judgement (Cox, 2003). For some individuals the inability to perform valued activities as a result of impairment or disability may be considered as a ‘fate worse than death’ (Ditto et al., 1996), while others will continue to find meaning and purpose in life in spite of disablement. Studies of older people have found the domains of importance in life to be good physical functioning, having relationships with others, and maintaining health and social activity. Compared to younger samples, older people are more likely to mention independence, or the fear of losing it and becoming dependent on others, in their QoL judgements (Bowling, 1995). Blane et al. (2004) examined influences on QoL in over 300 individuals aged between 65 and 75 years and found that serious and limiting health problems were most strongly predictive of QoL, with housing security and receipt of welfare or nonpension income, and (for men only) years out of work also predictive. When a limiting illness was involved the domains of importance appeared to become more focused on physical functioning and activity, social support and social contact. The type of illness was less important to QoL than the level of resultant physical disability, with limitations in activity or role being a negative predictor of both mental and physical QoL scores. Nonlimiting disease, such as diabetes, did not affect QoL. It must be noted that cognitive dysfunction such as memory impairment or attentional deficit seen in those with neurological illness, such as Parkinson’s disease, may affect the ability to make QoL judgements relative to past QoL. Overall, regardless of disease type, interventions to enhance QoL should aim to improve and maintain physical functioning (which is challenged more by some conditions than others) and facilitate the continuation of role functioning. In addition to affecting the quality of life of the person with an illness, illness can impose many changes on the families of those affected. Family members are essentially involved in providing support to each other in good times or bad, but during times of illness, some may fall into the role of primary caregiver, providing assistance above and beyond that which is ‘normal’ for their role (preparing a meal for partners may be usual, whereas feeding them may not be). There are approximately 5.7 million UK-based informal (unpaid, nonprofessional) carers, aged predominantly between 45 and 64 years, and of whom 3.3 million are female (Department of Health, 1999). Worldwide, there are thought to be around 50 million people who provide care for a sick, disabled or elderly family member during any one year, 30% of whom are likely to be over the age of 65 themselves (US Department of Health and Human Services, 2001. The ‘problems’ of those being cared for are predominantly chronic disease (approximately 40%), with significant proportions caring for problems relating to ageing, dementia, mobility problems, and mental, emotional or neurological problems. Where the health problem predominates in older samples (e.g. stroke, Alzheimer’s disease), many carers are spouses who are themselves of considerable age and who commonly also suffer physical ill health. Up to three-quarters of carers experience distress at a level significantly higher than that found in age-matched controls and their physical health and life satisfaction is generally found to be lower than in noncaregivers. For example, amongst those caring for a relative following a stroke, levels of depression

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have been shown to be two to three times those found in noncaregivers (Morrison, 1999; Scholte op Reimer et al., 1998). Caregiving issues are addressed extensively in Chapters 16 and 32, this volume, but of relevance here are findings that the ongoing mental, physical and social demands of caregiving have been found to cause stress amongst many older caregivers, which manifests itself immunologically or physically. For example, compared to healthy controls, older carers have shown reduced wound healing; increased illness episodes and reduced antibody buildup following vaccination (Kiecolt-Glaser et al., 1994, 1995, 1996). Interestingly, an extremely large study of the physical health, psychological wellbeing, and quality of life of over 11,000 Australian women aged between 70 and 75 (Lee, 2001) did not find a significant difference in physical health between those identified as caregivers (10%), and those not so identified (90%). The caregivers did, however, differ significantly in terms of their emotional wellbeing and perceived stress levels, supporting consistent findings as to the emotional impact of caregiving. Physical and emotional effects of caregiving and care receiving are influenced by the type of caring actions involved and whether or not they are perceived as helpful or unhelpful. Patients who perceived their carers’ actions as unhelpful have been found to have more negative perceptions of themselves and their spouses and greater depression (Clark & Stephens, 1996). Although helpful actions have generally been shown to occur more frequently than unhelpful actions, unhelpful actions appear to have a more strongly negative effect on wellbeing, than helpful actions have a positive effect (Norris, Stephens & Kinney, 1990). Across a range of conditions, helpful actions include providing practical assistance and expressions of love, concern and understanding, and unhelpful actions include for example, minimizing the situation, being unrealistically cheerful, underestimating the illness effects on the patient, or being critical or over-demanding (Jones & Morrison, 2005). Additionally, over-caring or being overly helpful and solicitous (e.g. taking over a person’s chores, encouraging them to rest) can act as a form of operant conditioning in which patients are rewarded for exhibiting ‘sick-role’ behaviours. The quality of a relationship is also important to couples facing illness, as shown by Banthia et al. (2003) in a study of coping and dyadic adjustment in couples where the male had prostate cancer. They found that whereas low patient mood was generally associated with avoidant coping and high levels of intrusive thinking, patients reporting strong pre- and post-illness relationships experienced less distress than those in less strong relationships, even when they engaged in these maladaptive coping strategies. Amongst older generations currently, expectations of providing care to a spouse in one’s later years may predominate; however, with increasingly high proportions of women in the workplace and with rising retirement ages, this ‘willingness to care’ or acceptance of a caring role, may change in the future (Joshi, 1995). To conclude this section it is important to note that neither all carers nor all those with serious illness consider the experience wholly negatively. Assessing reported benefits of chronic or indeed life-threatening illnesses is becoming a growth area of health research. For example, several studies identify caring satisfactions such as feeling a sense of fulfilment, feeling useful, increased feelings of closeness, or increased day-to-day interactions as a result of patients and carers spending more leisure time together (e.g. Kinney et al., 1995; Kramer, 1997). Orbell, Hopkins and Gillies (1993, p. 153) noted that caring ‘may also be appraised as positive, to the extent that it provides affirmation of valued aspects of the self.’ In relation to patient benefits, studies have identified becoming more accepting of

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things in life, having closer relationships with family or friends, resuming previously lost interests and hobbies, and it has been suggested that such benefits could actually lead to reported QoL levels higher than those reported by healthy individuals (Tempelaar et al., 1989; see also Schulz & Mohamed, 2004). Improved relationships with significant others is a commonly reported ‘benefit’, although there remains a need for research to investigate the effects of relationship quality on emotions and adjustment. DeVellis, Lewis and Sterba (2003) have suggested that good relationships within couples might work towards the creation and maintenance of positive emotions (in patients and/or carers), which may benefit adjustment. The outcomes described in this section are not inevitable consequences of illness because humans are unique individuals who bring to the illness experience their own inner resources, thoughts, emotions and behaviours, each of which exert an influence on responses to, and consequences of, illness. Humans also differ in the external resources they have available to them, for example, in terms of social support. These internal and external psychosocial resources are described next.

PSYCHOSOCIAL MODERATORS OF ILLNESS OUTCOME Many cognitive, emotional and social factors have been found to moderate (or mediate) the negative effects of illness; those thought to be particularly pertinent to working with older populations are addressed here.

Personal Control and Self-efficacy Beliefs Perceived control is a subjective construct that is inherent in many terms such as mastery, hardiness, or self-efficacy, with the general principle being that people differ in the extent to which they believe they can deal with or manage aspects of their life. Mastery and hardiness are considered traitlike, as was LoC described earlier, but self-efficacy (cf. Bandura, 1977, 1997) goes beyond a generalized belief in responsibility or control, to a belief in one’s own ability to carry out a specific required action that is under one’s control. Health locus of control (Wallston, Wallston & DeVellis, 1978) is specific to health and may or may not reflect a person’s general LoC. Wallston’s health locus of control scale Wallston, Wallston and DeVellis (1978) assesses three subscales: External (chance, luck, fate), Powerful Other control (health professional control), and Internal control. The resulting Multidimensional Health Locus of Control scale (MHLC) predominates in health psychology research. Individuals with an Internal or a Powerful Others HLC who also value their health are more likely to behave in a health protective manner, whether that be, in the case of Internal LoC, commencing an exercise programme, or in the case of Powerful Others HLC, going to a local health clinic for dietary advice. Powerful Others beliefs may, however, detract from an individual taking active responsibility by virtue of individuals with such beliefs being overreliant on medical ‘cures’. Perceived internal control over health or illness has been associated with a range of positive outcomes in older populations, for example, psychosocial adjustment and improved quality of life (e.g. Kempen, Jelicec & Ormel, 1997), and healthy behaviours and use of healthcare services (e.g. Menec & Chipperfield, 1997). If individuals do not value their health however, it is thought that they are unlikely to engage in health-protective behaviours (even if they feel they have control over their health) because

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health is not a high priority (e.g. Wallston & Smith, 1994). Few studies measure health value, however, and most assume its invariate presence. Older people have generally been found to value their health, whilst at the same time having low expectations regarding good health, reduced desire to seek control and an acceptance of present circumstances – which appears to be adaptive (Johnson & Barer, 1992). However among community-dwelling older people, levels of mastery over their environment was relatively high and moderated the negative association between disability and depressed mood (Jang et al., 2002). The sample in this study however were on average younger (mean 72 years) than Johnson’s ‘oldest-old’ sample, suggesting that control may serve different purposes at different ages and in different contexts. Further illustrating the benefits of control, Johnston et al. (1999) found that perceptions of internal control over recovery (Recovery Locus of Control scale, Partridge & Johnston, 1989) significantly predicted recovery from disability six months following an acute stroke (mean age 69 years). However, when attempting to reveal the process by which internal control influenced physical recovery (i.e. increased independence on activities such as walking, dressing, toileting), the authors did not find an association between baseline internal control beliefs (10–20 days post-stroke onset) and subsequent (one month post-discharge) frequency or intensity of rehabilitation exercises. Reassessing this group of stroke survivors at three years post-stroke found that the beneficial effects of internal control beliefs persisted, predicting long-term physical recovery, but not emotional recovery/reduced distress (Johnston et al., 2004; Morrison et al., 2005). The importance of such findings is that, unlike neurological impairment or age (both predictors of stroke outcome), control beliefs can be modified. For example, in a clinical study, Jensen, Turner and Romano (2001) found that among a group of patients with chronic pain enrolled in a pain-management programme, increased perceptions of control over pain accompanied reductions in reported pain. People who feel able to control their pain seem to experience less pain than those that do not hold this belief and this has opened up interesting avenues of intervention. An experimental study by Fisher and Johnston (1998) also showed that perceived control beliefs can influence painrelated behaviours. They allocated patients with chronic pain to conditions in which their perceptions of control over their pain were either increased by asking patients to talk about times when they had been in control of their pain, or decreased by asking them to recount periods when their control was low. Patients in the increased control condition performed a lifting task for significantly longer than those in the decreased control condition. One caveat, however: working to introduce, maintain or enhance beliefs in internal control in situations where such beliefs are unrealistic (for example when facing permanent disability, or inevitable progression of disease) may lead to problem-focused coping efforts that fail. This perceived failure could in turn contribute to feelings of depression or helplessness, whereas accepting the reality of having no control may lead to more adaptive coping responses and better psychosocial adjustment. Alternatively people should be encouraged in such situations to take control over aspects of their life or illness that are controllable (Thompson et al., 1993).

Optimism Optimism is viewed as a dispositional tendency to view things in a positive manner (is your glass half-full or half-empty?) and to expect positive outcomes (Scheier & Carver, 1985,

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1992). Optimism has been associated with a vast array of positive outcomes in both healthy and nonhealthy populations across all ages. Recent research suggests that optimism is not simply the converse of pessimism, but may in fact be an independent construct. For example, Robinson-Whelen et al. (1997) found that, amongst middle-aged and older adult caregivers (for people with a progressive dementia) and noncaregivers, optimism was highest among noncarers, and carers tended to show greater pessimism. They also found that optimism operated independently of pessimism in terms of predicting self-rated health after one year, particularly in the older sample, and in noncaregivers. Amongst the stressed caregivers optimism was more strongly associated with negative health outcomes, suggesting perhaps an element of unrealistic optimism was present. In the whole sample pessimism, but not optimism, predicted anxiety, perceived stress and poorer self-rated health at follow-up.

Coping Lazarus’s transactional model has had the most profound impact on the conceptualization of coping (cf. Lazarus 1993a, 1993b; Lazarus & Folkman 1984). This model proposes that psychological stress results from an unfavourable person-environment fit, in other words when there is a perceived mismatch between demands and resources as perceived by an individual in a specific situation. Individuals are required to alter either the stressor (for example, by removing oneself from the situation) or how it is interpreted (for example, by reappraising the event as having less potential for harm) in order to make it appear more favourable. This effort is called coping – a dynamic process involving a myriad of cognitions and behaviours, which arise from the appraisals of events, resources, and the emotions these elicit. Coping is therefore anything a person does to reduce the impact of a perceived or actual stressor, and because appraisals elicit emotions, coping can operate to either alter or reduce the negative emotions, or directly target the ‘objective’ stressor. Coping does not inevitably succeed in eliminating the stressor, but the individual may manage it by mastering new skills to deal with it, tolerating it, reappraising it or minimizing it. Coping is concerned, therefore, with trying to achieve adaptation and can be cognitive or behavioural, active or passive, problem-focused or emotion-focused (for a fuller explanation of coping theory and strategies see Morrison & Bennett, 2005). Suffice it to say here that, in relation to physical health outcomes such as management of symptoms, recovery, or even survival, a huge body of research has worked towards finding coping strategies that can be considered ‘adaptive’. Generally it has been shown that problem-focused coping is more likely to be adaptive when there is something that can be done to alter or control the stressor event, whereas emotion-focused coping is more likely to be adaptive where the individual has little control over the event or if their resources to deal with it are low. For example, on receipt of a diagnosis of a life-threatening illness, emotion-focused coping may lead to better adjustment and denial has, in fact, been shown to be an effective coping response amongst women with breast cancer (e.g. Greer et al., 1990). However there was an interaction between time and strategy, illustrated by the finding that whilst early denial was associated with positive adjustment, ongoing denial was associated with poorer 15-year survival outcomes, as were coping responses reflecting stoic acceptance, anxious preoccupation with the illness, and helplessness/hopelessness. Many studies point to age differences in coping responses, whereby older people tend to use emotion-focused coping strategies more than problem-focused strategies (e.g. Folkman et al., 1987) and this

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may relate back to findings regarding the relinquishing of control. Possibly for some older people dealing with how situations make them ‘feel’ rather than trying to deal with the stressor will be more adaptive. Aiding in this adaptive process are the ‘significant others’ around a person with illness, and this topic is addressed next.

Social Support We all need support. There is ample evidence that social support effectively reduces distress during times of stress (for example, Cutrona & Russell, 1990), and furthermore the lack of social support during times of need can itself be very stressful, particularly for people with high needs for social support but insufficient opportunities to obtain it e.g. older people, the recently widowed, and other victims of sudden, severe or uncontrollable life events (Penninx et al., 1997). Because of gender differences in life expectancy, historically more older women have lived alone than older men, but it has been observed that male life expectancy may be catching up with that of women, due to men’s life expectancy increasing and women’s not (as a result of increased health risk behaviour and increased exposure to stress in the workforce, Bretingham, 2005). Social isolation is a risk therefore faced by both genders and has been associated with poorer survival and reduced QoL among older populations. Evers et al. (2003) found that patients with rheumatoid arthritis (mean age 57) who had good social support reported less pain and better physical functioning than those who were less well supported. This may be the result of a number of factors; for example, people who are well supported may be encouraged by friends to take part in more activities, which may maintain function and prevent joint stiffening. Amongst older people social support has proven equally beneficial; for example, satisfaction with support received was predictive of reduced depression even when faced with disability (Jang et al., 2002) and having access to support resources contributed to quicker recovery from medical events, injury or illneses (Kempen et al., 2001)

CONCLUSION This chapter has addressed many topics central to health psychology research in a relatively brief manner – it is hoped, however, that their relevance to the clinical psychology of older people is clear. Physical ill health has serious psychosocial consequences for patients as well as those around them. Older adults may increasingly be seen by clinical psychology services as a result of their having to live with chronic, painful or disabling conditions. Where possible, intervening early to promote behavioural change in order to benefit physical health, which may indirectly benefit mental health, should be encouraged. There are many socio-cognitive models of health behaviour change that I have not addressed here but which are available to clinical psychologists. However for most older people behaviour change may not be relevant or desired. Addressing depression by implementing a cognitive behavioural intervention will, if successful, impact on many life domains such as enhanced coping skills, improved QoL and possibly even survival and may have benefits for carers, including reduced strain or stress and enhanced mood or QoL. Psycho-oncology services are expanding in many NHS trusts, as is the willingness of medical practitioners to refer

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patients on to psychological services (where they exist). Pain management programmes, where many individuals with chronic pain are taught to manage their pain using psychological approaches in order to minimize the amount of pain-killing medication they need to take and to maintain or improve their quality of life, have benefited from a long-standing contribution from clinical psychologists. Some of the moderating variables described in this chapter, such as self-efficacy, may usefully be assessed in order to maximize the likely effectiveness of such interventions. Awareness of the potential psychological consequences of physical illness and of the array of psychosocial variables that may moderate these consequences, will enable appropriate and thorough assessment prior to a clinical psychologist developing a treatment programme.

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Cowell, S.J., Newby, D.E. & Boon, N.A. (2004) Coronary artery disease in the elderly patient. Reviews in Clinical Gerontology, 14, 105–18. Cox, K. (2003) Assessing the quality of life of patients in phase I and II anti-cancer drug trials: Interviews versus questionnaires. Social Science and Medicine, 56, 921–34. Cutrona, C.E. & Russell, D.W. (1990) Type of social support and specific stress: toward a theory of optimal matching, in Social Support: An Interactional View (eds B.A. Sarason, I.G. Sarason & G.R. Pierce). Wiley, New York. Department of Health (1999) Caring about Carers: A National Strategy for Carers. London: Department of Health. Department of Health (2001) Medicines for Older People: Implementing Medicines-related Aspects of the National Service Framework for Older People. London: Department of Health. De Vellis, R.F., Lewis, M.A. & Sterba, K.R. (2003) Interpersonal emotional processes in adjustment to chronic illness, in Social Psychological Foundations of Health and Illness (eds J. Suls & K.A. Wallston). Blackwell Publishing Ltd, Malden MA, pp. 256–87. Ditto, P.H., Druley, J.A., Moore, K.A., et al. (1996) Fates worse than death: the role of valued life activities in health state evaluations. Health Psychology, 15, 332–43. Dunbar-Jacob, J., Burke L.E. & Puczynski, S. (1995) Clinical assessment and management of adherence to medication regimens, in Managing Chronic Illness: A Biopsychosocial Perspective (eds P.M. Nicassio & T.W. Smith). Washington, DC: American Psychological Association. Evers, A.W., Kraaimaat, F.W., Geenen, R. et al. (2003) Pain coping and social support as predictors of long-term functional disability and pain in early rheumatoid arthritis. Behaviour Research and Therapy, 41, 1295–310. Fisher, K. & Johnston, M. (1998) Emotional distress and control cognitions as mediators of the impact of chronic pain on disability. British Journal of Health Psychology,3, 225–36. Folkman, S., Lazarus, R.S., Pimley, S. & Novacek, J. (1987) Age differences in stress and coping processes. Psychology and Ageing, 2, 171–84. Greer, S., Morris, T., Pettingale, K. & Haybittle, J. (1990) Psychological response to breast cancer and 15 year outcome. Lancet, 335, 49–50. Grundy, E. & Bowling, A. (1999) Enhancing the quality of extended life years. Identification of the oldest old with a very good and very poor quality of life. Aging and Mental Health, 3, 199–212. Grunfeld, E.A., Hunter, M.S., Ramirez, A.J. & Richards, M.A. (2003) Perceptions of breast cancer across the lifespan. Journal of Psychosomatic Research, 54, 141–6. Hakim, A.A., Petrovitch, H., Burchfield, C.M. et al. (1998) Effects of walking on mortality among non-smoking retired men. New England Journal of Medicine, 338, 94–9. Horne, R. & Weinman, J. (1999) Patients’ beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness. Journal of Psychosomatic Research, 47, 555–67. Jang, Y., Haley, W.E., Small, B.J. & Mortimer, J.A. (2002) The role of mastery and social resources in the associations between disability and depression in later life. The Gerontologist, 42, 807–13. Jensen, M.P., Turner, J.A. & Romano, J.M. (2001) Changes in beliefs, catastrophizing, and coping are associated with improvement in multidisciplinary pain treatment. Journal of Consulting and Clinical Psychology, 69, 655–62. Johnson, C.L. & Barer, B.M. (1992) Patterns of engagement and disengagement amongst the oldestold. Journal of Aging Studies, 6, 351–64. Johnston, M., Morrison, V., MacWalter, R. & Partridge, C. (1999) Perceived control, coping and recovery from disability following stroke. Psychology and Health, 14, 181–92. Johnston, M., Pollard, B., Morrison, V. & MacWalter, R. (2004) Functional limitations and survival following stroke: psychological and clinical predictors of 3 year outcome. International Journal of Behavioral Medicine, 11, 187–96. Jones, E. & Morrison, V. (2005) Making sense of illness: Stroke patients and their partners’ accounts of stroke. Proceedings of the British Psychological Society, 13(1), 69. Joshi, H. (1995) The labour market and unpaid caring: conflict and compromise, in The Future of Family Care for Older People (eds I. Allen & E. Perkins). HMSO, London. Kaplan, G. & Baron-Epel, O. (2003) What lies behind the subjective evaluation of health status? Social Science and Medicine, 56, 1669–76. Kempen, G.I.J.M., Jelicic, M. & Ormel, J. (1997) Personality, chronic medical morbidity, and healthrelated quality of life among older persons. Health Psychology, 16, 539–46.

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Kempen, G.I.J.M., Scaf-Klomp, W., Ranchor, A.V. et al. (2001) Social predictors of recovery in late middle-aged and older persons after injury to the extremities. Journals of Gerontology Series B, 56, S229–36. Kiecolt-Glaser, J.K., Glaser, R., Gravenstein, S. et al. (1996) Chronic stress alters the immune response to influenza virus vaccination in older adults. Proceedings of the National Academy of Science USA, 93, 3043–7. Kiecolt-Glaser, J.K., Malarkey, W.B., Cacioppo, J.T. & Glaser, R. (1994) Stressful personal relationships: immune and endocrine function, in Handbook of Human Stress and Immunity (eds R. Glaser & J.K. Kiecolt-Glaser). Academic Press, San Diego, pp. 217–44. Kiecolt-Glaser, J.K., Marucha, P.T., Malarkey, W.B. et al. (1995) Slowing wound healing by psychosocial stress. Lancet, 4, 1194–6. Kinney, J.M., Stephens, M.A.P., Franks, M.M. & Norris, V.K. (1995) Stresses and satisfactions of family caregivers to older stroke patients. Journal of Applied Gerontology, 14, 3–21. Kramer, B.J. (1997) Gain in the caregiving experience. Where are we? What next? Gerontologist, 37, 218–32. Krause, N.M. & Jay, G.M. (1994) What do global self-rated health items measure? Medical Care, 32, 930–42. Lane, D., Carroll, D., Ring, C. et al. (2000) Effects of depression and anxiety on mortality and qualityof-life 4 months after myocardial infarction. Journal of Psychosomatic Research, 49, 229–38. Lane, D., Carroll, D., Ring, C. et al. (2002) The prevalence and persistence of depression and anxiety following myocardial infarction. British Journal of Health Psychology, 7, 11–21. Lau, H.S., Beuning, K.S., Postma-Lim, E. et al. (1996) Non-compliance in older people: evaluation of risk factors by longitudinal data analysis. Pharmacy World and Science, 18, 63–8. Lazarus, R.S. (1993a) From psychological stress to the emotions: a history of changing outlooks. Annual Review of Psychology, 44, 1–21. Lazarus, R.S. (1993b) Coping theory and research: past, present and future. Psychosomatic Medicine, 55, 234–47. Lazarus, R.S. & Folkman, S. (1984) Stress, Appraisal, and Coping. Springer, New York. Lee, C. (2001) Experiences of family caregiving among older Australian women. Journal of Health Psychology, 6, 393–404. Leventhal, H. & Diefenbach M. (1991) The active side of illness cognition, in Mental Representations in Health and Illness (eds J.A. Skelton & R.T. Croyle). Springer-Verlag, New York, pp. 247–72. Leventhal, E.A. & Prohaska, T.R. (1986) Age, symptom interpretation and health behavior. Journal of the American Geriatric Society, 34, 185–91. Livingston, G. & Hinchliffe, A.C. (1993) The epidemiology of psychiatric disorders in the older people. International Review of Psychiatry, 5, 317–29. Lopez, M., Collishaw, N.E. & Piha, T. (1994) A descriptive model of the cigarette epidemic in developed countries. Tobacco Control, 3, 242–7. Luszcz, M.A. (1996) Control beliefs and well-being of very old Australians. International Journal of Psychology, 31: 170. Mallion, J.M., Baguet, J.P., Siche, J.P. et al. (1998) Compliance, electronic monitoring and antihypertensive drugs. Journal of Hypertension (Supplement), 16, S75–79. Matarazzo, J.D. (1982) Behavioral health’s challenge to academic, scientific and professional psychology. American Psychologist,37, 1–14. McElnay, J.C. & McCallion, C.R. (1998) Adherence and the older people, in Adherence to Treatment in Medical Conditions (eds L. Myers & K. Midence). Harwood Academic Publishers, Amsterdam, pp. 223–53. McGraw, C. & Drennan, V. (2004) Older people and medication management: from compliance to concordance. Reviews in Clinical Gerontology, 14, 145–53. McKenna, S.P. (2004) Assessing the quality of life in phases I and II anti-cancer drug trials: Interviews versus questionnaires by Cox K. Letter to the editor. Social Science & Medicine, 58, 659–60. Medical Research Council Cognitive Function and Ageing Study (1998) The description of activities of daily living in six areas of England and Wales. Psychological Medicine, 28, 319–35. Menec, V.H. & Chipperfield, J.G. (1997) The interactive effect of perceived control and functional status on health and mortality among young-old and old-old adults. Journal of Gerontology: Psychological Sciences, 52B, P118–126.

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Morrison, V. (1999) Predictors of carer distress following a stroke. Reviews in Clinical Gerontology, 9, 265–71. Morrison, V. (2001) The need to explore discrepant illness cognitions when predicting patient outcomes. Health Psychology Update, 10, 9–13. Morrison, V. & Bennett, P. (2005) An Introduction to Health Psychology. Pearson/Prentice Hall, Harlow. Morrison,V., Johnston, M. & MacWalter, R. (2000) Predictors of distress following and acute stroke: disability, control cognitions and satisfaction with care. Psychology and Health, 15, 395– 407. Morrison, V., Pollard, B., Johnston, M. & MacWalter, R. (2005) Anxiety and depression three years following stroke: demographic, clinical and psychological predictors. Journal of Psychosomatic Research, 59, 209–13. Norris, V.K., Stephens, M.A. & Kinney, J.M. (1990) The influence of family interactions on recovery from stroke: help or hindrance? Gerontologist, 30, 535–42. Orbell, S., Hopkins, N. & Gillies, B. (1993) Measuring the impact of informal caring. Journal of Community and Applied Social Psychology, 3, 149–63. Partridge, C. & Johnston, M. (1989) Perceived control of recovery from physical disability: Measurement and prediction. British Journal of Clinical Psychology, 28, 53–9. Peake, M.D., Thompson, S., Lowe, D., Pearson, M.G on behalf of Participating Centres (2002) Ageism in the management of lung cancer. Age and Ageing, 32, 171–7. Penninx, B., Van Tilburg, T., Deeg, D. et al. (1997) Direct and buffering effects of social support and personal coping resources in individuals with arthritis. Social Science and Medicine, 44,393–402. Penninx, B.W., Guralnik, J.M., Gahor, M. et al. (1998) Chronically depressed mood and cancer risk in older persons. Journal of the National Cancer Institute, 90, 1888–93. Peto, R. & Lopez, A.D. (1990) Worldwide mortality from current smoking patterns, in Tobacco and Health 1990: The Global War. Proceedings of the Seventh World Conference on Tobacco and Health (eds B. Durston & K. Jamrozik). Health Department of Western Australia, Perth. Peto, R., Darby, S., Deo, H. et al. (2000) Smoking, smoking cessation, and lung cancer in the UK since 1950: combination of national statistics with two case-control studies. British Medical Journal, 321, 323–9. Radley, A. (1994) Making Sense of Illness: The Social Psychology of Health and Illness. Sage, London. Rakier, A., Guildburd, J.N., Soustiel, J.F. et al. (1995) Head injuries in the elderly. Brain Injury, 9: 187–93. Ramirez, A.J., Westcombe, A.M., Burgess, C.C. et al. (1999) Factors predicting delayed presentation of symptomatic breast cancer: a systematic review. Lancet, 353, 1119–26. Rand, C.S. & Wise, R.A. (1994) Measuring adherence to asthma medication regimes. American Journal of Respiratory and Critical Care Medicine, 149 (supplement), 69–76. Robinson-Whelen, S., Kim, C., MacCallum, R. & Kiecolt-Glaser, J.K. (1997) Distinguishing optimism from pessimism in older adults: Is it more important to be optimistic or to not be pessimistic? Journal of Personality and Social Psychology, 73, 1345–53. Rodin, J. & Langer, E.J. (1977) Long-term effects of a control-relevant intervention with the institutionalized aged. Journal of Personality & Social Psychology, 35, 897–902. Rodin, J. & Timko, C. (1992) Sense of control, ageing, and health. In: Aging, Health and Behavior (eds M.G. Ory, R.P. Abeles & P.D. Lipman). Newbury Park London: Sage Publications. Rotter, J.B. (1966) Generalized expectancies for internal versus external control of reinforcement. Psychological Monographs, 80, 1–28. Sarkisian, C.A., Liu, H.H., Ensrud, K.E. et al. (2001) Correlates of attribution of new disability to ‘old age’. Journal of the American Geriatric Society, 49, 134–41. Scheier, M.F. & Carver, C.S. (1985) Optimism, coping and health: assessment and implications of generalized outcome expectancies. Health Psychology, 4, 219–47. Scheier, M.F. & Carver, C.S. (1992) Effects of optimism on psychological and physical well-being: theoretical overview and empirical update. Cognitive Therapy Research, 16, 201–28. Scholte op Reimer, J., De Haan, R.J., Rijnerts, P.T. et al. (1998) The burden of caregiving in partners of long-term stroke survivors. Stroke, 29, 1605–11. Schulz, U. & Mohamed, N.E. (2004) Turning the tide: benefit finding after cancer surgery. Social Science & Medicine, 59, 653–62.

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Skelton, D.A., Young, A., Walker, A. & Hoinville, E. (1999) Physical Activity in Later Life: Further Analysis of the Allied Dunbar National Fitness Survey and the Health Education Authority National Survey of Activity and Health. HEA, London. Steptoe, A. & Wardle, J. (2004) Health-related behaviour: prevalence and links with disease, in Health Psychology (eds A Kaptein & J. Weinman). BPS/ Blackwell, Oxford, pp. 21–51. Stommel, M., Kurtz, M.E., Kurtz, J.C. et al. (2004) A longitudinal analysis of the course of depressive symptomatolgy in geriatric patients with cancer of the breast, colon, lung or prostrate. Health Psychology, 26, 564–73. Taylor, D.H., Hasselblad, V., Henley, S.J. et al. (2002) The benefits of smoking cessation for longevity. American Journal of Public Health, 92, 990–6. Tempelaar, R., de Haes, J.C., de Ruiter, J.H. et al. (1989) The social experiences of cancer patients under treatment: a comparative study. Social Science & Medicine, 29, 635–42. Thompson, S.C., Sobolew-Shubin, A., Galbraith, M.E. et al. (1993) Maintaining perceptions of control: finding perceived control in low-control circumstances. Journal of Personality and Social Psychology, 64, 293–304. Tinetti, M.E., Richman, D. & Powell, L. (1990) Falls efficacy as a measure of fear of falling. Journal of Gerontology, 45, P239–43. United Nations Secretariat (2002) The ageing of the world’s population. Population Division, Department of Economic and Social Affairs, United Nations Secretariat. Available from www.un.org/esa/socdev/ageing/agewpop.htm. US Department of Health and Human Services (2001) The Characteristics of Long-term Care Users. Rockville: Agency for Healthcare Research and Quality. AHRQ Publications, Rockville, MD. Wallston, K.A. (1989) Assessment of control in healthcare settings, in Stress, Personal Control and Health (eds A. Steptoe & A. Appels). John Wiley & Sons, Luexmbourg, pp. 85–105. Wallston, K.A. & Smith, M.S. (1994) Issues of control and health: the action is in the interaction, in Health Psychology: A Lifespan Perspective, (eds G. Penny, P. Bennett., M. Herbert). Harwood, London. Wallston, K.A., Wallston, B.S. & DeVellis, R. (1978) Development of multidimensional health locus of control (MHLC) scale. Health Education Monographs, 6, 160–70. WHOQOL Group (1993) Study protocol for the World Health Organisation project to develop a quality of life assessment instrument (WHOQOL). Quality of Life Research, 2, 153–9. WHOQOL Group (1994) Development of the WHOQOL: rationale and current status. Monograph on Quality of Life Assessment: cross-cultural issues-2. International Journal of Mental Health, 23, 24–56. WHOQOL Group (1998) The World Health Organisation Quality of Life Assessment (WHOQOL). Development and psychometric properties. Social Science and Medicine, 46, 1569–85. WHO (1998) The World Health Report 1998 – Life in the 21st Century: a vision for all. WHO, Geneva.

5

Death, dying and bereavement Jan R. Oyebode University of Birmingham, Birmingham, UK

Multidisciplinary bereavement research has flourished since the late 1990s. There has been open debate and discussion about traditional understandings of grief and a number of new models have been proposed. Empirical research has been published on a wide range of topics related to bereavement and some evidence-based evaluations of psychological interventions are beginning to emerge. Research into the psychology of death and dying in old age has not been as prolific but concern with improving cancer care and the continued growth of hospice related services have led to developments in psycho-oncology and palliative care psychology, which may inform those working with older people. The first section of this chapter will focus on death and dying, summarizing their context in the twenty-first century and considering the psychology of death and dying in relation to ageing and then specifically in relation to those with terminal illness. Turning to bereavement, the chapter will then introduce the context, before summarizing what is known about the impact of bereavement, presenting major models for understanding and considering interventions and evidence for their effectiveness.

DEATH AND DYING IN THE TWENTY-FIRST CENTURY The demographic transition that occurs as countries develop and become wealthier has a huge impact on the nature of death, dying and bereavement. This transition is from societies with high rates of births and deaths in early life, small numbers of elderly people and low average life expectancy to societies where there are lower birth rates, high life expectancies and a larger proportion of older people. The focus in this chapter is on the demographic and social context in the more developed world. However, for those working in pre- or mid- transition societies, the position of older people facing death and societal experiences of bereavement is very different, leading to distinct psychological and service issues and needs. Seale (2000) gives a good summary of changing patterns of death and dying.

Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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For people living in developed countries, the most common experience, given life expectancy at birth of 78 years in both Europe and in the US (WHO, 2006) is for death to come at the end of a long life. Gender differences continue to affect life expectancy with women outliving men by an average of five years across most of the developed world (WHO, 2006). The World Health Organisation indicate that healthy life expectancy in these countries lags by 7–10 years behind actual life expectancy for men and women (WHO, 2006). The most common causes of death in those aged 65 years or more in the EU (Niederlander, 2006), US (WHO, 2006) and Australia (Australian Bureau of Statistics, 2006) are circulatory disease, cancers and respiratory diseases. Death therefore, is truly an old-age issue and, given the degenerative nature of the most common causes, dying is often inextricably associated with a pre-existing period of disability. This backdrop interacts with the social context regarding living conditions for older people. The majority in developed countries live with a spouse or alone. Families provide much support but those who become more disabled by physical health or dementia may spend their last months or years in the residential sector. Many people express a preference to die at home (Hays et al., 2001; Tang & McCorkle, 2003) or in hospice care (Thomas, Morris & Clark, 2004). However, only 23% of people with cancer in the UK die at home and 16.5% in hospices, compared with 55.5% in hospitals and about 5% in residential and nursing homes (Ellershaw & Ward, 2003). Overall, figures for 1998 indicate that 66% of all deaths in the UK took place in hospital (WHO, 1998). Legal and ethical matters, such as consideration of assisted deaths and living wills (for example see Seymour et al., 2004), and spiritual issues (see, for example, Kirby, Coleman & Daley, 2004; Koenig, McCullough & Larson, 2001) also influence the experience of death and dying, though space precludes coverage of these issues here. Clinical psychologists have a contribution to make to psychological care for those facing death in acute general hospitals, hospice and palliative care settings, residential and nursing homes as well as working with people living in the community.

Facing Death and Dying During Ageing Theories of lifespan development (see also Chapter 2, this volume) place considerable emphasis on the need for older people to become reconciled to death. Rocke and Cherry (2002) name acceptance of one’s own mortality as one of the two main tasks of older adult life. Erik Erikson (Erikson & Erikson, 1998) outlined the major developmental task of old age as being to achieve integrity, through reflecting on and accepting oneself and coming to terms with one’s death. Joan Erikson, living into her 90s, proposed a ninth stage in which the challenge was to move from a material and personal to a spiritual and cosmic focus, a transition she called transcendence (Erikson & Erikson, 1998). This is echoed more recently in the application of ideas from the ‘terror management’ perspective (McCoy et al., 2000). McCoy et al. propose that older people can no longer deny death through the use of the defences used earlier in life. This provokes a push to psychological re-organization that entails transcendence of the self and enables a continued sense of wellbeing. Research does not as yet seem to have addressed how older people come to terms with death but there is some evidence that older people are less anxious about death than middleaged people. A good review and synthesis of the literature on death anxiety is given by

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Neimeyer, Wittowski and Moser (2004). Thorsen and Powell (1990) found a linear decline across the adult life span in a sample of 346 US adults aged 18–88 years, whereas Gesser, Wong and Reker (1987–88) reported a more complex trend with an increase in middle age and subsequent decline in later life. In a systematic review of 49 studies of the relationship between death anxiety and age in older samples, Fortner and Neimeyer (1999) concluded that there was no further general decrease across the later decades of life. In their review, they found that, ego integrity, assessed in 27 studies, was the variable that had the highest correlation with levels of death anxiety (r = −0.30), with greater degrees of ego integrity being related to lower fear of death. Greater death anxiety was associated with higher levels of psychological and physical health problems. There was some indication that those living in institutional care were more anxious about death and possibly that those with higher levels of religious belief had lower levels of death anxiety. Using a qualitative approach for an in-depth analysis of 54 British participants aged 65–80 years, Field (2000) found that most did not have a strong fear of their own death but were more concerned about the possible nature of their death. The most common method of assessing death anxiety is through questionnaires. Three of the most widely used scales, all developed in the US, are the Templer Death Anxiety Scale (Templer,1970), which assesses a single underlying construct, the revised CollettLester Fear of Death and Dying scale (Lester & Abdel-Khalek, 2003), which assesses four factors of death and dying of self and others; and the Multi-dimensional Fear of Death Scale (MFODS) (Hoelter, 1979), which assesses eight factors (fear of the dying process, of the dead, of the unknown, of conscious death, of premature death, of being destroyed, for the body after death, for significant others). Single factor scales are brief and adequate for simple surveys whilst multi-factorial scales can be useful in differentiating the nature of death anxiety. Tomer (2000) puts forward an evidence-based model for understanding death anxiety in which three factors are proposed as having a direct influence, these being regret related to past life, future-related regret and meaningfulness of death. These three factors are in turn influenced by the nature of the person’s beliefs about the self and the world and by the salience of death. The salience of death may promote the use of particular coping strategies which modify beliefs and thus lower the level of anxiety about death. Tomer (2000) and McCoy et al. (2000), drawing on previous research, hypothesize about the ways in which older people may learn to accommodate the knowledge of their own mortality. Tomer suggests that life review/reminiscence and future life planning may be helpful and a strong and reinforced identification with one’s own culture or worldview is also seen as protective. Finally, aspects of self-transcendence including ‘generativity’ (i.e. contributing to the future through leaving a legacy), self-detachment and identification with the wider universe may also reduce death anxiety. This latter process is also emphasized by McCoy et al. who describe transcendence as giving people a sense of a type of immortality. Some of these ideas, especially life review, are widely used in clinical practice but there is potential for others to be explored and evaluated for therapeutic use.

Facing Death and Dying During Terminal Illness For a substantial number of older people, the transition from living with disability to living with dying is not clear cut. This is likely to be the case, for example, for those who die from

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circulatory disease, including stroke and from respiratory disease, in which life may have been threatened but there may be uncertainty about the future illness trajectory. By contrast, for those with cancer, a period of terminal illness may be better defined, which may be why the needs of this group are reflected in palliative care and hospices. (See Chapter 21 for a discussion of end-of-life care for people with dementia.) Research suggests that the majority of those even in terminal stages of illness have a wish to live. For example, in an Australian study of 256 terminally ill cancer patients 84% had no wish to hasten death (Kelly et al., 2003). In a US study of 200 terminally ill patients 91.5% had no pervasive wish to die (Chochinov et al., 1995) and in a Canadian sample of 224 people with cancer, 91% had no desire to hasten death (Jones et al., 2003). One study (Hines et al., 2001) of 142 elderly kidney dialysis patients found a clash of paradigms between the patients and the staff. Nursing staff wanted patients to consider life and death decisions about whether, for example, to continue with treatment whereas patients were more concerned with how to cope with their dialysis. A qualitative study using in-depth interviews with 15 people dying in a hospice found that participants for whom death was imminent nevertheless focused on tasks of living rather than those of dying (Claiborne, 2003). Some studies have looked into the concept of a ‘good death’. Tong et al. (2003) used focus group techniques to elicit domains that constitute a good death for a US community sample. They found 10 relevant areas of consideration including physical comfort, burden on family, location and environment, presence of others, issues of prolongation of life, communication, completion and emotional health, spiritual care, cultural concerns and individualized care. It may be when some of these are not catered for or not possible that dying people have a wish to hasten death. Factors that have been found to be associated with the wish to have a hastened death include depression, pain and low family support (Chochinov et al., 1995), hopelessness (Chochinov et al., 2005; Jones et al., 2003), stage of disease (Jones et al., 2003), burden to others and dignity (Chochinov et al., 2005). All these studies are with cancer patients so it is not clear how those with other illnesses, including those with advanced dementia, might feel. Another large-scale US study (McCarthy et al., 2000), which followed people with cancer as they came very close to death, found that the will to live ebbed away in the very latter days of life. During their last three days, people expressed a preference to have treatment for comfort rather than prolongation of life and two-thirds no longer wished to be resuscitated. Research into coping with terminal illness and imminent death thus emphasizes the strength of the wish to live in most people even in the face of dying. It might be suggested that professionals sometimes start to detach themselves from supporting the continued living of dying people but this may not meet the needs of clients. However, for quite a small minority there may be a wish to hasten death. Professionals therefore need to be open to discussing both continued living and wishes for death. There has been little systematic work to evaluate the role of clinical psychology or the impact of psychological interventions for older people who are dying. This may be partly because of the sensitivity of the area. However, Werth, Gordon and Johnson (2002) argue persuasively, drawing on available literature, that mental health professionals could and should make valuable contributions to end-of-life care. They propose six possible roles of advocate, counsellor, educator, evaluator, multi-disciplinary team member and researcher. Regarding psychological input at a more systemic level, some research highlights the lack of training, preparation and support that staff in the residential and nursing home sectors

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have for dealing with death, dying and bereavement (Albinsson & Strang, 2002; Katz, Siddell & Komaromy, 2000). This would appear to be an area of unmet need that clinical psychologists might be able to address. Albinsson and Strang suggest that a transfer of the palliative philosophy of care might be helpful.

THE CONTEXT OF BEREAVEMENT IN THE TWENTY-FIRST CENTURY Widowhood is a common experience and this is the principal focus of research into bereavement in later life. In addition, for all who live to a good age, deaths of contemporaries including siblings, other relatives, friends and neighbours become a common, almost normative experience. Other types of bereavement in old age are less frequently experienced, recognized and researched. Some live to an age where they see their own children die, men may experience loss of their spouse and some people will experience the loss of a same sex partner. The latter in particular may lead to what has become known as ‘disenfranchised grief’ (Doka, 2002).

Developments in Research, Theory and Clinical Practice Research, theory and its application to intervention are comprehensively summarized in the ‘Handbook of Bereavement: Theory, Research and Intervention’ (Stroebe, Stroebe & Hansson, 1993) and the Handbook of Bereavement Research: Consequences, Coping and Care (Stroebe, Hansson, Stroebe & Schut, 2001). Bereavement, by definition, is the loss of a person through death. However, grieving, the emotional response to bereavement and loss, may start prior to bereavement and may affect and influence the relationship that will be lost. Thus facing death and issues of bereavement are closely intertwined. Grief may be a private individual affair and as clinical psychologists our views may be influenced particularly by ideas from the psychology of attachment and bonding in dyadic relationships. But bereavement happens for all who knew a person, not only the partner, and families tend to be the context for support and grieving. Beyond this, cultural factors both secular and religious influence the ways that grief is expressed and the way the dead are remembered. This section naturally reflects the existing post-bereavement, largely individual focus of psychological research but these other layers will be touched upon and should not be forgotten in our approaches to working with issues of bereavement.

The Impact of Bereavement Bereavement is known to have deleterious effects on mortality, physical and mental health, whereas more recent research shows that it may also lead to personal growth.

Mortality Mortality risk has been found to be increased in a number of studies following the death of a spouse (for example, Martikainen & Valkonen, 1996; Manor & Eisenbach, 2003) though

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this is not a universal finding (Cheung, 2000). Older women may be less vulnerable than those who are middle aged or younger (Martikainen & Valkonen, 1996; Smith & Zick, 1996) but older men are particularly at risk in the first six months following their loss (Bowling & Windsor, 1995). A Danish whole population study (Erlangen et al., 2004) found that there is a significant suicide risk for men over 80 years of age in the year after death of their spouse, this being five times higher than suicide risk in middle-aged married men.

Physical health Laditka and Laditka (2003) found that recently bereaved women in their longitudinal study had a 40% higher risk of hospitalization than married women. A study in the British Midlands of 100 bereaved spouses found that they visited their doctor significantly more in the 12 months following bereavement than prior to bereavement. However, prescriptions for both physical and mental health problems showed nonsignificant increases, implying that there was a perceived rather than an actual health need (Charlton et al., 2001).

Emotional and cognitive responses The impact of bereavement over time on emotional and cognitive responses in a sample of 350 widows is documented by Shuchter and Zisook (1993) who give a rich picture of its wide and varied nature. Emotional pain and disbelief affected a majority of their sample at 2 and 7 months post loss, with both showing a decline to about 50% by 13 months. In addition, significant minorities experienced loneliness, mental disorganization and helplessness. Beem et al. (2000) found in their sample of 69 middle-aged and older widows, that 4 months after bereavement the majority had a decrease in psychological functioning with positive scores across a range of psychiatric symptoms, including depression, agoraphobia, anxiety, hostility and somatization. Loneliness, not surprising after many decades of shared living, has been confirmed as a common reaction to spousal bereavement (Van Baarsen, 2002), with emotional loneliness decreasing during the 2.5 years after bereavement but social loneliness remaining constant (Van Baarsen et al., 2002). Shuchter and Zisook (1993) also surveyed aspects of the continuing relationship with the dead spouse noting that the majority had a sense of their spouse’s presence, maintained an interest in carrying out their wishes and found themselves identifying with their spouse even at 13 months following their bereavement.

Emotional growth and resilience Shuchter and Zisook (1993) found that over 75% of their sample at 13 months indicated that they felt self-sufficient and good about themselves. They reported that life had great richness, they tried to get the most from each day and looked forward to tomorrow. They also reported being more sensitive and 64% said they continued to surprise themselves by mastering new tasks. Gamino, Sewell and Easterling (2000) explored reactions in a sample of 85 people, average age 51 years, who had lost a significant other within the past three years. 63.5% said they had seen some good result from the bereavement they had experienced.

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Complex or traumatic grief About 15% to 16% of people continue to show high levels of grief and/or depression 13 months to 18 months following bereavement (Bonanno et al., 2002; Shuchter & Zisook, 1993) and early signs of complex grief may be linked with the development of worse mental health and general functioning at a later date (Ott, 2003; Silverman et al., 2000). Among those referred to specialist mental health services, bereavement is often significant. In one Canadian study (Piper et al., 2001), over 50% of 729 patients attending psychiatric outpatient clinics reported experiencing one or more significant bereavements. About one-third of the overall sample met criteria for moderate to severe complicated grief and had elevated levels of depression compared to the remainder. Their bereavement had taken place an average of 10 years previously and the authors conclude that this is evidence that long-term complicated grief should routinely be considered when people are assessed in psychiatric services. Grief that is not straightforward has variously been called pathological (Middleton et al., 1993) traumatic (Jacobs & Prigerson, 2000) and complicated (Hogan, Worden & Schmidt, 2003). Recent research has focused on delineating major depression, anxiety, PTSD and a syndrome of complicated grief as distinct syndromes (see Jacobs & Prigerson, 2001; Prigerson & Jacobs, 2001 for reviews; also Beolen, Van den Bout & De Keijser, 2003; Bonanno et al., 2002). Consensus criteria have been put forward in a US context with the aim of gaining formal recognition for complicated grief as a medical diagnosis. This is conceptualized as a single factor containing two symptom clusters related to separation distress and traumatic distress. The symptoms should persist for at least two months and interfere with more general aspects of daily functioning (Jacobs, Mazure & Prigerson, 2000; Prigerson et al., 1999). Others (for example, Hogan, Worden & Schmidt, 2003) argue that there is a lack of valid evidence for the concept of a dichotomy between normal and complicated grief, that evidence for this particular set of criteria is not sufficient and that there may be disadvantages in pathologizing grief.

Patterns of Response to Bereavement De Vries (1997), reviewing a series of articles on different types of kinship loss in later life, draws four general conclusions that highlight the complexity and diversity of reactions to bereavement. Firstly, that bereavement is a complex experience, which is multi-dimensional (incorporating a diversity of losses), multidirectional (having positive as well as negative impact) and takes place on multiple levels. Secondly, that bereavement is influenced by its personal, social and historical context. Thirdly, that the nature of the lost relationship has an especial influence. Finally, that the end point is hard to define, with recovery, adaptation or accommodation probably having a range of markers.

Bereavement of spouse An impressive, prospective study, reported by Bonanno et al. (2002) challenges the view that there is a normative increase in distress and a decline in wellbeing following bereavement. Bonnano and colleagues (2002) followed up, 6 months and 18 months after bereavement of

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their spouse, 205 older people, average age 72 years, who had originally been interviewed on average 3 years, 7 months prior to bereavement. Five principal patterns of response were found. These were ‘resilient’ (45.9%), ‘chronic grief’ (15.6%), ‘common grief’ (10.7%), ‘depressed-improved’ (10.2%) and ‘chronic depression’ (7.8%). The pattern of ‘resilience’ was not linked to low attachment or lack of emotional warmth but was associated with acceptance of death and a positive worldview. It was much more common than the pattern of a period of grief followed by adjustment which is often seen as normative. There was clear evidence that a substantial minority of the sample had chronic grief but also that this could be differentiated from those who had chronic depression, which described those who were depressed prior to the death as well as afterwards. Delayed grief, often cited as a form of complicated grief reaction, was only found in 3.9% of the sample.

Impact of bereavement of nonspousal relationships Older people bereaved of siblings, adult-children or grandchildren are not often viewed as primary grievers and their particular needs may not be recognized, this lack of recognition also being reflected in the lack of research. Loss of a sibling seems to be one of the least explored losses, despite the fact that nearly 10% of over 65s may have experienced the death of a sibling in the past year (Hays, Gold & Peiper, 1997). Yet the impact on perceived health, mood and functioning, in a US study of over 3,000 people bereaved of spouses, siblings and friends, was found to be similar to that experienced by spouses (Hays, Gold & Peiper, 1997). Bereavement of spouse or siblings in later life contrasts with the loss of children or grandchildren in that the latter deaths are untimely and non-normative. Moss, Lesher and Moss (1986) found that 10% of their sample had experienced the loss of a child since they reached the age of 60 years. Moss, Moss and Hansson (2001) summarize recent research as generally indicating that loss of an adult child provokes a more intense reaction than other deaths, though Arbuckle and De Vries (1995) found the impact to be similar for older people whether bereaved of a spouse or a child. There is evidence that mental and physical health is worse over a period of two years following bereavement of an adult child than in nonbereaved parents, though marital satisfaction may be higher (De Vries et al., 1997). In a scholarly review of research on the loss of a child across the lifespan, De Vries and Lana (1994) conclude that the impact of losing an adult child has particular meanings for those who are older adults, provoking survivor guilt, a sense of loss of heirs to the future and often increases a sense of vulnerability and fears of institutionalization. In relation to grandchildren, Fry (1997) in a sample of 152 found that emotional reactions were powerful but also found that survivor guilt was a strong influence on the range of reactions. Finally, studies show that the grief response to loss of a pet is similar to that to loss of a person with over a fifth of people still reporting at least one symptom of grief a year after their loss (Wrobel & Dye, 2003).

Family grief In a study of 102 families, where a member was dying of cancer, Kissane and Bloch (2002) found that distress levels reached clinical significance in 50% of patients, 33% spouses and

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25% of adult children. In this and a later study of 115 families, aspects of family functioning correlated with bereavement outcome at 13 months post-loss, accounting for 38% variance in grief, 64% in distress, 53% in depression and 46% in social adjustment. How families dealt with conflict, their communications and their cohesiveness were particularly influential.

Disenfranchised grief As mentioned earlier, reactions related to some types of loss may not be easily expressed or accepted. This applies to the grief of those who have suffered loss of a same-sex partner as well as the grief of those whose ex-partner or ex-spouse dies. In addition, the death of a person with advanced dementia may be in a nursing home and may bring relief that cannot be spoken or may bring grief that is not widely recognized.

Factors influencing reactions Given the evidence that a significant minority may experience a complex or traumatic response, it is important to consider factors that may put people at risk or that assist in adjustment. Moss, Moss and Hansson (2001) suggest four contextual factors specific to the impact of bereavement for older people. Older people may have less physiological resilience in the face of stress, social networks and access to social support may be limited and ageism may lead to ignoring of individual differences. Finally, the process of regulation of emotions may be different in older people who may be more accepting, less volatile and have a general dampening of emotional reactions. The Report on Bereavement and Grief Research by the Center for the Advancement of Health (2004) identifies three main pre-loss themes that may influence grief. Those with a closer marital relationship experience greater yearning than those with a conflictual relationship. Strained caregivers experience improvement in wellbeing following bereavement in comparison with nonstressed caregivers and noncaregivers and those who perceive the death as unexpected are more likely to experience complicated grief and depression. However, the latter finding was not supported in a recent, thorough longitudinal study of 210 widowed older people (Carr, House, Wortman, Nesse & Kessler, 2001). Those who expect the death may experience distressing anticipatory grief, associated with a higher intensity of anger and loss of emotional control than is the case in post-death grief (Gilliland & Fleming, 1998). A history of previous mental health problems may also predict more distress from bereavement (Gamino, Sewell & Easterling, 1998). Violent death, but not sudden death, appears to be related to the development of PTSD after bereavement (Kaltman & Bonanno, 2003). Following loss, attributions of self blame (Boelen, Van den Bout & Van den Hout, 2003a; Center for the Advancement of Health, 2004), other aspects of negative thinking (Boelen, Van den Bout & Van den Hout, 2003a) and behavioural and cognitive avoidance (Boelen, Van den Bout & Van den Hout, 2003b) have been found to be significantly related to the severity of traumatic grief and depression. A high level of focus on emotional processing is also associated with poorer adjustment (Center for the Advancement of Health, 2004).

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Deriving meaning from the bereavement and having strong spiritual and religious beliefs seem to be associated with better adjustment (Center for the Advancement of Health, 2004). Gamino, Sewell and Easterling (2000) found four factors associated with adaptation: saying goodbye prior to the death, ability to see some good resulting from the death, intrinsic spirituality and having spontaneous positive memories of the deceased. These factors may help in planning interventions to assist people to gain a positive outcome. Finding a means of saying a delayed goodbye, constructing a meaningful narrative, exploring and strengthening spirituality and stimulating positive continuing bonds may all be helpful strategies (Gamino et al., 2000). Social support, including that derived from Internet and email usage, has been tentatively found to protect against depression, PTSD and complicated grief (Vanderwerker & Prigerson, 2004).

Assessment of Grief and Reactions to Bereavement A number of scales have been developed to assist clinicians and researchers in the assessment of levels and patterns of grief. Neimeyer and Hogan (2001) provide a useful review of quantitative self-report scales. Of four general grief scales that they review, the 19-item Inventory of Complicated Grief (ICG) (Prigerson et al., 1995) is evaluated as having good initial psychometric data and as being potentially useful for assessing grief in bereaved spouses. The 30-item Inventory of Traumatic Grief (ITG) (Prigerson, Kasl & Jacobs, 2001) was designed to assess for complicated grief and may be useful to distinguish whether an individual has levels of grief that concur with the proposed consensus criteria for complicated grief. A further review of instruments designed to distinguish normal from pathological grief is provided by Tomita and Kitamura (2002).

Theoretical Developments During the late twentieth century, re-evaluation of the ‘received wisdom’ in relation to understanding of grief emerged as a strong theme (see, for example, Stroebe, 1992; Wortman & Silver, 1989). The criticism of the established position has itself been subject to critique and the interested reader is referred to Stroebe, Van den Bout and Schut (1994) for a good evaluative account. But there is no doubt that it has led to increasing acceptance of the degree of individual variation and to proposals for new ways of understanding bereavement. Thus, in contrast to the notion of linear stages or phases we have the idea of parallel processes of recovery-oriented and loss-oriented grief as put forward in Rubin’s (1999) two-track model of bereavement drawn mainly from the experience of Israeli parents coping with the loss of children and in the dual process model of coping with bereavement proposed by Stroebe and Schut (1999) and developed to understand coping with the loss of a partner; whilst focus on continuing bonds after bereavement (Klass, Silverman & Nickman, 1996) contrasts with the perceived necessity to relinquish emotional attachment to the deceased. Providing a general contrast to the largely intra-psychic focus of early work, Parkes (1993) and Walter (1996) place more emphasis on interpersonal and social aspects of grief. Parkes, building on his earlier work comparing reactions to loss of a limb with loss of a person, presents adaptation to bereavement as a psychosocial transition. Walter, drawing from his

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sociological background and personal experience, emphasizes the process of talking with others as fundamental to the construction of a narrative that enables the bereaved to find a way of integrating their memories of the person who has died into their continuing lives. More recently, some further integrative theories have been put forward such as Bonnano and Kaltman’s (1999) approach and that on meaning making by Neimeyer (2000). Of these ideas, those of continuing bonds, the dual process model and the more integrated approaches are perhaps most relevant to clinical psychology work with older people and each will be described further.

Continuing Bonds As noted earlier, Shuchter and Zisook (1993) carried out pioneering work on the nature of continuing emotional ties to the deceased and found that 13 months after bereavement, 63% of their sample reported feeling that their partner was with them at times, 65% reported wishing to continue to fulfil their spouse’s wishes, 34% continued to converse regularly with their partner and 33% said that they had grown more like their spouse. On the basis of their research, they suggested that it was not necessary to lose these ties through decathexis but to reintegrate the lost relationship into the ‘right place’. Klass, Silverman and Nickman (1996) present findings from a number of qualitative research studies that also demonstrate that many people who experience a ‘normal’ reaction to bereavement nevertheless maintain continuing bonds, with these fulfilling a number of positive functions including providing comfort and support and easing the transition to the future. However, there is also some indication that close relationships lead to higher levels of continuing bonds and higher levels of grief (Field, Gal & Bonnano, 2003), raising the possibility that continued bonds might be somehow part of unresolved intense grief. A wide range of expressions of continuing bonds has been reported. Some expressions appear to be quite concrete, such as using the deceased’s possessions to gain comfort whereas others such as focusing on memories appear more abstract or symbolic (Field et al., 1999). This may go some way towards explaining the contradictory findings. There is some indication that more concrete bonds are associated with greater concurrent distress whilst abstract bonds are associated with less concurrent distress (Field et al., 1999; Reisman, 2001). There is also some evidence that continuing bonds provoke different emotions depending on the time since bereavement. Field and Friedrichs (2004) report on a single case series carried out with 30 widows. They found that using continuing bonds seemed to cause a shift towards negative mood for widows who were just four months from their bereavement, although for widows whose had been bereaved more than 2 years continuing bonds provoked positive mood. This research indicates how usual it is for those who are bereaved to have continuing bonds with the deceased many years after their death. It also demonstrates that such bonds may provide a helpful source of comfort, support and advice for those who continue living, particularly after the immediate pain of separation has passed. Given this, it is important when working with people who are bereaved to recognize continuing bonds as a possible resource. Where a person is clinging to concrete reminders and psychological intervention is warranted, it may be helpful to work towards the remaking on a more symbolic level, rather than breaking, of continuing bonds.

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Dual Process Model of Coping with Bereavement Stroebe and Schut (1999) provide a scholarly analysis of the strengths and shortcomings of existing bereavement and general stress and coping theories, and propose a dual process model, further elaborated within Stroebe and Schut (2001). Their model includes an analysis of the main stressors and foci of coping, plus a proposal about the dynamic cognitive process that is involved in adapting to these stressors. The main stressors are divided into two clusters, labelled loss-oriented and restorationoriented. Loss-oriented stressors include those arising from the pain of separation and loss of the relationship and loss-oriented coping focuses on this loss. It may involve experiencing the negative emotions of yearning, ruminating, pining and grieving and positive emotions associated with the warmth of good memories or the relief of the person no longer suffering. Restoration-oriented stressors arise from the need to live life without the deceased, so may include stressors associated with taking on practical tasks, reorganizing ways of living and developing a new identity. Associated emotions may again be negative, such as fear and anxiety, or positive, such as pride. The cognitive process of response is seen as a dynamic, fluctuating process of oscillation between coping with or addressing these two types of stressors, sometimes at will and sometimes in response to triggers. Thus there is a process of regulation of the degree of confrontation and avoidance in a pattern that is manageable for the bereaved person. Within each sphere of stress it is postulated that there is a further layer of oscillation between negative affect or appraisal and positive affect or appraisal. A degree of balance is seen as necessary to work through grief and maintain adequate coping efforts. Stroebe and Schut (1999, 2001) propose that over time the focus of coping would change from a predominant loss orientation to a more restoration-oriented focus and appraisal would move from a mainly negative to a more positive approach. However, rather than suggesting processing in terms of stages, the process would be expected to be dynamic and changing. This is supported in a study of the relative influences of loss-oriented and restoration-oriented variables on the reactions of 200 men, aged 60 years and over during the second year following bereavement (Richardson & Balaswamy, 2001). The study found that both types of variables were important for those bereaved 13–18 months and for those bereaved 19–24 months previously, but loss-orientation was more prominent for those nearer to their bereavement. Both types of variable influenced well-being. The dual process model can assimilate many ideas within extant models and accommodate many research findings but it is also novel in addressing the dynamic nature of the cognitive process. It is a broad model that is flexible enough to accommodate individual, gender based or cultural emphases in grieving. It also provides a way of conceptualizing complicated bereavement responses as arising from problems in the process of oscillation. In clinical settings, the model may be helpful in prompting exploration of the balance and fluctuation across sources of stress, focus of coping and type of appraisal. It may, for example, be possible to establish whether a person experiences stress related to both loss and restoration issues. If this is the case, then the professional may be able to find out whether the person addresses both types of stressors or tends to focus more on one than the other. The fluctuation between positive and negative meaning making may also be helpful to discuss. In relation to loss-orientation, for example, this might involve establishing whether

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a person seems to avoid becoming immersed in difficult feelings, whether they ruminate continually on their loss or whether they move between approach and avoidance.

The Four-component Model Rather than having a central focus around the stresses of bereavement and processes of accommodation to these, Bonnano and Kaltman’s (1999) model draws out, from the literature, four major components that influence adjustment to bereavement, which taken together may provide a comprehensive framework for understanding. The context of the loss includes consideration of the circumstances of the death, the personal history of the bereaved person and cultural influences, allowing an assessment of factors that could lead to vulnerability. Under consideration of the subjective meanings are issues of how the bereaved person makes sense of the reasons for the loss and impact of the loss on their lives. The changing relationship refers to the way the person is grieving for the lost relationship and the way in which the emotional ties are being transformed over time. The fourth factor of coping and emotional regulation processes focuses on how the individual is managing their emotions and whether they are using positive or negative appraisal. One aspect of this approach that may be useful in clinical practice is the prompt to consider this wide range of influences that may have an impact on an individual’s response to bereavement. Those concerning the context particularly are more explicitly emphasized in this model than in the dual process model.

Meaning Reconstruction Robert Neimeyer (2000; 2005) argues that at the core of adaptation to bereavement, particularly for those who have experienced a traumatic loss, is the human need to find meaning. Neimeyer (2000) takes a social constructionist approach to meaning making. He puts forward six dimensions that can be considered part of the process of reconstructing meaning and for each he cites supporting research evidence. The first is that recreating meaning includes not only the search for meaning in the death but also an existential consideration of the continuing meaning of life for the survivor. Second, meanings related to the bereavement are likely over time to be integrated with or extended to wider frameworks for living, i.e. that this is a fundamental process that may lead to a shift in aspects of worldview. Third, whilst meanings are often personal they are also constructed in a social context. Fourth, the way in which meaning is reconstructed is influenced by cultural discourses as well as the more personal and familial context. Fifth, the meaning a bereaved person attributes to a death may not be accessible on a rational, cognitive level but may be more readily accessed through less direct strategies such as the use of metaphor. Finally, ‘meaning making is more an activity than an achievement’ (p. 550). In other words, it is a dynamic process that changes over time and is likely to combine aspects of reality and subjectivity. This approach implies that it may be helpful in therapeutic intervention to apply the notion of making meaning in a subtle, flexible, responsive manner with those who are struggling to find meaning. In the light of research on the effectiveness of interventions, Neimeyer (2000)

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proposes that therapists should not push the minority who are not engaging in a search for meaning into such a quest as they may have alternative effective ways of coping.

Psychological Interventions There have been a number of recent reviews of the effectiveness of psychosocial interventions for bereavement (Center for Advancement of Mental Health, 2004; Jordan & Neimeyer, 2003; Raphael, Minkov & Dobson, 2001; Schut et al., 2001). Schut et al. (2001) point out four major limitations in research: that control groups are not always used (vital for bereavement research since recovery over time is likely), participants are not always randomly assigned to conditions and there are low recruitment rates and high levels of dropout. The body of well-designed research studies is therefore limited. Various layers of intervention have been distinguished. Raphael, Minkov and Dobson (2001) distinguish between universal preventive, selective preventive, for those at high risk, indicated preventive, for those with high levels of distress and treatment that is offered to those with complex grief. Recent reviews concur in their conclusions that ‘the more complicated the grief process appears to be or become, the better the chances of interventions leading to positive results’ (Schut et al., 2001, p. 731). Studies of ‘universal preventive’ interventions have largely looked at group interventions, often mutual help groups but also crisis intervention, family therapy, psychotherapy, cognitive and behavioural interventions (Schut, Stroebe, Van Den Bout and Terheggen, 2001). Schut et al. conclude that ‘there is hardly any empirical support for their effectiveness’ (p. 720). It has been suggested that this is because offering help routinely at an early stage may interfere with the person making use of their own resources and finding their own appropriate way of coping. A recent uncontrolled study (Caserta, Lund & Obray, 2004) on the impact of a restoration rather than a grief-focused group intervention with 84 widows and widowers has produced promising findings. Two early controlled studies provide some evidence for the effectiveness of ‘selective preventive’ interventions through psychosocial support (Parkes, 1981) and widow-to-widow support targeted towards those at high risk (Vachon et al., 1980). Schut, Stroebe, Van den Bout and De Keijser (1997) undertook an ‘indicated’ intervention, providing seven individual sessions for men and women with high levels of distress who had been bereaved of a spouse 11 months earlier. They found the greatest reduction in distress with a problem-focused coping intervention, which had significantly more impact at followup than no intervention, with an emotion-focused coping intervention having an intermediate position. They excluded those over 60 years, but the type of approach would seem eminently adaptable for older people. They found clear gender differences in response, with men benefiting most from the emotion-focused intervention and women from the problem-focused intervention, possibly because these introduced men and women to approaches they had not used earlier of their own accord. Kissane and colleagues, in Melbourne, Australia, have embarked on a carefully constructed randomized controlled trial of family focused grief therapy for 81 vulnerable families in which a member is dying of cancer (Kissane & Bloch, 2002). The therapy consists of six to eight sessions with a variable number conducted pre- and post- loss and a focus on improving family communication, cohesiveness, conflict resolution and shared adaptive grieving. Outcome data are not yet available.

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Turning to treatment for complicated grief, despite the small number of studies, the reviews cited above demonstrate that a range of approaches have been compared and evaluated, including brief psychodynamic psychotherapy, behaviour therapy, hypnotherapy and self-help groups. All the reviews report that treatment interventions have modest but positive effects. Neimeyer (2000) reporting on a meta-analysis (Fortner, 1999) found that counselling for unselected samples had little positive effect (Cohen’s d= 0.06) whereas therapy for traumatic grief had a reliable and positive effect (d =0.38). To date, there are no controlled outcome studies of cognitive therapy for grief, although Matthews and Marwit (2004) provide a rationale for employing cognitive therapy and an overview of relevant studies. They suggest it would be helpful to incorporate a social constructionist approach drawn from the need for meaning making. Details of how this might be approached are given by Neimeyer (2000, 2005). Jacobs and Prigerson (2000) comment on the finding that very different approaches have a positive impact. They suggest this may be due to nonspecific therapy elements such as the impact of the therapeutic relationship and the processes of reviewing the relationship with the deceased and the circumstances of death. They also raise the possibility that different approaches may be suitable for different types of people or presenting problems. The latter hypothesis may be supported by the findings of gender differences in response to therapies (Schut et al., 1997) and the individual differences highlighted in Neimeyer and Fortner’s meta-analysis (Neimeyer, 2000) in which they found that despite the overall positive impact, an estimated 17% experienced treatment-induced deterioration. A Canadian research group (Ogrodniczuk et al., 2002; Piper et al., 2001, 2002) has reported thorough, well-designed studies comparing factors that may predict benefit from interpretive or supportive group therapies. Their sample, drawn from referrals to mental health services on average nine years post-bereavement, is a true ‘treatment’ sample. Their results suggest that psychological mindedness, an ability to focus on the objectives of therapy, secure attachment to the deceased and better social role functioning may predict benefit from either approach, higher quality of object relations predicts benefit from interpretive therapy and lower quality predicts benefit from supportive therapy. Unfortunately they included very few older people so it is not clear whether these results would generalize to an older population, but they do give ideas for screening and for aspects to be addressed during therapy.

CONCLUSIONS There has been tremendous development in recent years in psychological research and informed thinking about death, dying and bereavement and many themes could be singled out for comment. One aspect of human nature that seems to be emphasized is the strength and resilience that older people show in the face of death or bereavement. The evidence seems to be that we tend to want to go on living with a sense of purpose and integrity drawn particularly from the human capacity to assimilate and derive meaning from our experiences. This may give those of us who work with older people a source of inspiration and the sense that there is more to be learned as we grow older. However, it is also the case that for some, distress will predominate in the face of these difficult issues. In these cases, new ways of thinking suggest ways of approaching psychosocial interventions. Research to date suggests the importance of broad assessment taking into account personal preferences

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in approach to dealing with loss, as well as family and cultural contexts. Sensitively enabling people to reflect on both past and future, facilitating the search for meaning, including that around continuing bonds and encouraging oscillation between loss- and restoration-focused coping may all be ways of addressing with people, individually or within the family, regrets, fears, griefs, hopes and pathways to resolution. Further good-quality evidence is needed on the process and impact of such interventions both with people who are facing death and those who are bereaved.

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Claiborne, M.C. (2003) Thanatologic realization and life integration: a study of the dying experience and how people prepare for death. Dissertation Abstracts International, 63, 4576. De Vries, B. (1997) Kinship bereavement in later life: understanding variations in cause, course and consequence. Omega: Journal of Death and Dying, 35, 141–157. De Vries B, Davis C., Wortman C., & Lehman, D. (1997) Long-term psychological and somatic consequences of later life parental bereavement. Omega: Journal of Death and Dying, 35, 97– 117. De Vries, B. & Lana, R.D. (1994) Parental bereavement over the life course: a theoretical intersection and empirical review. Omega: Journal of Death and Dying, 29, 47–69. Doka, K.J. (Ed. 2002) Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice. Research Press, Champaign, IL. Ellershaw, J. & Ward, C. (2003) Care of the dying patient: the last hours or days of life. British Medical Journal, 326, 30–4. Erikson, E. & Erikson, J.W. (1998) Life Cycle Completed: Extended Version. New York: Norton. Erlangen, A., Jeune, B., Bille, B.U. & Vaupel, J.W. (2004) Loss of partner and suicide risks among oldest old: a population based register study. Age and Ageing, 33, 378–83. Field, D. (2000) Older people’s attitudes towards death in England. Mortality, 5, 277–99. Field, D. & Friedrichs, M. (2004) Continuing bonds in coping with the death of a husband. Death Studies, 28, 597–620. Field, D., Gal, O.E. & Bonanno, G.A. (2003) Continuing bonds and adjustment at 5 years after the death of a spouse. Journal of Consulting and Clinical Psychology, 71, 110–17. Field, N.P., Nichols, C., Holen, A. & Horowitz, M.J. (1999) The relationship of attachment to adjustment in conjugal bereavement. Journal of Consulting and Clinical Psychology, 67, 212– 18. Fortner, B.V. (1999) The effectiveness of grief counseling and therapy: a quantitative review. Dissertation Abstracts International: Section B, 60, 4221. Fortner, B.V. & Neimeyer, R.A. (1999) Death anxiety in older adults: a quantitative review. Death Studies, 223, 387–411. Fry, P.S. (1997) Grandparents’ reaction to the death of a grandchild: an exploratory factor analysis. Omega: Journal of Death and Dying, 33, 119–140. Gamino, L.A., Sewell, K.W. & Easterling, L.W. (1998) Scott and White grief study: an empirical test of predictors of intensified mourning. Death Studies, 22, 333–55. Gamino, L.A., Sewell, K.W. & Easterling, L.W. (2000), Scott and White grief study – phase 2: toward an adaptive model of grief. Death Studies, 24, 633–60. Gesser, G., Wong, P.T. & Reker, G.T. (1997–98) Death attitudes across the lifespan: the development and validation of the Death Anxiety profile. Omega: Journal of Death and Dying, 18, 113–28. Gilliland, G. & Fleming, S. (1998) A comparison of spousal anticipatory grief and conventional grief. Death Studies, 22, 541–69. Hays, J.C., Galanos, A.N., Palmer, T.A. et al. (2001) Preference for place of death in a continuing care retirement community. Gerontologist, 41, 123–8. Hays, J.C., Gold, D.T. & Peiper, C.F. (1997) Sibling bereavement in late life. Omega: Journal of Death and Dying, 35, 25–42. Hines, S.C., Babrow, A.S., Badzek, L & Moss, A. (2001) From coping with life to coping with death: problematic integration for the seriously ill elderly. Health Communication, 13, 327–40. Hoelter, J.W. (1979) Multidimensional treatment of fear of death. Journal of Consulting and Clinical Psychology, 47, 996–999. Hogan, N.S., Worden, J.W. & Schmidt, L.A. (2003) An empirical study of the proposed complicated grief disorder criteria. Omega: Journal of Death and Dying, 48, 263–77. Jacobs, S., Mazure C. & Prigerson H. (2000) Diagnostic criteria for traumatic grief. Death Studies, 24, 185–99. Jacobs. S. & Prigerson, H. (2000) Psychotherapy of traumatic grief: a review of evidence for psychotherapeutic treatments. Death Studies, 24, 479–95. Jones, J., Huggins, M.A., Rydall, A.C. & Rodin, G.M. (2003) Symptomatic distress, hopelessness and the desire for hastened death in hospitalized cancer patients. Journal of Psychosomatic Research, Special Issue: Psychosocial Oncology, 55, 411–18. Jordan, J.R. & Neimeyer, R.A. (2003) Does grief counseling work? Death Studies, 27, 765–86.

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Kaltman, S. & Bonanno, G.A. (2003) Trauma and bereavement: examining the impact of sudden and violent deaths. Journal of Anxiety Disorders, 17, 131–47. Katz, J., Siddell, M. & Komaromy, C. (2000) Death in homes: bereavement needs of residents, relatives and staff. International Journal of Palliative Nursing, 6, 274–79. Kelly, B., Burnett, P., Pelusi, D. et al. (2003) Factors associated with the wish to hasten death: a study of patients with terminal illness. Psychological Medicine, 33, 75–81. Kirby, S.E., Coleman, P.G., & Daley, D. (2004). Spirituality and well-being in frail and nonfrail older adults. Journal of Gerontology: Psychological Sciences, 59B, 123–9. Kissane, D.W. & Bloch, S. (2002) Family Focused Grief Therapy. Maidenhead, Philadelphia: Open University Press. Klass, D., Silverman, P.R. & Nickman S.L. (eds) (1996) Continuing Bonds: New Understandings of Grief. Washington DC: Taylor & Francis. Koenig, H.G., McCullough, M.E. & Larson, D.B.(2001) Handbook of Religion and Health. Oxford University Press, Oxford. Laditka, J.N. & Laditka, S.B. (2003) Increased hospitalization risks for recently widowed older women and protective effects of social contacts. Journal of Women and Aging, 15, 7–28. Lester, D. & Abdel-Khalek, A. (2003) The Collett-Lester Fear of Death Scale: A Correction. Death Studies, 27, 81–85. Manor, O. & Eisenbach, Z. (2003) Mortality after spousal loss: are there socio-demographic differences? Social Science and Medicine, 56, 405–413. Martikainen, P. & Valkonen, T. (1996) Mortality after the death of a spouse: rates and causes of death in a large Finnish cohort. American Journal of Public Health, 86, 1087–1093. Matthews, L.T. & Marwit, S.J. (2004) Complicated grief and the trend toward cognitive-behavioral therapy. Death Studies, 28, 849–63. McCarthy, E.P., Phillips, R.S., Zhong, Z. et al. (2000) Dying with cancer: patients’ function, symptoms and care preferences as death approached. Journal of the American Geriatrics Society, 48, S110– 121. McCoy, S.K., Pyszczynski, T., Solomon, S. & Greenberg, J. (2000) Transcending the self: a terror management perspective on successful aging, in Death Attitudes and the Older Adult: Theories, Concepts and Application, (ed. A. Tomer). Brunner-Routledge, New York, pp. 37–64. Moss, M., Lesher, E.L. & Moss S.Z. (1986) Impact of the death of an adult child on elderly parents: Some observations. Omega: Journal of Death and Dying, 17, 209–18. Moss, M.S., Moss, S.Z. & Hansson, R.O. (2001) Bereavement and old age, in Handbook of Bereavement Research: Causes, Consequences and Care (eds M.S. Stroebe, R.O. Hansson., W.Stroebe & H. Schut), Washington DC: American Psychological Association, pp. 241–60. Neimeyer, R.A. (2000) Searching for the meaning of meaning: Grief therapy and the process of reconstruction. Death Studies, 24, 541–58. Neimeyer, R.A. (2005) Lessons of Loss: A Guide to Coping. Routledge, New York. Neimeyer, R.A. & Hogan, N.S. (2001) Quantitative or qualitative? Measurement issues in the study of grief, in Handbook of Bereavement Research: Causes, Consequences and Care (eds M.S. Stroebe, R.O. Hansson., W. Stroebe & H. Schut). Washington DC: American Psychological Association, pp. 89–118. Neimeyer, R.A., Wittowski, J. & Moser R.P (2004) Psychological research on death attitudes: an overview and evaluation. Death Studies, 28, 309–40. Niederlander E. (2006) Causes of Death in the EU. Population and Social Conditions: Statistics in Focus. Eurostate, Luxembourg. Ogrodniczuk, J.S., Piper, W.E., McCallum, M. et al. (2002) Interpersonal predictors of group therapy outcome for complicated grief. International Journal of Group Psychotherapy, 52, 511–35. Ott, C.H. (2003) The impact of complicated grief on mental and physical health at various points in the bereavement process. Death Studies, 27, 249–72. Parkes, C.M. (1981) Evaluation of a bereavement service. Journal of Preventive Psychiatry, 1, 179– 88. Parkes, C.M. (1993) Bereavement as a psychosocial transition: processes of adapting to change, in Handbook of Bereavement (eds M.S. Stroebe, W. Stroebe & R.O. Hansson). Cambridge University Press, New York.

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Piper, W.E., McCallum, M., Joyce, A.S. et al. (2001) Patient personality and time-limited group psychotherapy for complicated grief. International Journal of Group Psychotherapy, 51, 521–52. Piper, W.E., Ogrodniczuk, J.S., Azim, H.F. & Weideman, R. (2001) Prevalence of loss and complicated grief among psychiatric outpatients. Psychiatric Services, 52, 1069–74. Piper, W.E., Ogrodniczuk, J.S., Joyce, A.S. et al. (2002) Relationship among affect, work and outcome in group therapy for patients with complicated grief. American Journal of Psychotherapy, 56, 347– 61. Prigerson, H.G. & Jacobs, S.C. (2001) Traumatic grief as a distinct disorder: a rationale, consensus criteria and a preliminary empirical test, in Handbook of Bereavement Research: Causes, Consequences and Care (eds M.S. Stroebe, R.O. Hansson., W. Stroebe & H. Schut). American Psychological Association, Washington DC, pp. 613–46. Prigerson, H., Kasl, S. & Jacobs, S. (2001) Inventory of traumatic grief, in Handbook of Bereavement Research: Causes, Consequences and Care (eds M.S. Stroebe, R.O. Hansson., W. Stroebe & H. Schut). American Psychological Association, Washington DC, pp. 638–45. Prigerson H.G., Maciejewski, P.K., Newsom, J. et al. (1995) The Inventory of Complicated Grief: a scale to measure maladaptive symptoms of loss. Psychiatric Research, 59, 65–79. Prigerson, H.G., Shear, M.K., Jacobs, S.C. et al. (1999) Consensus criteria for traumatic grief: a preliminary test. British Journal of Psychiatry, 174, 67–73. Raphael, B., Minkov, C. & Dobson, M. (2001) Psychotherapeutic and pharmacological intervention for bereaved persons, in Handbook of Bereavement Research: Causes, Consequences and Care (eds M.S. Stroebe, R.O. Hansson., W. Stroebe & H. Schut). American Psychological Association, Washington DC, pp. 587–612. Reisman, A.S. (2001) Death of a spouse: illusory basic assumptions and continuation of bonds. Death Studies, 25, 445–60. Richardson, V.E. & Balaswamy, S. (2001) Coping with bereavement among elderly widows. Omega: Journal of Death and Dying, 43, 129–44. Rocke, C. & Cherry, K.E. (2002) Death at the end of the twentieth century: individual processes and developmental tasks in old age. International Journal of Aging and Human Development, 54, 315–33. Rubin, S. (1999) The two-track model of bereavement: overview, retrospect and prospect. Death Studies, 23, 681–714. Schut, H., Stroebe, M.S., Van den Bout, J. & De Keijser, J (1997) Intervention for the bereaved: gender differences in the efficacy of two counseling programmes. British Journal of Clinical Psychology, 36, 63–72. Schut, H., Stroebe, M.S., Van den Bout, J. & Terheggen, M. (2001) The efficacy of bereavement interventions: Determining who benefits, in Handbook of Bereavement Research: Causes, Consequences and Care (eds M.S. Stroebe, R.O. Hansson., W. Stroebe & H. Schut). American Psychological Association, Washington DC, pp. 705–38. Seale, C. (2000) Changing patterns of death and dying. Social Science and Medicine, 51, 917–30. Seymour, J., Gott, M., Bellamy, G. et al. (2004) Planning for the end of life: the views of older people about advance care statements. Social Science and Medicine, 59, 57–68. Shuchter, S.R. & Zisook, S. (1993) The course of normal grief, in Handbook of Bereavement: Theory, Research and Intervention (eds M.S. Stroebe, W. Stroebe & R.O. Hansson). Cambridge University Press, New York, pp. 23–43. Silverman, G.K., Jacobs, S.C., Kasl, S.V. et al. (2000) Quality of life associated with diagnostic criteria for traumatic grief. Psychological Medicine, 30, 857–62. Smith, K.R. & Zick, C.D. (1996) Risk of mortality following widowhood: age and sex differences by mode of death. Social Biology, 43, 59–71. Stroebe, M.S. (1992) Coping with bereavement: a review of the grief work hypothesis. Omega: Journal of Death and Dying, 26, 19–42. Stroebe, M.S., Hansson., R.O., Stroebe, W. & Schut, H. (eds) (2001) Handbook of Bereavement Research: Causes, Consequences and Care. American Psychological Association, Washington DC. Stroebe, M.S. & Schut, H (1999) The dual process model of coping with bereavement: rationale and description. Death Studies, 23, 197–224.

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Stroebe, M.S. & Schut, H. (2001) Risk factors in bereavement outcome: a methodological and empirical review, in Handbook of Bereavement Research: Causes, Consequences and Care (eds M.S. Stroebe, R.O. Hansson., W. Stroebe & H. Schut), Washington DC: American Psychological Association, pp. 349–72. Stroebe, M.S., Stroebe, W. & Hansson, R.O. (eds) (1993) Handbook of Bereavement: Theory, Research and Intervention. Cambridge University Press, New York. Stroebe, M.S., Van den Bout, J. & Schut, H. (1994) Myths and misconceptions about bereavement: the opening of a debate. Omega: Journal of Death and Dying, 29, 187–203. Tang, S.T. & McCorkle, R (2003) Determinants of congruence between the preferred and the actual place of death for terminally ill cancer patients. Journal of Palliative Care, 19, 230–7. Templer D.I. (1970) The construction and validation of a death anxiety scale. Journal of General Psychology, 82, 165–77. Thomas, T.C., Morris, S.M. & Clark, D. (2004) Place of death: preferences among cancer patients and their carers. Social Science and Medicine, 58, 2431–444. Thorsen, J.A. & Powell, F.C. (1990) Meanings of death and intrinsic religiosity. Journal of Clinical Psychology, 46, 379–91. Tomer, A. (2000) Meaning of life and meaning of death in successful aging, in Death Attitudes and the Older Adult: Theories, Concepts and Applications (ed. A.Tomer). Brunner-Routledge, New York, pp. 23–35. Tomita, K. & Kitamura, T. (2002) Clinical and research measures of grief: a reconsideration. Comprehensive Psychiatry,43, 95–102. Tong, E., McGraw, S.A., Dobihal, E. et al. (2003) What is good death? Minority and non-minority perspectives. Journal of Palliative Care, 19, 168–75. Vachon, M.L., Lyall, W.A., Rogers, J. et al. (1980) A controlled study of self-help interventions for widows. American Journal of Psychiatry,137, 1380–4. Van Baarsen, B. (2002) Theories on coping with loss: the impact of social support and self-esteem on adjustment to emotional loss and social loneliness following a partner’s death in later life. The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences,57, S33–42. Van Baarsen, B., Van Duijn, M.A.J., Smit, J.H. et al. (2002) Patterns of adjustment to partner loss in old age: The widowhood adaptation longitudinal study. Omega: Journal of Death and Dying, 44, 5–36. Vanderwerker, L.C. & Prigerson, H.G. (2004) Social support and social connectedness as protective factors in bereavement. Traumatic Loss, 9, 45–57. Vickio, C.J. (1999) Together in spirit: Keeping our relationships alive when loved ones die. Death Studies, 23, 161–75. Walter, T. (1996) A new model of grief: bereavement and biography. Mortality,1, 7–25. Werth, J., Gordon, J.R. & Johnson, R.R. (2002) Psychosocial issues near the end of life. Aging and Mental Health, 6, 402–12. WHO (1998) World Health Statistics, World Health Organisation, Geneva. WHO (2006) The World Health Report 2006: Working Together for Health. Thomson Prentice, Geneva. Wortman, C.B. & Silver, R.C. (1989) The myths of coping with loss. Journal of Consulting and Clinical Psychology, 57, 349–57. Wrobel, T.A. & Dye, A.L. (2003) Grieving pet death: normative, gender and attachment issues. Omega: Journal of Death and Dying, 47, 385–93.

PART TWO

Psychological Problems

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Manifestations of depression and anxiety in older adults Inger Hilde Nordhus University of Bergen, Bergen, Norway

INTRODUCTION Most countries in the industrialized parts of the world are characterized as ‘ageing’ societies because the proportion of adults aged 65 years and above has increased substantially relative to other age groups. The epidemiology of late-life psychiatric or psychological disorders is a comparatively new field and the frequently asked question of whether mental health declines or increases with age raises complex issues. This is, in part, because it is tied to the challenges associated with measuring psychological disorders in terms of whether we use valid and relevant measures, are able to understand age-specific characteristics of the symptom presentations given and are searching in relevant samples. This is not just a matter of conducting psychometrically or statistically sound studies; it is as much an issue of relevance in our meeting with the ageing individual as he or she enters our office. Have we sufficient knowledge and expertise to understand the person in front of us and are we prepared to conduct thorough assessment as a premise for suggesting management and eventual treatment options? In the sections that follow we will focus on depression and anxiety in old age and present them as distinct entities, but we cannot deny the fact that these mental health problems very often appear as two sides of the same coin. This, of course, has consequences for both the understanding of each syndrome or disorder as well as for the need to consider appropriate options for measurement. But first, we will briefly address the issue of assessing psychological functioning and malfunctioning in older adults.

ASSESSING PSYCHOPATHOLOGY IN LATE LIFE Evidence suggests that the majority of older people with psychological problems do not seek or receive adequate mental health services (Nordhus, Nielsen & Kvale, 1998). For many years clinical psychology with older people has thoroughly described the many barriers to psychological assessment and treatment facing many older people: the conventional Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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belief that some conditions like depression and anxiety are expected concomitants of old age, the attribution of psychological symptoms to physical rather than psychological causes, emphasis on medical treatment, and stigmatization and shame associated with mental health care (Segal, Coolidge & Hersen, 1998). At the same time, and contrary to common belief, older adults experience slightly lower rates of some psychological disorders, like depression, than younger adults (Gatz, Kasl-Godley & Karel, 1997). Psychological dysfunction is not a natural consequence of growing older. Still, the assessment of psychological problems in late life is complex in terms of the fact that older adults have longer histories of interaction with the environment, a greater probability of having experienced various diseases followed by prescribed medications, a greater number of personal losses as well as an increased likelihood of comorbid physical and mental disorders. All of these factors should be taken into account when assessing older patients presenting with emotional problems and symptoms.

Categorization and Measurement Issues Age-related characteristics, however, have only partly been incorporated into standard diagnostic criteria. The Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV) (American Psychiatric Association, 1994) and the International Classification of Disease, tenth edition (ICD-10) (World Health Organization, 1994) both provide standard guidelines to assist reliable diagnosis in clinical practice as well as in research. The DSM-IV, for instance, refers to five different domains of information about various mental disorders and medical conditions, psychosocial and environmental problems and level of functioning. For diagnosis of psychological disorders in older adults, the DSM-IV has strengths as well as weaknesses (Zarit & Haynie, 2000). A major strength is improved criteria for those categories that mainly include older patients – dementia and delirium. The main weakness from the perspective of clinicians as well as researchers is that the DSM-IV does not adequately address the issue of criteria for diagnosis of older people suffering from psychological disorders like anxiety or affective disorders. We do not have sufficient knowledge about whether and to what extent common disorders like anxiety and depression look different in later life than in younger age groups. Although the DSM IV has separate sections for childhood and adult disorders, there is no specific section or criteria for mental disorders in later life, although the course over the lifespan for some disorders is described. Generally, though, limited information on age-related manifestations of disorders is provided in the DSM-IV. In the remainder of the chapter, we will primarily use DSM-IV as reference criteria for clinical diagnosis. Within the clinical psychology of older people, the question of age-appropriate diagnoses has been of substantial interest for a long time and still remains open to debate (Nordhus & Pallesen, 2003). Accurate diagnostic criteria for older people will potentially lead to better diagnosis and eventually better treatment. Thus the question of whether common disorders such as anxiety and depression appear or manifest themselves differently in later life than earlier in life is of great importance and will be illustrated in the sections that follow. In general, the purpose of clinical assessment and testing is to find out what types of problems the person is experiencing and what may have caused the problem, to identify and diagnose mental disorders and to develop initial case conceptualization, formulation

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and intervention plans. Although specific technical information about how to carry out psychological testing is beyond the scope of this chapter, the primary psychometric issues regarding psychological testing of older adults will be briefly addressed (see also Chapter 22, this volume). These issues concern the related topics of reliability, validity and norms. Tests that are used with older adults should show ample evidence of reliability in terms of test-retest reliability and internal consistency, and validity. Reliability and validity are closely interrelated. An unreliable test cannot possibly be valid, although it is possible for a test to have good reliability but poor validity if the test does not measure anything meaningful. There are various types of validity and of special concern here is the content validity of instruments primarily designed for younger adults. The experience and presentation of depression or anxiety in older adults may differ from that of younger adults, so it does not follow that instruments developed for younger age groups are valid for older people. Clinical assessment through psychological tests or rating scales should be based on measures that have been validated in an older sample or groups that are similar to the sample or group from which the client comes. Standardization on and norms for older people are also necessary. Without standardization and norms it is difficult to determine if an older adult’s score or response is typical, above average or below average compared with the section of the population he or she comes from. Measures developed specifically for older people typically have excellent norms. Other measures that were designed for young and middle-aged persons very often lack initial norms for older adults but these may since have been provided. Consideration should also be given to the fact that norms for an age group may change over time, as age groups are composed of different people with different life experiences. Clinicians as well as researchers should carefully review the manual for the tests they use, and, if necessary, seek out expertise to determine if evidence for reliability, validity and relevant norms for older people are available. Otherwise, one should be cautious in interpreting responses or scores and work to develop psychometric information for the actual measure used or search for equivalent measures with sufficient psychometric information.

Medical Conditions and Medication Issues Once older adults present for psychological evaluation there are other problems that may affect assessment, among which physical changes and medication use are essential to consider. These issues can make psychological assessment more challenging and may also affect test performance. Physical illnesses can mask psychological problems and psychological problems can mask physical illness. The fact that physical illness and mental health problems often occur together should never be overlooked when older people present for psychological assessment. The nature and complexity of mental and physical problems among older adults demands a multidimensional assessment, ideally involving an interdisciplinary team of professionals. At minimum, there should be a close contact between the professional assessing the older person’s mental health status and the person’s general practitioner (primary care physician). Vision problems as well as a decline in hearing affect many older adults and may illustrate the interrelatedness between psychological and physical health problems. Over time, visual capacity typically declines over age and severe vision problems are known to have negative

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psychological consequences because they are related to decreased self-esteem, mobility and autonomy and eventually relate to depression (Hersen, Van Hasselt & Segal, 1995). After age 50, almost all adults lose some auditory acuity and nearly 50% of normal older people have a significant impairment (Whitbourne, 2000). Like vision, hearing impairment can have adverse psychological effects such as impaired social functioning, isolation, and depression. With increasing age, endurance and stamina typically decline due to changes in heart functioning, circulation, lungs, and muscle tissue. Moreover, rate of information processing and reaction time generally slow with age. Older people in general are able to compensate for these changes and function effectively in their daily work and life (see Chapter 3, this volume). When and if the older adult is psychologically vulnerable, however, these changes may often make a difference and may be perceived by the individual as an expression of health decline, thus arousing psychological distress. Regardless of the source of these more-or-less minor deficits, they can lead to declines in adaptive and social functioning as well as quality of life and psychological functioning. Differentiating normal age-related changes from what these changes may lead to in terms of psychological symptoms is of great importance when assessing older adults. Due to age-related increases in the frequency of chronic medical conditions, older adults consume a disproportionate amount of prescribed and over-the-counter medications. The most frequently prescribed medications for older people include sedatives, minor tranquilizers, and cardiovascular agents, whereas widely used over-the-counter medications include analgesics, antacids, and laxatives. It is well known, that with increased drug use, older people are at increased risk for adverse drug effects. This risk is caused by potential harmful drug interactions as a consequence of multipharmacy and because older people metabolize drugs at a slower rate compared with younger age groups. Clinicians, therefore, should obtain as detailed information as possible about current medical conditions and medications during the initial assessment of the older patient to assist the clinician in understanding the patient’s current problems. Information about medical illnesses is important because some conditions (for example, thyroid dysfunction, hypoglycaemia, and brain tumour) can mimic signs of psychiatric conditions (Alexopoulos, 2005). Likewise, some antihypertensives (prescribed for high blood pressure) can induce depressive symptoms; and some bronchodilators (prescribed to improve lung and air flow function) can cause anxiety symptoms (Whitbourne, 2000).

DEPRESSION Clinical Features The term depression is used broadly to describe a syndrome that includes a constellation of physiological, affective, and cognitive manifestations. Depression is subsumed within a larger group of disorders, that is, mood disorders. Criteria for diagnosis include depressed or irritable mood; loss of interest or pleasure in usual activities; changes in appetite and weight; disturbed sleep; motor agitation or retardation; fatigue and loss of energy; feelings of worthlessness, self-reproach, or excessive guilt; suicidal thinking and attempts and difficulty with thinking and concentration. According to DSM-IV, mood disorders can be divided into four general clusters: depressive disorders (major depression, dysthymic disorder, and depressive disorder not otherwise specified); bipolar disorders (bipolar I, bipolar II,

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cyclothymic disorder, and bipolar disorder not otherwise specified); mood disorders due to a medical condition; and substance-induced mood disorders. Our main focus in this chapter will be on depressive disorders. Late-life depression refers to depressive syndromes that arise in adults 65 years and older. Depression in older people is a major public health problem and it often goes unrecognized. It causes strain to those experiencing depressive symptoms and disorders and it adds to the strain of families as well as health care personnel providing care for these patients. What makes depression in older people so insidious is that neither the person concerned nor the healthcare provider may necessarily recognize its symptoms in the context of medical and physical problems as well as an accompanying and often polypharmaceutical use of medication. For a diagnosis of major depression to be made, DSM-IV and ICD-10 state that either depressed mood or loss of interest or pleasure must be present. Minor depression, with fewer symptoms than major depression, is often associated with functional disability in older adults, and about 25% of these patients develop major depression within two years. According to current epidemiological data (Alexopoulos, 2005; Blazer, 2003) 1% to 4% of the general population of older people has major depression, with twice as many women as men being affected. Both the prevalence and incidence double for people aged 70– 85 years. Minor depression has a prevalence of 4% to 13% in older people; dysthymic disorder, characterized by low-intensity symptoms of depression occurs in about 2% of older individuals. The prevalence of late-life depressive symptoms is higher in medical and institutional settings than for older people living in the community. An accumulating body of research identifies differences in symptom presentation in late life (Blazer, 1994). This includes lower prevalence of dysphoria or depressive thoughts, fewer ideational symptoms (such as guilt or suicidal ideation) but more prominent and specific somatic symptoms (constipation, weight loss, aches), feelings of anxiety and cognitive dysfunction. As such, depressed mood, or the feeling or experience of being depressed, may be less prevalent or prominent than somatically related symptoms such as loss of appetite, problems maintaining sleep or experiencing restorative sleep, as well as anergia, implying loss of interests and enjoyment of the normal pursuits of life. One must be mindful that the diagnostic criteria set forth in current diagnostic systems may not adequately capture the various ways in which depressive disorders are expressed by older adults. Some authors have suggested that the symptom profile commonly seen in older adults represents a distinct subtype of depression. In previous literature, variants of this symptom profile have been referred to as masked depression or somatic depression. More currently, depletion syndrome and nondysphoric depression have been favoured and seem to capture the phenomenon more accurately. Dysthymic disorder is a syndrome of depression of mild or moderate severity and characterized by a chronic disturbance of mood occurring more days than not for at least two years with the associated symptoms listed above. Older persons with a dysthymic disorder may demonstrate increased social isolation, which in turn will make them vulnerable in terms of feelings of loneliness and social alienation. Although dysthymic disorder and major depressive disorder share many similar symptoms, they are different in intensity and duration of symptoms. The distinction between depression and dysthymic disorder is not always given and may, in fact, co-occur in the same older patient (Alexopoulos, 2005). Subdysthymic or subsyndromal depression are terms sometimes used to refer to elevated depressive symptomatology that does not meet criteria for either major depression or dysthymic disorder.

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In very late life, a long subsyndromal phase of up to three years can precede major depression (Alexopoulos, 2005). Depression is sometimes a phase of bipolar disorder. Bipolar disorder I (most recent episode depressed) is diagnosed in people with major depression who have a history of at least one manic or mixed episode. Bipolar disorder II is diagnosed in those who have bouts of major depression and a history of hypomanic episodes (hyperactivity). Older people suffering from bipolar disorder have severe and disabling episodes and are high users of mental health and other medical services (Bartels, Forrester & Miles, 2000). The DSM-IV diagnostic criteria for bipolar disorders include a disturbance in mood characterized by one or more episodes of irritable mood and the presence of inflated self-esteem, decreased need for sleep, psychomotor agitation and various forms of hyperactivity (such as excessive involvement in goal-directed or pleasurable activities). There is absence of information about bipolar disorders in the older population compared to the younger age groups. It has been observed, however, that older individuals may demonstrate increased agitation, irritability, hostility, and paranoia (Blazer, 1999). Cognitive dysfunction such as memory problems and delirium (confusion) during manic episodes is also common in older patients. Generally, when compared with older individuals with early onset major depression (i.e. episodes of depression beginning before age 65), individuals with late-onset major depression have a less frequent family history of mood disorders and a larger cognitive impairment, including diagnosed dementia (Alexopoulos, Young & Meyers, 1993). Clearly, depression in late life may be more difficult to detect due to heterogeneity in presentation as well as medical illnesses. Older adults demonstrate a tendency to underreport the presence as well as the severity of depressive symptoms. Some studies suggest a curvilinear relationship between age and depression across the lifespan. Early adulthood and late adulthood (over the age of 75) appear to be the ages in which depression is most prevalent (Gatz et al., 1997). Older adults who have experienced a previous depressive episode are more likely to experience a recurrence of their illness (Reynolds et al., 1999).

Suicide A common referral question for psychological assessment of an individual presenting with symptoms of depression of any kind is related to evaluating the person’s potential for selfharm. General queries about suicidal ideation should be followed up with probes about specific plans and intent. Suicidal risk is part of any standard testing battery and the reason for this is twofold. To protect the patient who may want to escape from emotional turmoil and suffering as a consequence of depression and to protect the clinician who can be held legally liable if a thorough suicidal assessment was not performed or he or she failed to take proper steps to prevent the eventual attempt or committed suicide. Suicide is a significant clinical problem for younger and older patients alike. However, suicide rates generally increase with age, with the highest rates among persons over age 65 (Minino et al., 2002; see also Chapter 7, this volume). Suicidal ideation decreases with ageing, but if older people have suicidal thoughts, they are at higher risk of committing suicide compared to younger individuals. There is variability, however, across countries and between male and female populations. In addition to age, other risk factors to be

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considered include depression, male gender and widowhood, substance abuse and physical illness. Among those who attempt to commit suicide, older people are most likely to die or to succeed. In about 80% of individuals 74 years and above who commit suicide, depressive symptoms were present (Conwell, Duberstein & Caine, 2002). Mood disorders constitute an independent risk factor for suicide in older people, whereas physical illness and disability increase suicide risk, but their effect is mediated by depression. Likewise, disruption of social ties is associated with late-life suicide independently of depression. This is especially so in individuals with various symptoms of anxiousness. All together, this illustrates the need to look at the older individual in a perspective of multi-factorial influence on the presence of psychological problems.

Clinical Assessment Common clinical assessment questions when depressive symptoms are presented, include distinguishing between depression and bereavement, accounting for comorbid symptoms of depression with anxiety and discriminating between normal cognitive changes as opposed to cognitive deficits due to the presence of a mood disorder or dementia. The loss of an emotionally meaningful relationship will eventually lead to grief and a normal time-limited emotional arousal. Although reactions to personal loss are far from universal, empirical evidence enables distinctions between normal and abnormal grief reactions (Stroebe, Van den Bout & Schut, 1994). Grief will have much in common with depression. However, the presence of worthlessness and prolonged functional impairment due to depressive symptoms are suggestive of a mood disorder rather than bereavement alone. The problem may have started as a normal bereavement after personal loss and then turn into an adjustment disorder with depressed mood. It is also initially difficult to distinguish deficits in cognitive and behavioural functioning that are due to a mood disorder from those caused by dementia. This is further complicated by the fact that an individual may suffer from dementia as well as depression. However, depressed older people who present with cognitive dysfunction (such as impaired memory and concentration) often have dementia-like symptoms without actually having a dementia. These cognitive symptoms may reverse, although there is a growing body of literature suggesting that alterations in cognitive functioning during depression do not always improve and may even increase the risk for future dementia (King & Caine, 1996). Although depressive symptoms are common in people with dementia, people with depression without dementia present with more severe depressive symptoms and less severe cognitive deficits (Blazer, 1999). From clinical practice it is frequently found that depressed older people are more likely to complain of memory problems than those actually suffering from dementia. Likewise, older people with dementia are more likely to overestimate their memory and try hard to compensate for their actual decline. These questions are often addressed during the initial clinical interview in addition to using various tests or self-report inventories. The clinical interview is the most commonly used clinical assessment instrument, offering the clinician an opportunity to observe the older person (for example, noting agitated behaviour) and to start building an adequate relationship with the person. It permits

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rephrasing of questions that appear unclear to the person and the exploration of areas relevant to the presenting problems. The interview also provides an opportunity to identify a significant other who can supplement information on the person’s current level of functioning. Self-report inventories and questionnaires are also used commonly with older adults and remain an important source of information (see also Chapter 24, this volume). Some of the disadvantages of self-report inventories are the requirements of good vision and adequate reading comprehension. Deficits in any of these functions can influence the reliability and validity of information obtained via questionnaires and inventories. These problems are often reduced by rating scales developed on the premise that they are administered and rated by the clinician (or a test technician). Several self-report depression inventories are available for clinical use. The Beck Depression Inventory I and revised versions (BDI) (Beck et al., 1961) are widely used in clinical research and practice as a depression screening device. The BDI is a 21-item self-report questionnaire and each item describes a specific manifestation of depression for which the respondent indicates his or her current level of depression along a four-point response scale. The 21 items assess cognitive, affective, somatic and performance symptoms of depression over the past week. The main criticism of the BDI is that it contains many somatic items, which may not be reflective of depression in older physically ill adults and thus may show falsely elevated levels of depression. Another frequently used questionnaire for the assessment of depression is the Center for Epidemiologic Studies Depression Scale (CES-D) (Radloff, 1977). This 20-item self-report questionnaire includes fewer items on somatic aspects of depression. In various studies, the CES-D has demonstrated good test-retest reliability as well as strong evidence for validity when compared with clinical diagnosis in large samples of community-residing older adults (see Lewinsohn, Seely, Roberts & Allen, 1997). By far, the most popular self-report inventory for depression in older people is the Geriatric Depression Scale (GDS) (Yesavage et al., 1983). The GDS consists of up to 30 items (depending on whether a short-form is used) focusing on cognitive and behavioural aspects of depression, and somatic items are excluded. The GDS has been exposed to various analyses of reliability and validity, and has been compared to various measures of depression. It has generally shown satisfactory psychometric properties (Kogan et al., 1994). Despite the popularity of these self-report measures, a definite diagnosis of depression or other psychological disorders should not be made on the basis of self-report alone. Selfreport scales are basically used as screening instruments followed by a clinical interview based on definite diagnostic criteria. The Structured Clinical Interview for DSM (SCID) (First et al., 1997) is rapidly becoming the gold standard for interview-based assessment of mental disorders in general and provides information on the presence of diagnosable mental disorders, including depression and anxiety.

ANXIETY Clinical Features Anxiety is one of the most prevalent disorders among older adults, yet it is one of the least researched, compared to the attention given to late-life depression and dementia (Nordhus & Pallesen, 2003). Within clinical practice there may be a tendency to discount anxiety

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disorders relative to other more salient issues associated with ageing. The current clinical reality, then, is that cases of anxiety symptoms and disorders in late life often go undetected. Anxiety manifests itself in various physical and emotional ways across the lifespan, and is often referred to as composed of cognitive (worry, concentration difficulties), somatic (fatigability, muscle tension, sleep disturbance) and emotional (restlessness, irritability) components. According to the DSM-IV criteria, anxiety disorders most often seen in older adults are generalized anxiety disorder (GAD), panic disorder (PD), social phobia (SP); posttraumatic stress disorder (PTSD), acute stress disorder (ASD) and anxiety disorder due to a general medical condition (ADGMC). Obsessive-compulsive disorder (OCD) is relatively less common in older adults as compared to younger age groups. In a review including eight random-sample community samples, Flint (1994) found prevalence rates of diagnosed anxiety ranging from 0.7% to 18% among adults (60 years and over). Across these studies, prevalence rates ranged as follows: phobic disorder (mainly social phobia – SP), 0% to 10%; generalized anxiety disorder (GAD), 0.7% to 7.1%; obsessive-compulsive disorder (OCD), 0.0% to 1.5%; panic disorder (PD), 0.1% to 1.0%. Post-traumatic stress disorder and anxiety due to a medical condition were not included in this study. Generalized anxiety disorder is considered one of the most prevalent of the anxiety disorders experienced by older adults and is defined (DSM-IV) as excessive anxiety and worry about a number of activities or events of at least six months duration. The worry must be difficult to control and associated with at least three of six symptoms: restlessness, fatigability, concentration difficulties, irritability, muscle tension, and sleep disturbances. In addition, clinically significant distress or impairment related to anxiety and worry must be reported. Although most older adults with generalized anxiety disorder report an onset in childhood or adolescence, as many as 30 to 40% report an onset later in life, suggesting that late-onset anxiety is not a rare phenomenon (Le Roux, Gatz & Wetherell, 2005). The same holds true for panic disorder and post-traumatic stress disorder occurring for the first time in later life (Sheikh et al., 2004; Van Zelst et al., 2003). Panic disorder can occur in several forms. The basic diagnostic criterion for PD is recurrent, unexpected panic attacks. Panic attacks comprise a discrete period of intense fear or discomfort in which four of a number of physical symptoms occur (for example, shortness of breath, dizziness) and or fear of dying. Closely related is agoraphobia, which is another common anxiety condition also present in old age. Panic disorder can occur with or without agoraphobia, which is the fear of being unable to escape a situation should a panic attack occur. Clinical experience suggests that whereas GAD tends to begin early in life, agoraphobia can develop at any time in life. Older adults may experience PD with agoraphobia in which outside activities such as shopping or socializing may be avoided due to fears of embarrassing panic attacks. Social phobia (SP) develops from an extreme, persistent fear of situations where the individual may be exposed to unknown people. In older adults SP may develop in relation to a medical condition that makes the person feel uncomfortable in social situations and therefore avoid getting involved in social situations. Post-traumatic stress disorder (PTSD) is found to be common in older adults (for example, Rosenzweig et al., 1997; see also Chapter 8, this volume). It is an anxiety disorder characterized by a traumatic event that is experienced or relived even long after its original occurrence. This, in turn, leads to avoidance of certain stimuli and to changes in normal responsiveness (such as restricted range of affect) and lack of future perspective. These

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symptoms often are followed by insomnia (sleep difficulties) and hyper-vigilance (such as being easily startled). It is common among veterans of wars and other traumatic events. Acute stress disorder (ASD) is a new addition to the diagnostic nomenclature and is similar to PTSD except that the symptoms are experienced immediately after a traumatic event. Since ASD is relatively newly introduced in the diagnostic system (DSM) little research has been done involving the occurrence or symptomatology in older people. It has been suggested, however, that some older individuals, having extreme difficulty in dealing with the death of a loved one, particularly sudden death, experienced symptoms of traumatic stress implicating ASD (Rosenzweig et al., 1997). This also illustrates that the bereavement process may activate anxiety just as much as the depressive reactions indicated above. Additionally, anxiety and depression may occur as comorbid reactions, a topic we will return to below. According to DSM-IV, anxiety disorder due to a general medical condition (ADGMC), often manifested as panic attacks, is commonly caused by cardiovascular and or respiratory conditions and neurological disorders (Alexopoulos, 2005). The link between medical illness and anxiety is clearly indicated in conditions such as chronic obstructive pulmonary disease (COPD) which appears from middle age on with a peak from 60+. In a metaanalysis, we found that up to 30% of patients suffering from COPD had a comorbid anxiety condition and this was often in combination with elevated depressive symptoms (Hynninen et al., 2005). In cases of early dementia, close to 40% were found to experience anxiety either as a subthreshold syndrome or in accordance with a full-blown anxiety diagnosis (Wands et al., 1990). As is the case with depression, clinicians often state that the clinical picture of anxiety differs substantially between older and younger adults. Studies suggest that whilst GAD in older people, as defined by DSM-IV criteria, is similar to what is observed in younger adults, older adults tend to worry more about their health whereas younger age groups are more likely to worry about their finances (Person & Borkovec, 1995). The challenge for clinicians is to make a subjective decision about what constitutes realistic worry versus clinically significant worry in the individual case. Although most cases of GAD seem to begin early in life, some older adults report no such story prior to their current anxiety problems. Those older adults with GAD reporting early onset of anxiety tend to have more severe anxiety and are more likely to have depressive symptoms additionally. Generally, we need to be alert to the tendency to attribute excessive worry to the natural process of ageing. Late-onset panic disorder is characterized by fewer panic symptoms, less arousal, avoidance, social phobia and depression (Sheikh et al., 2004). Likewise, older adults with posttraumatic stress disorder appear to experience less avoidance, intrusive thought, and guilt, but more alienation from other people.

Clinical Assessment Several factors that are associated with the ageing process may contribute directly to the presentation, and thus the assessment, of anxiety in later life. The coexistence of anxiety and other psychological problems in later life is common, including depression as already indicated. Symptoms of anxiety in older adults are also associated with neurocognitive

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changes. The development of anxiety in older adults diagnosed with dementia is often the result of the challenges associated with memory impairment and confusion (Fisher & Noll, 1966). In most cases, clinicians rely on subjective reports from the person to help determine if anxiety is present. Unfortunately, older adults with dementia sometimes have great difficulty in accurately reporting their subjective experiences. As a result, clarification between anxiety and agitation in people with dementia remains difficult, making the assessment process even more complicated with this group of older people. The association between physical and mental health problems like anxiety can occur in several ways. An older adult who has an excessive fear of falling may restrict his or her mobility to avoid a fall, resulting in increased risk for physical disease associated with being sedentary (such as heart disease). This in turn may add to the already present psychological symptoms of fear and anxiety. Older adults may be loath to report anxiety symptoms. They may minimize the impairment caused by anxiety or view it as a stable part of their personality (which also may be the case). There is no doubt an underreporting, in addition to the fact that many health providers are not accustomed to recognizing anxiety in older individuals. In light of the complex nature of anxiety in later life, a thorough approach to assessment is needed. Unlike the GDS for depression, there is no parallel specific measure of anxiety in older people. As is the case with depression, the assessment of anxiety in older adults may be challenging because many anxiety symptoms are physical (for example, heart pounding). As such, underlying medical conditions and medications, rather than psychological factors, could account for some symptoms. Two of the most commonly used self-report measures of anxiety are the Beck Anxiety Inventory (BAI) (Beck & Steer, 1993) and the State-Trait Anxiety Inventory (STAI) (Spielberger, 1983). The STAI is a measure in a scale format (1–4 point scale) composed of two separate 20-item scales. The first scale measures state anxiety, or how a respondent feels right now, while the second scale measures trait anxiety, or how a respondent generally feels. The BAI is a 21-item scale (1–4 point scale) which measures severity of anxiety and discriminates anxiety from depression. Thirteen items assess physiological symptoms, five describe cognitive aspects, and three represent both cognitive and somatic symptoms. Psychometric properties and clinical utility of these two measures have been examined. Across several independent investigations, the State and Trait scales have been found to possess acceptable psychometric properties in use with older people. Test-retest estimates have been favourable, while various validity measures have been less impressive (Stanley, Beck & Zebb, 1996). Other instruments appearing in the clinical literature on ageing include the Worry Scale (WC) (Wisocki, Handen & Morse, 1986) with a special focus on older adults and the Penn State Worry Questionnaire (PSWQ) (Meyer et al., 1990). These are measures based on specific theoretically and empirically founded concepts of anxiety and are very useful in the clinical assessment of anxiety in general as well as in late-life anxiety. Adequate age norms as well as estimates of reliability and validity are established in various samples for the PSWQ, making it suitable for older adults as well (Beck, Stanley & Zebb, 1995; Pallesen et al., 2006). As anxiety disorders in older people are rather common, it is remarkable that relatively few patients are diagnosed with these disorders in clinical practice. This low rate of detection may stem from the fact that most older adults with anxiety are seen in primary care rather

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than in specialist mental health settings. Empirical research has begun to provide a firmer foundation on which to diagnose and treat anxiety in older adults but this knowledge has yet to be sufficiently implemented in clinical practice.

ANXIETY AND DEPRESSION – CLINICAL CHALLENGES Anxiety and depression have repeatedly been shown to be conditions that tend to co-occur. This pattern is true for all age cohorts. In fact, some believe these conditions are facets of a higher order construct, which has been termed negative affect. Anxiety may be a significant indicator of depression in older adults. Generally, those with onset of depression early in life show higher rates of anxiety than those with late-onset depression. The converse is also true: those with early onset of anxiety disorders are more likely to experience comorbid depression. No matter how negative affect translates into diagnostic categories, the potential for various types of losses in late life makes older people susceptible to developing pathological reactions to personally demanding challenges. The assessment of psychopathology in late life is complex – the symptoms can be multiply determined and even generated by treatments used to address other disorders. As we have illustrated, subsyndromal or subthreshold forms of anxiety or depression can be quite debilitating and vexing. The clinician may need to reconsider the exclusive use of current diagnostic criteria when assessing older adults, as well as having a critical view on current assessment measures when applied in older samples or groups. An important area of future investigation is how the course of depression and anxiety may change in late life for those who have been afflicted for many years, or for those who experience these problems for the first time in life. No matter what category the older person belongs to, there is always a personal story surrounding the person, a story that may give you the background you need to understand why anxiety or depression developed and made a difference in that person’s life. Symptoms should always be perceived in the context of a personal story that reflects resources as well as vulnerability in the older individual.

REFERENCES Alexopoulos, G.S. (2005) Depression in the elderly. The Lancet, 365, 1961–70. Alexopoulos, G.S., Young, R.C., Meyers, B.S. (1993) Geriatric depression: age of onset and dementia. Biological Psychiatry, 34, 141–5. American Psychiatric Association. (1994) Diagnostic and Statistical Manual of Mental Disorders, 4 edn. APA, Washington DC. Bartels, S.J., Forrester, B., Miles, K.M., et al. (2000) Mental health service use by elderly patients with bipolar disorder and unipolar major depression. American Journal of Geriatric Psychiatry, 8, 160–6. Beck, J.G., Stanley, M.A. & Zebb, B.J. (1995) Psychometric properties of the Penn State Worry Questionnaire in older adults. Journal of Clinical Geropsychology, 1, 33–42. Beck, A.T. & Steer, R.A. (1993) Beck Anxiety Inventory Manual, 2nd edn, Psychological Corporation, San Antonio TX. Beck, A.T., Ward, C.H., Mendelson, M. et al. (1961) An inventory for measuring depression. Archives of General Psychiatry, 4, 561–71.

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Blazer, D.G. (1994) Epidemiology of late-life depression, in Diagnosis and Treatment of Depression in Late Life: Results of the NIH Consensus Development Conference (eds L. Schneider, C. Reynolds, III, B. Lebowitz & A. Friedhoff), American Psychiatric Press, Washington DC, pp. 9–19. Blazer, D.G. (1999) Depression, in Principles of geriatric medicine and gerontology, 4th edn (eds W.R. Hazzard, J.P. Blass, W.H. Ettinger, Jr. et al.). McGraw-Hill: New York, pp. 1331–9. Blazer, D.G. (2003) Depression in later life: review and commentary. Journal of Gerontological Medical Science, 56A, 249–65. Conwell, Y., Duberstein, P.R. & Caine, E.D. (2002) Risk factors for suicide in later life. Biological Psychiatry, 52, 193–204. First, M.B., Spitzer, R.L., Gibbon, M. & Williams, J.B.W. (1997) The Structured Clinical Interview for Axis I DSM-IVDisorders – Patient Edition (SCID-I/P version 2.0.) New York State Psychiatric Institute: Biometrics Research Department. Fisher, J.E. & Noll, J.P. (1996) Anxiety disorders, in Practical Handbook of Clinical Gerontology (eds L.L. Carstensen, B.A. Edelstein & L.L. Dombrand). Sage, Thousand Oaks CA, pp. 304–23. Flint, A.J. (1994) Epidemiology and co-morbidity of anxiety disorders in the elderly. American Journal of Psychiatry, 151, 640–9. Gatz, M., Kasl-Godley, J.E. & Karel, M.J. (1997) Aging and mental disorders, in Handbook of the Psychology of Aging, 4th edn (eds J.E. Birren & K.W. Schaie). Academic Press, San Diego CA, pp. 365–82. Hersen, M., Van Hasselt, V.B. & Segal, D.L. (1995) Social adaptation in older visually impaired adults: some comments. International Journal of Rehabilitation and Health, 1, 49–60. Hynninen, K.M.J., Breitve, M.H., Wiborg, A.B. et al. (2005) Psychological characteristics of patients with chronic obstructive pulmonary disease: a review. Journal of Psychosomatic Research, 59, 429–43. King, D.A. & Caine, E.D. (1996) Cognitive impairment and major depression: beyond the pseudodemential syndrome, in Neuropsychological Assessment of Neuropsychiatric Disorders (eds I. Grant & K.M. Adams), Oxford University Press, New York, pp. 200–17. Kogan, E.S., Kabacoff, R.I., Hersen, M. & Van Hasselt, V.B. (1994) Clinical cutoffs for the Beck Depression Inventory and Geriatric Depression Rating Scale with older adult psychiatric outpatients. Journal of Psychopathology and Behavioral Assessment, 17, 97–109. Le Roux, H., Gatz, M. & Wetherell, J.L. (2005) Age at onset of generalized anxiety disorder in older adults. American Journal of Geriatric Psychiatry, 13, 23–30. Lewinsohn, P.M., Seeley, J.R., Roberts, R.E. & Allen, N.B. (1997) Center for Epidemiologic Studies Depression Scale (CES-D) as a screening instrument for depression among community-residing older adults. Psychology and Aging, 12, 277–87. Meyer, T.J., Miller, M.L., Metzger, R.L. & Borkovec, T.D. (1990) Development and validation of the Penn State Worry Questionnaire. Behavior Research and Therapy, 28, 487–95. Minino, A.M., Arias, E., Kochanek, K.D. et al. (2002) Deaths: final data for 2000. National Vital Statistical Report, 50, 1–119. Nordhus, I.H., Nielsen, G.H. & Kvale, G. (1998) Psychotherapy with older adults, in Clinical Geropsychology (eds I.H. Nordhus, G.R. Van den Bos, S. Berg & P. Fromholt). American Psychological Association, Washington DC, pp. 289–312. Nordhus, I.H. & Pallesen, S. (2003) Psychological treatment of late-life anxiety: an empirical review. Journal of Consulting and Clinical Psychology, 71, 643–651. Pallesen, S. Nordhus, I.H., Carlstedt, B. et al. (2006) A Norwegian adaptation of the Penn State Worry Questionnaire: factor structure, reliability, validity and norms. Scandinavian Journal of Psychology, 47, 281–91. Person, D.C. & Borcovec, T.D. (1995) Anxiety Among the Elderly: Patterns and Issues. Paper presented at the 103rd annual convention of the American Psychological Association. Radloff, L.S. (1977) The CES-D scale: a self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401. Reynolds, C.F., Frank, E., Dew, M.A. et al. (1999) Treatment of 70+ -year-old with recurrent major depression. American Journal of Geriatric Psychiatry, 7, 64–9. Rosenzweig, A., Prigerson, H., Miller, M.D. & Reynolds, C.F. (1997) Bereavement and late-life depression: grief and its complications in the elderly. Annual Review of Medicine, 48, 421–8.

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Segal, D.L., Coolidge, F.L. & Hersen, M. (1998) Psychological testing of older adults, in Clinical Geropsychology (eds I.H. Nordhus, G.R. Van den Bos, S. et al.). American Psychological Association, Washington DC, pp. 231–58. Sheikh, J.I., Swales, P.J., Carlson, E.B. & Lindsley, S.E. (2004) Aging and panic disorder: phenomenology, comorbidity, and risk factors. American Geriatric Psychiatry, 12, 102–9. Spielberger, C.D. (1983) Manual for the State-Trait Anxiety Inventory. Consulting Psychologists Press, Palo Alto CA. Stanley, M.A., Beck, J.G. & Zebb, B.J. (1996) Psychometric properties for four anxiety measures in older adults. Behaviour Research and Therapy: Behaviour Assessment, 34, 827–38. Stroebe, M., Van den Bout, J. & Schut, H. (1994) Myths and misconceptions about bereavement: the opening of a debate. Omega Journal of Death and Dying, 29, 187–203. Van Zelst, W.H., De Beurs, E., Beekman, A.T. et al. (2003) Prevalence and risk factors of post traumatic stress disorder in older adults. Psychotherapy and Psychosomatics, 72, 333–42. Wands, K., Merskey, H., Hanhinsky, V.C. et al. (1990) A questionnaire investigation of anxiety and depression in early dementia. Journal of the American Geriatrics Society, 39, 535–8. Whitbourne, S.K. (2000) The normal aging proces, in Psychopathology in Later Adulthood (ed. S.K. Whitbourne). New York: John Wiley & Sons, pp. 27–59. Wisocki, P.A., Handen, B. & Morse, C.K. (1986) The Worry Scale as a measure of anxiety among homebound and community active elderly. Behavior Therapist, 5, 91–95. Yesavage, J.A., Brink, T.L., Rose, L.R. et al. (1983) Development and validation of a geriatric depression screening scale: a preliminary report. Journal of Psychiatric Research, 17, 37–49. Zarit, S.H. & Haynie, D.A. (2000) Introduction to clinical issues, in Psychopathology in Later Adulthood (ed. S.K. Whitbourne). John Wiley & Sons, New York, pp. 1–26.

7

Suicide and attempted suicide in later life Bob Woods University of Wales Bangor, Bangor, UK

Attitudes to ending one’s own life have varied across history and between cultures. In the UK, in living memory, suicide was classed as a criminal act. Assisting people to kill themselves continues to be so. On the other hand, in Ancient Greece, assisted suicide was available to older people who felt they no longer had anything useful to offer to society (O’Connell et al., 2004); suicide has been viewed at various times and places as an honourable act; and, in the current era, countries such as the Netherlands allow physician-assisted suicide to those for whom life has become intolerable. Debates regarding euthanasia, advance directives and end-of-life care are relevant to all age-groups but are of particular concern to older people with, for example, dementia, this being viewed by many people as a state to be avoided – even worse than death in its advanced stages. In this chapter, rates of suicide and their interpretation will be discussed, before discussing what is known about choice of methods and precipitating factors. The relationship between suicide attempts and completed suicide in older people will be described, and finally the scope for preventative interventions will be considered.

SUICIDE RATES In general, across the world, older people are more likely than any other age group to die by committing suicide; on the other hand, they are much less likely to attempt suicide unsuccessfully (Conwell, Duberstein & Caine, 2002; O’Connell et al., 2004). The picture is, however, much more complex than this simple summary indicates. Rates vary greatly from area to area and internationally. Some of this variation is explicable in terms of differences in systems of recording the occurrence of a suicide. For example, in England and Wales, where coroners have the responsibility for determining the cause of death, practice differs markedly as to the level of evidence of intent that is required before a verdict of suicide is reached, rather than recording the cause of death as open. To allow for this variation, reported rates in England and Wales usually include these ‘open’ verdicts. Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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HANDBOOK OF THE CLINICAL PSYCHOLOGY OF AGEING Table 7.1 Suicide rates (per 100,000 population) as reported to WHO for 2002 or 2003*; global figure is for 2000

Ireland UK USA Japan* France Hungary* Global

Male 65–74

Male 75+

Female 65–74

Female 75+

19.7 8.7 24.7 44.9 38.2 78.5 41.0

9.7 10.4 40.7 45.2 72.4 110.4 50.0

3.1 3.4 4.1 20.9 13.4 20.1 12.1

2.5 3.7 4.1 24.6 16.4 36.1 15.8

In the 1980s, data from a large number of countries indicated that older males had the highest rate of suicide in virtually every country (Cattell, 1994). However, according to figures collated by the World Health Organisation (2007), in a third of countries the highest rate is now amongst young adult males. In the UK, suicide rates in 2002 were highest for men between 25 and 44, and for women between 45 and 54 (World Health Organisation, 2007). Since 1991 in the UK, there has been a reduction for both older men and women in rates of completed suicide. The crossover point, where rates in younger people exceeded those in the over 75s occurred for both males and females around 1996/1997 (Brock et al., 2006). In contrast, in the US, males over the age of 75 remain the most at risk group, being twice as likely to kill themselves as men aged 25 to 34 (World Health Organisation, 2007). The contrast in rates between countries is illustrated by Table 7.1, which compares rates of completed suicide in men and women aged over 65, in the latest year for which figures were available from the WHO database. In all countries, the difference between rates for males and females is clear (as it is at all ages), but the scale of the differences between countries is also evident. Brock et al. (2006) draw attention to the large differences between nations and regions of the UK, with rates in Scotland being especially high. Much has been written to seek to ‘explain’ these differences between and within countries over time. Lindesay (1991) describes the complex interaction between risk factors arising from age effects, cohort membership and the period in history being considered. Period effects include the well known reduction following the detoxification of domestic gas supplies in the UK and the impact of wars. Cohort effects have proved difficult to identify so far but it would not be at all surprising if attitudes to suicide differed between generations. Age effects might include changes in health status and the loss of income and status following retirement, possibly an especially powerful risk factor for men. In England and Wales, Brock et al. (2006) have shown a clear association between indices of deprivation and suicide rates, so that those living in the most deprived areas are most at risk. Lindesay (1991) suggests that it is not poverty per se that is associated with suicide, as rates are low in some of the most disadvantaged groups, who have lived with adversity throughout their lives. Rather, he suggests that it is those who experience financial hardship for the first time in late life who are at increased risk. Ethnicity is also relevant; in the US, for example, rates are lower amongst older men from ethnic groups other than white Caucasian (Conwell, Duberstein & Caine, 2002). In the UK context, it has been suggested that rates are lower in older people from the Indian subcontinent (Lindesay, 1991), although the high rates in Japanese older men, shown in Table 7.1 suggests that

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this cannot simply be attributed to the effects of greater respect for older people in certain cultures.

METHODS Methods adopted vary greatly also. In a study in London (Cattell, 1988), drug overdose was the predominant method used by a third of men and two-thirds of women. Men were twice as likely to use a violent means such as drowning, hanging, or jumping from a height. These findings have been replicated by Harwood et al. (2000). Hanging was the most frequent method used by males in their study of completed suicide in 195 older people (36%). Carbon monoxide poisoning was the second most common means for men (14%). For females, drug overdose was the most common means, with 19% overdosing on antidepressants, 14% on combination analgesics, 11% on paracetamol and 11% on benzodiazepines. In the US, virtually 80% of suicides in men aged 65 and over are carried out with a firearm (Kaplan, Adamek & Johnson, 1994). Guns are rarely used in the UK, except in rural areas where shotguns are more accessible.

PRECIPITANTS Evidence regarding the factors leading to completed suicide comes mainly from psychological autopsy studies, where coroners’ records and relevant healthcare files are examined following the person’s death and a retrospective picture of the circumstances assembled. In some studies (e.g. Harwood et al., 2001), the information documented in records is supplemented by interviews with relatives and/or friends. Inevitably, the information that can be obtained by these means has its limitations. O’Connell et al. (2004) and Conwell, Duberstein and Caine (2002) provide valuable systematic reviews of these studies. Precipitants of suicide in older people in Cattell’s (1988) series included physical health factors, especially pain, with 21% complaining of pain prior to their death. Also cited were poor adjustment to a stroke, hospital discharge and, conversely, the fear of hospitalization. This latter factor received strong support from Loebel et al. (1991). They reported that as many as 44% of older persons committing suicide and leaving an indication of their reasons mentioned their anticipatory fear of being placed in a nursing home. While O’Connell et al. (2004) and Conwell, Duberstein and Caine (2002) acknowledge the association of physical illness and functional impairment with suicide in older people, both reviews conclude that this association is mediated, at least in part, through their relationship with depression. Waern et al. (2002) suggest that serious physical illness may be a stronger risk factor for suicide in men than in women. Cattell (1988) concluded that bereavement, isolation and loneliness were all risk factors for suicide in older people, and there does seem to be evidence implicating life events and lack of social support, including family discord (Conwell, Duberstein & Caine, 2002). Bereavement is a particular factor for older men, who have higher rates of suicide following the death of a spouse (Cattell, 2000; O’Connell et al., 2004). Alcohol is often associated with the act, with around a quarter having alcohol in their blood at post-mortem (29%: Cattell, 1988; 22%: Harwood et al., 2000); its disinhibiting

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effects may facilitate the act and its interaction with other drugs may potentiate their effects. Alcohol abuse is a risk factor for suicide at all ages. Over three-quarters (79%) of people in Cattell’s series showed depressive symptoms prior to death; Harwood et al. (2001) report a slightly lower figure (63%) for a diagnosable depression but overall 77% of their sample were thought to have had a psychiatric disorder at the time of death. Despite this, less than a fifth were receiving care from mental health services at the time of the death and only a quarter had had any such input in the previous year. Around half of those included in the Harwood et al. (2000) series had visited their general practitioner in the month before killing themselves (a quarter in the previous week). Half of these consultations had been in relation to physical problems. Harwood et al. (2001) were also able to evaluate the influence of personality factors, using a case-control design in their psychological autopsy study, with a control group made up of people dying of natural causes, matched for age and gender. Personality disorder, or accentuation of personality traits (particularly of obsessional or anxious types) was identified in 44% of those committing suicide, and these factors, together with depression, were key predictors of suicide. The personality dimension ‘Openness to experience’, has previously been linked with suicide (Conwell et al., 2002; O’Connell et al., 2004). Those who are less open are at higher risk, and may have a difficulty with change and adaptation, similar to that associated with the obsessional type personality traits highlighted by Harwood et al. (2001). The possibility that the onset of dementia may be a risk factor for suicide has been considered. Most studies show no difference in the rates of dementia diagnoses between completed suicides and controls (for example, Harwood et al., 2001) but Harwood (2002) cautions that the risk in the very early stages of dementia should not be overlooked, especially if the person has co-morbid depression. Conwell et al. (2002) draw attention to research indicating that there may be neuropathological changes, of various types, in older people who attempt or complete suicide, compared with controls, and that these may be linked to reduced executive function in people with depression, including older people, who attempt suicide.

ATTEMPTED SUICIDE Attempted suicide is less common in older people: in one study the rate was estimated as a quarter of that in the 15–65 age group (Pierce, 1987). The ratio of attempted to completed suicide is estimated as 4:1 in older people compared with the range of 8:1 to 20:1 reported for younger adults (Pearson & Brown, 2000). Merrill and Owens (1990) have been among those to conclude that the profile of suicide attempters is much closer to that of those who take their own life in older people than in younger age groups. The implication is that parasuicidal gestures, where people harm themselves as a cry for help, or to angrily manipulate others, without strong suicidal intent, are less common in older people. However, such a pattern certainly does occur (Lindesay, 1991) and a range of suicidal intent was found in the sample studied by Pierce (1987). The issue must also be raised of whether such gestures are in fact more likely to lead to death in older patients, who may misjudge the lethality of the method, and their own increased sensitivity to drug effects. The characteristics of a series of 145 older people taken to hospital with deliberate self-harm (DSH) have been documented by Pierce (1987). Men showed the same rate of

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attempted suicide as women, in contrast to completed suicide. In most cases the method adopted was a drugs overdose, involving hypnotics, analgesics, minor tranquillizers and antidepressants in various combinations. The more violent methods have, of course, a higher lethality and so are less frequently seen in attempted suicide. Depression was diagnosed in 93% of cases although in nearly a third of these cases depression was judged to be secondary to housing or financial problems or poor physical health. In fact, 63% were suffering from significant physical illnesses, and in 18% pain or demoralization arising from the illness had clearly led to the attempt. Social isolation was indicated by high proportions widowed and/or living alone. A measure of suicidal intent indicated that men had higher levels of intent to kill themselves than the female patients; high-intent patients also tended to be slightly older, and the overall level of intent was much higher than for younger samples. The rate of repeat nonfatal and fatal attempts was also lower than in other age groups; the few who did later kill themselves had high intent scores at the time of the initial attempt. However, in Nowers’s (1993) sample, 6% had killed themselves within a year of the attempt, which is considered in fact to be a high proportion compared with younger groups. Younger samples typically show a greater preponderance of alcohol abuse and personality disorder, which were relatively rare in Pierce’s sample. Draper (1994) identified alcohol/substance abuse in 32% of a smaller sample of over-65s evaluated after a suicide attempt, together with 26% having a degree of personality abnormality or disorder. Depression was still the most common mental health disorder, present in 87% of cases. Organic brain disease was also more common in Draper’s series (29%), often in men over 75. Pierce identified few such cases, but emphasized their clinical significance, a combination of confusion, depression and disinhibition leading to impulsive but very dangerous attempts at self-harm. Lebret et al. (2006) followed-up, for a period of at least 3 years, 51 older people who had made a suicide attempt. Once again, the original attempts had been precipitated by physical illness of the person or their partner (more common in males), relationship conflict and loneliness or isolation. A fifth experienced severe consequences to their physical health resulting from the attempt, requiring surgery or intensive care in some cases, and this was a factor linked to the increased mortality of the sample as a whole. Two-thirds were diagnosed as having depression at the time of the attempt. A higher proportion than in previous studies (38% of the sample) were identified as having a memory disorder at the time of the initial attempt or during the follow-up period (although a diagnosis of dementia was only made in a third of these cases). These patients had a high risk of mortality, with a quarter dying within a year. A third made a repeat attempt during the year after the memory disorder was disclosed, and a tenth killed themselves. Emphasizing the relatively high-risk of older people who attempt suicide in relation to further, potentially successful attempts, 6% of the sample had taken their own life during the follow-up period, mainly within a year of the original attempt. 16% (all female) made further unsuccessful attempts, mainly overdosing on medication. These figures are similar to those reported by Hepple and Quinton (1997) in a follow-up study of 100 cases of attempted suicide; again, repeat attempts by males all resulted in the person’s death. Dennis et al. (2005) report a study of 76 older people referred following an episode of selfharm. Two-thirds of these (48) were diagnosed as having depression and were compared on a variety of factors with a control group of 50 older people with depression with no history of suicide attempts. Suicide intent in this sample was high, with two-thirds having clearly wished to die when they made the attempt. The rate of life events in the two groups

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of depressed people was similar but those attempting suicide were more likely to have a poorly integrated social network. This lack of social integration was also highlighted in a qualitative study examining the experiences of 15 older people who had attempted suicide (Crocker, Clare & Evans, 2006). Feeling invisible or disconnected from others was one of the key themes emerging in the period leading to the attempt, with feelings of loneliness and detachment being common. Loss of control was a second major theme, with losses relating to health, pain, mobility, social support and social status. For some, the attempt appeared to serve the function of regaining control, with renewed energy following the decision, in that a ‘solution’ had been found; for others, it represented ‘giving up’, a choice forced upon them. For all, it was, however, a means of escape, a common theme in suicidal behaviour (Williams, 1997). The third theme, providing an overall context, was the experience of struggling with life and, in particular, with ageing. Participants had very negative views of ageing, colouring their perspective on their future, and many felt they had experienced discrimination and stereotyping on the basis of their age. This struggle became an ‘inner battle’ in the period leading to the attempt, with some participants exhausted by its intensity. Crocker, Clare and Evans (2006) draw attention to the diversity of experiences and the way in which risk factors – such as poor health, lack of social integration and depression – became meaningful, in part, in that they were interpreted as signifying a hopeless future characterized by further decline, dependency on others and isolation.

HOPELESSNESS AND SUICIDAL IDEATION Suicidal ideation in the absence of depression is said to be quite uncommon in older people (O’Connell et al., 2004). However, the majority of depressed older people do not indicate a desire to kill themselves (Pearson & Brown, 2000). While depression is clearly the predominant factor in suicide and attempted suicide in older people, it is widely recognized that hopelessness is involved in linking depression and suicidal intent (MacLeod, Williams & Linehan, 1992; Pearson & Brown, 2000). It involves a strong expectation that positive outcomes will not occur or that negative outcomes are inevitable. Hill, Gallagher, Thompson and Ishida (1988) have shown that suicidal ideation in older people is predicted by scores on Beck’s Hopelessness Scale (BHS), as well as by level of depression and by physical health ratings. In their comparison of a group of older people with depression who had attempted suicide with a group who had not, Dennis et al. (2005) found that the brief 10-item form of the BHS distinguished the two groups, with those who had attempted suicide reporting significantly higher levels of hopelessness. However, they commented that the standard (20 item) version of the scale appeared to have several items of less relevance to older people and did not discriminate between the groups. Those attempting suicide were also more likely to respond negatively to two items from the short-form (15 items ) of the Geriatric Depression Scale, saying ‘Yes’ to ‘Do you feel your situation is hopeless?’ and ‘No’ to ‘Is it wonderful to be alive now?’

PREVENTATIVE INTERVENTIONS There is considerable scope for application with older people of the cognitive models developed with younger people who attempt suicide. Deficits identified in younger groups

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include poor interpersonal problem solving and reduced ability to regulate affect, as well as hopelessness. Processes such as a difficulty in retrieving autobiographical memories at a specific, rather than a general, level and, similarly, a difficulty in anticipating specific positive experiences would be worth investigating further in the context of late life (MacLeod, Williams & Linehan, 1992; Morris & Morris, 1991). This work has led to new therapeutic approaches, emphasizing a problem-solving approach. An example of the application of a problem-solving approach with older people comes from a large study of 1,800 older people with depression (Unutzer et al., 2006) in a primary care context. Participants were randomized to receive either treatment as usual (with their physician informed of their depression) or collaborative care over a 12-month period, which included input from a depression care manager. Treatment offered included antidepressants as well as problem-solving skills training. Rates of suicidal ideation fell markedly in the intervention group, with there continuing to be a significant reduction a year after the end of the treatment phase. There were no completed suicides in either group and unfortunately no information on suicide attempts was available. The specific contribution of the different aspects of the intervention package has yet to be clarified; it may be, as has been suggested by O’Connell et al. (2004) that active treatment for depression is the key issue in reducing suicide in older people; they point out that the ‘elimination’ of mood disorder would prevent 74% of suicides in older people. Findings from Szanto et al. (2001) suggest that depressed older people with suicidal ideation respond just as well as those without to treatment combining antidepressant medication and interpersonal psychotherapy; however relapse rates are higher and so careful follow-up is needed. DeVries and Gallagher-Thompson (1994) indicate how cognitivebehaviour therapy can be applied to suicidal ideation, with a particular emphasis on automatic thoughts reflecting hopelessness.

CONCLUSIONS Awareness of the risk of suicide in older people is extremely important for psychologists and others working with older people, and an understanding of the factors that may be involved essential. Assessing risk of suicide is an essential component of a mental health assessment (see also Chapter 6, this volume). Efforts at prevention need to be wide ranging; problem-solving interventions and CBT for those who have come to mental health services having already made an attempt; effective follow-up for those with suicidal ideation; better detection of feelings of hopelessness, as well as depression, amongst older people attending primary care for physical health complaints (as many older people do in the period leading up to the attempt); community interventions that enhance social integration; and efforts to reduce the availability of lethal methods (as has happened in the UK with the detoxification of gas supplies and the limits on availability of quantities of analgesics). Examples of these strategies are described from an international perspective by Pearson et al. (1997). This chapter has focused on evident attempts to end life; Harwood (2002) and Pearson and Brown (2000) draw attention to indirect self-destructive and life-threatening behaviour. These behaviours are often associated with institutional settings and may include refusal of food and drink or essential medication. These behaviours may be associated with feelings of hopelessness (Pearson & Brown, 2000) and may reflect the high rates of depression noted in many care homes and hospitals (Ames, 1991).

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Finally, attitudes to suicide are perhaps more ambivalent in relation to older people than with younger age groups. Seven of Cattell’s (1988) series of 104 cases were judged to be ‘rational deaths’, there being no evidence of mental illness. Harwood (2002) suggests that as many as 20% of suicides in older people are not associated with any psychiatric disorder. Do older people not have the right to take their own life, to exercise control over the ultimately inevitable outcome? Carpenter (1993) argues that older people have a unique claim to an ethical, unobstructed suicide, recognizing their developmental autonomy, their wisdom and their experience. Others, such as Lindesay (1991), counter that ageism and therapeutic nihilism underlie attempts to explain away suicides in later life as rational choices. The debate will doubtless continue, especially at a time when public attitudes to voluntary euthanasia appear to be softening. Clearly there is much depression to be treated, much pain that can be relieved, many precautions that can reduce the risk of an impulsive attempt, but suicide can never be eradicated. The debate is an important one; psychologists particularly should bear in mind that depression, negative cognitions and hopelessness are not an inevitable response to adversity in older people (Lam et al., 1987); however, they should also not underestimate the extent of suffering endured by some older people.

REFERENCES Ames, D. (1991) Epidemiological studies of depression among the elderly in residential and nursing homes. International Journal of Geriatric Psychiatry, 6, 347–54. Brock, A., Baker, A., Griffiths, C. et al. (2006) Suicide trends and geographical variations in the United Kingdom, 1991-2004. Health Statistics Quarterly, 31(Autumn), 6–22. Carpenter, B.D. (1993) A review and new look at ethical suicide in advanced age. Gerontologist, 33, 359–65. Cattell, H. (1994) Suicidal behaviour, in Principles and Practice of Geriatric Psychiatry (eds J.R.M. Copeland, M.T. Abou-Saleh & D.G. Blazer). John Wiley, Chichester, pp. 607–14. Cattell, H. (1988) Elderly suicide in London: an analysis of coroners’ inquests. International Journal of Geriatric Psychiatry, 3, 251–61. Cattell, H. (2000) Suicide in the elderly. Advances in Psychiatric Treatment, 6, 102–8. Conwell, Y., Duberstein, P.R. & Caine, E.D. (2002) Risk factors for suicide in later life. Biological Psychiatry, 52, 193–204. Crocker, L., Clare, L. & Evans, K. (2006) Giving up or finding a solution? The experience of attempted suicide in later life. Aging & Mental Health, 10, 638–47. Dennis, M., Wakefield, P., Molloy, C. et al. (2005) Self-harm in older people with depression: comparison of social factors, life events and symptoms. British Journal of Psychiatry, 186, 538–9. De Vries, H.M. & Gallagher-Thompson, D. (1994) Managing psychological crises of older adults, in Cognitive-behavior Strategies in Crisis Intervention (eds F.M. Dattilio & A.M. Freeman). Guilford, New York, pp. 200–18. Draper, B. (1994) Suicidal behaviour in the elderly. International Journal of Geriatric Psychiatry, 9, 655–61. Harwood, D. (2002) Suicide in older persons. In Psychiatry in the Elderly, 3rd edn (eds R. Jacoby & C. Oppenheimer). Oxford: Oxford University Press. Harwood, D., Hawton, K., Hope, T. & Jacoby, R. (2000) Suicide in older people: mode of death, demographic factors, and medical contact before death in one hundred and ninety-five cases. International Journal of Geriatric Psychiatry, 15, 736–43. Harwood, D., Hawton, K., Hope, T. & Jacoby, R. (2001) Psychiatric disorder and personality factors associated with suicide in older people: a descriptive and case-control study. International Journal of Geriatric Psychiatry, 16, 155-65. Hepple, J. & Quinton, C. (1997) One hundred cases of attempted suicide in the elderly. British Journal of Psychiatry, 171, 42–6.

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Hill, R.D., Gallagher, D., Thompson, L.W. & Ishida, T. (1988) Hopelessness as a measure of suicidal intent in the depressed elderly. Psychology and Aging, 3, 230–2. Kaplan, M.S., Adamek, M.E. & Johnson, S. (1994) Trends in firearm suicide among older American males: 1979–1988. Gerontologist, 34, 59–65. Lam, D.H., Brewin, C.R., Woods, R.T. & Bebbington, P.E. (1987) Cognition and social adversity in the depressed elderly. Journal of Abnormal Psychology, 96, 23–6. Lebret, S., Perret-Vaille, E., Mulliez, A. et al. (2006) Elderly suicide attempters: characteristics and outcome. International Journal of Geriatric Psychiatry, 21, 1052–9. Lindesay, J. (1991) Suicide in the elderly. International Journal of Geriatric Psychiatry, 6, 355–61. Loebel, P.J., Loebel, J.S., Dager, S.R. & Centerwall, B.S. (1991) Anticipation of nursing home placement may be a precipitant of suicide among the elderly. Journal of American Geriatrics Society, 39, 407–8. MacLeod, A.K., Williams, J.M.G. & Linehan, M.M. (1992) New developments in the understanding and treatment of suicidal behaviour. Behavioural Psychotherapy, 20, 193–218. Merrill, J. & Owens, J. (1990) Age and attempted suicide. Acta Psychiatrica Scandinavica, 82, 385–8. Morris, R.G. & Morris, L.W. (1991) Cognitive and behavioural approaches with the depressed elderly. International Journal of Geriatric Psychiatry, 6, 407–13. Nowers, M. (1993) Deliberate self-harm in the elderly: a survey of one London borough. International Journal of Geriatric Psychiatry, 8, 609–14. O’Connell, H., Chin, A.-V., Cunningham, C. & Lawlor, B.A. (2004) Recent developments: suicide in older people. British Medical Journal, 329, 895–9. Pearson, J.L. & Brown, G.K. (2000) Suicide prevention in late life: directions for science and practice. Clinical Psychology Review, 20, 685–705. Pearson, J.L., Conwell, Y., Lindesay, J. et al. (1997) Elderly suicide: a multi-national view. Aging and Mental Health, 1, 107–11. Pierce, D. (1987) Deliberate self-harm in the elderly. International Journal of Geriatric Psychiatry, 2, 105–10. Szanto, K., Mulsant, B.H., Houck, P.R. et al. (2001) Treatment outcome in suicidal vs. non-suicidal elderly patients. American Journal of Geriatric Psychiatry, 9, 261–8. Unutzer, J., Tang, L., Oishi, S., Katon, W. et al. (2006) Reducing suicidal ideation in depressed older primary care patients. Journal of American Geriatrics Society, 54, 1550–6. Waern, M., Rubenowitz, E., Runeson, B. et al. (2002) Burden of illness and suicide in elderly people: case-control study. British Medical Journal, 324, 1355. Williams, M. (1997) Cry of Pain: Understanding Suicide and Self-harm, Penguin, London. World Health Organisation (2007) www.who.int/mental health/prevention/suicide/suicideprevent/en/ index.html. Accessed 3 January 2007.

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Psychological trauma in late life: conceptualization, assessment and treatment Steve Davies University of Hertfordshire, Hatfield, UK

WHAT ARE THE MAIN INFLUENCES ON THE LIFESPAN PSYCHOLOGICAL EFFECTS OF TRAUMA? On average, about 15% to 20% of people exposed to traumatic events (such as wartime combat experience) develop lifetime problems with Post Traumatic Stress Disorder (PTSD) as defined by the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV) (Hunt & Robbins, 2001; Yehuda & Davidson, 2000). However, extreme experiences such as being a prisoner of war or a Holocaust survivor can double or even treble these lifetime risks (Clipp & Elder, 1996; Port et al. 2000; Sadavoy, 1997; Speed et al., 1989). There is debate as to whether these effects are caused by neurological change due to stress hormones (Rosen, 2004; Yehuda, 1999), by society’s reaction to traumatized people (Bracken, 2002) or by a combination of both of these factors (Brewin, 2003; McNally, 2003). It should be emphasized that other traumatic experiences, such as abuse and neglect in childhood, may also have sequelae in later life. For example, Foster et al. (2003) reported lower levels of current psychological wellbeing in older people who experienced ‘evacuation’ as children during Word War Two, being separated from their parents and sent to ‘safe’ areas of the UK; a number of evacuees reported they had been physically and/or sexually abused in the families to which they had been sent (Waugh et al., 2007), with such abuse reported by twice as many of those who had been evacuated compared with a control group. Reviews of the effects of trauma on older people do not usually divide those traumatic experiences undergone earlier in life from those undergone in old age (Averill & Beck, 2000; Davies, 2001; Ruskin & Talbott, 1996; Sadavoy, 1997; Weintraub & Ruskin, 1999). However, old age itself does not seem to be a risk factor in the development of traumatic stress reactions; there is in fact some evidence that it may have a protective effect (Solomon & Ginzburg, 1999). There is also disagreement about whether such long-term effects are Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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entirely negative or permanent (Tedeschi & Calhoun in Linley & Joseph, 2004). However, the long-term psychological effects of World War Two are said to be reflected in higher rates of PTSD (Hunt & Robbins, 2001; Spiro et al., 1994), general mental health problems (Hierholzer et al., 1992; Orner & De Loos, 1998), physical health problems (Buffum & Wolfe, 1995; Schnurr, Spiro & Paris, 2000), sleep disorders (Engdahl et al., 1999; Guerrero & Crocq, 1994), addiction problems (Parette et al., 1989) and personality change (Hyer & Boyd, 1996).

SOME CENTRAL ISSUES IN KEEPING A TRAUMA ALIVE Trauma ‘Dose’ The extent and intensity of exposure does appear to be a factor in long-term psychological trauma (Brewin, 2003; Jones & Barlow, 1990; Yehuda, 1999). Survivors of extreme wartime experiences such as the Holocaust or prisoner of war camps in the Far East demonstrate more persistent and chronic features of PTSD into old age than do other groups of World War Two participants. This may be due to higher rates of disability because of the physical damage inflicted by such extreme experiences, leading to higher risk of ill health in old age. The experience of being subject to a cruel and arbitrary regime may even cause impairment of trust and relationships through a ‘pathological reparenting’ process (McCarthy & Davies, 2003). However, the ‘PTSD approach’, which is rooted in a male, combat-dominated narrative really only provides an event-based view of trauma (Bracken, 2002; Davies, 2005). Complex trauma such as abuse and neglect experiences in childhood (Herman, 1992) or the lifelong psychological impact of traumatic experiences do not fit so easily with this approach (Davies, 2004). The view that the ‘dose’ of, or exposure to, trauma is the most important predictor of subsequent psychological problems can lead to a very crude interpretation of the longterm effects of events. What seems to be more important is the meaning that is attached to such events and their aftermath (Janoff-Bulman, 1992; Linley & Joseph, 2005; Tedeschi & Calhoun, 2006).

Individual Differences in the Affected Population Individuals’ biological sensitivity, psychological history, their coping and social skills are all important in the long-term reaction to trauma (Bowman, 1997). Vulnerabilities in resilience and personality development may account for some differences in rates of long-term reactions to trauma (Wessely et al., 1999; Yehuda, 1998, 1999). However, it is difficult to conceive of a situation that is not improved by appropriate emotional and social support and this may be more readily available to more psychologically and socially advantaged people (Bracken, 2002). Weintraub and Ruskin (1999) indicated that factors such as premorbid personality, premorbid psychiatric history and severe psychological deprivation could increase the risk for a lifetime post-traumatic stress reaction. Bowman (1997) and Yehuda (1999) have emphasized the role of individual differences in the development and maintenance of long-term

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psychological effects of traumatic experiences. For example, Clipp and Elder (1996) studied Second World War United States Navy veterans and concluded that adolescent psychological difficulties, younger age at ‘call up’, higher combat exposure, lack of support of others post-conflict and whether the veterans had been a Prisoner of War (POW) increased the long-term psychological impact of trauma.

The Social Context of Trauma in Late Life Dominant social narratives often determine how individuals are allowed to relate to their traumatic experiences (Bracken & Petty, 1998; Davies, 2001). Finding a sympathetic subgroup within the cohort, particularly when it involves others who have been through a similar experience, may allow habituation to traumatic material even if the dominant narrative does not, in fact, support the lived experience of the individual. For example, a war veteran may have witnessed atrocities by comrades and incompetence or cowardice by superiors and may not be able to get this story to ‘fit’ with the public narrative of this conflict. However, the veteran’s narrative can be told within a smaller group, which shares the veteran’s view of things. In late life, individuals who have experienced complex trauma such as abuse or neglect in childhood, particularly when associated with shame and guilt, may still find it hard to have their experiences validated by others (Davies, 2004). Thus, lifespan psychological impact of trauma may be as much mediated by what older people are allowed to talk about as by the nature and extent of the traumatic experiences that they underwent.

The Role of Emotional and Social Support The social and emotional support of others in the moderation of psychological distress, and particularly after traumatic experiences, significantly affects long-term PTSD outcomes (Harvey & Pauwels, 1999; Hunt, Marshall & Rowlings, 1997). Its importance in older people has also become well established in the literature (see Power & Lam, 1989). The role of social and emotional support in the attenuation of the long-term psychological effects of war is an area where there is also some agreement about the important moderating role of these factors (Bowman, 1997; Van der Kolk, McFarlane & Weisraeth, 1996). Hunt and Robbins (2001b) examined the role of social support in the long-term psychological reactions of UK World War Two veterans. They found that veterans derive different kinds of support from different sources. For example, an inability to attend veterans’ association meetings may be seen as a marginal change in activity by others but may represent a severe loss to the combat veteran who may use such an activity for moderating psychological trauma. Family and statutory service support may be very useful for general assistance in old age but exploration of war trauma experiences may have to occur outside this immediate context. On the other hand, overinvestment in reparative adult relationships may actually contribute to avoidance of childhood trauma effects (Davies, 2004; Gagnon & Hersen, 2002) and could lead to a higher risk of significant psychological difficulties on the termination of such a relationship in old age through factors such as death, illness or dementia.

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PSYCHOLOGICAL ASSESSMENT OF THE TRAUMATIZED OLDER PERSON Trauma assessments comprise a specialized section of a comprehensive, cohort-sensitive and context-specific review of an older person’s life position and challenges (Briere, 2002; Knight, 2003; see also Chapter 26, this volume). The resources to cope with adverse events are derived from a combination of lifetime constitutional and social learning factors and the interpersonal and social support context in which such events take place (Bowman, 1997; Bracken, 2002; Yehuda, 1999). There are some assessment factors that do require special consideration in this group (Busuttil, 2004; Owens et al., 2005) and these will be illustrated with reference to the following two case vignettes: Case 1: Charlie has Alzheimer’s disease. He was referred to the mental health service because he is usually up all night and nursing home staff have found some food and knives concealed in his mattress. Discussion with his family reveals that he was a commando in Burma during the war. Case 2: Betty seems very worried about what is going to happen to her on the ward. She was admitted to hospital in a very confused state after a fall at home. Although physically well, she remains very agitated. She was transferred from a medical unit to the psychiatric ward with a diagnosis of dementia. Staff are puzzled that Betty does not seem at all confused now and her younger sister discloses that they were often badly beaten by their alcoholic father as children.

Indirect Presentation Traumatized older people often present to services other than those offering mental health interventions. Older people tend to present emotional difficulties in more somatic terms and they are not immune from stereotypical fears about the type and nature of mental health services available (Woods, 1999). In addition, many older people who have suffered trauma earlier in life may not present with classic PTSD symptoms as these have had a lifetime to mutate into automatic responses to stressful events; responses to which significant others have adapted (Hyer & Boyd, 1996). Older people may often present to generic health services, which need to be alert to the effects of PTSD. Mental health professionals involved in geriatric liaison work may also have to consider quite atypical presentations of trauma (Yehuda & Davidson, 2000). For example, the presentation of an older person in a confused and agitated state at a hospital emergency department usually leads to differential diagnoses of delirium, dementia or even sometimes depression but a dissociative state is rarely considered. Life events relating to previous trauma could, however, trigger such reactions which should be considered when this state resolves quickly (Owens et al., 2005). Dissociation could be considered in Betty’s case.

Reactivation of Trauma in Late Life Reactivation of trauma in late life has been observed by a number of commentators (for example, Hyman, 1997; Macleod, 1995; Pauwells, 1996). Such reactivation often occurs in the context of the common loss-related events of late life such as retirement, bereavement,

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illness and disability or moving to different accommodation and is thus seen as being triggered by these events (Bar-Tur & Levy-Shiff, 2000). This reactivation may be a resurgence of previously experienced PTSD symptoms or may present in more indirect ways through fearfulness, depression or anger. Extreme experiences, such as wartime imprisonment in the Far East or Holocaust survival, may have caused immunological damage and physical symptoms which may be mistaken as an inevitable part of the ageing process (Solomon, 1992). The reactivation may not just be verbal in nature – previously learned patterns of behaviour to ensure survival may also come into play. Charlie’s vigilance, movement at night and hoarding may be a learned reaction to an unfamiliar environment.

No Need to Mention the War – Disclosing Trauma at Assessment Cohort effects such as an education system that encouraged physical prowess and demeaned emotional expression, or a society that avoided child neglect and abuse issues, may lead to difficulties in engaging with clients at assessment. Minimizing distress and avoiding reminders of trauma may be deployed to the detriment of any trauma assessment (Fontana & Rosenheck, 1994). Some studies (such as Erskine, Kvavilashvili, Myers & Conway, 2007) have suggested that older people use high levels of thought suppression as a coping mechanism and this needs to be borne in mind when assessing this group for the effects of trauma. Understatement or avoidance may be an important consideration, and repeated assessment of the impact of trauma may be required. In Charlie’s case his experiences during the war could have easily been overlooked by concentrating only his dementia as an account for his behaviour.

Guilt and Regret The role of secondary emotion in the maintenance of trauma, particularly guilt and regret, should also be considered. Trauma involving high levels of horror, humiliation and other uncontrollable aspects could lead to more complex, lifetime effects (Davies, 2001; Rothschild, 2003) not only because of its direct impact but because of its effect on thinking patterns. There is evidence that trauma reactions that include high levels of survivor guilt tend to be more longstanding into late life (Bonwick & Morris, 1996; Sadavoy, 1997). In addition, a recent study has suggested that the high occurrence of regret in late life can interfere with the reminiscence process (McKee et al., 2005). Thus, trauma may be associated with the life review process, often thought to be essential to psychological adjustment in late life because it activates negative patterns of thinking (Smyer & Qualls, 1999) or images about trauma (Macleod, 1995). A thorough psychological assessment should include some account of how traumatic experiences are being reconciled with the life review process (or not). Betty’s dissociation from childhood abuse may interfere with any life review process that has been triggered as a result of her hospitalization.

Type of Trauma In assessing the older person who has been traumatized, the type as well as the dose of trauma is important. This is not only because of the original features of the trauma, such as

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its controllability, and the subsequent social support received by the sufferer. It is also about the impact the features of a trauma have on those psychological processes that maintain equilibrium during a period of great change and loss. Even in the combat literature, clearly defined, event-based trauma with a socially supported and valued outcome (such as some combatants’ experience of World War Two) appears to leave fewer permanent marks across a life than a less prolonged but more ambivalent conflict such as Korea (McCranie & Hyer, 2000). More diffuse and prolonged trauma such as childhood abuse and neglect may have more insidious effects across the lifespan (Gagnon & Hersen, 2000). The impact of trauma experienced as a child is thought to have amplified effects because of the helplessness experienced and the child’s incomplete cognitive development (Bifulco & Moran, 1998). Such effects rarely present as event-related PTSD and are usually better assessed in terms of the evaluation of lifetime effects on relationships and mental health, with any such legacy examined at the client’s pace. As mentioned earlier, age itself does not present as an obstacle to trauma adjustment, but early trauma has had a long time in which to work its effects on the person, who was at a critical point of development at the time of the experience. Betty did not regard herself as being traumatized, indicating that ‘you just got on with it then’. She was only able to disclose that her father abused her sexually, as well as physically, after discussion with her family nearly two years after her first contact with services.

The Issue of Comorbidity Older people with a traumatic legacy may have a number of sometimes interrelated problems with which to deal. The issue of several physical and mental conditions exerting various influences or co-morbidity, is a common feature of the assessment of the older people (Katona, 2000). Physical illness, substance use, depression and anxiety are comorbid with PTSD in almost 89% of cases using various epidemiological data (Yehuda & Davidson, 2000). Often these problems may present first and the trauma experience may not be evident and may require some elaboration. Sometimes the older person will not see the connection between past trauma and current behaviour and this may also require some further exploration.

Measuring PTSD in Older People Older people generally tend to have lower scores on measures of psychological distress and mental health problems (Beech & Harding, 1990). The use of psychometric instruments with older people with trauma can be quite problematic as few norms exist for most of the measures developed for use in PTSD; in addition, older people tend to have physical and related problems that can affect the measures used, as they often include ratings of physiological reactions. However, one of the few measures that have been validated with this group is the Impact of Events scale (Robbins & Hunt, 1996). Robbins and Hunt showed that older people with PTSD had lower scores on the IES than younger people, and they provide some adjustment of the norms for use with older people. The revised version of the IES (Resnick et al., 1992) includes a physiological overarousal factor, thus making it less reliable than the original version (Horowitz et al., 1969).

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TREATING THE OLDER PERSON WITH PTSD PSYCHOLOGICALLY Will Standard Treatments for PTSD Work with Older People? One of the difficulties in working psychologically with older people is that many outcome studies of psychological treatment either exclude older people or do not report agedifferences in therapeutic response. (Knight et al., 1993). However, in trauma work there does seem to be some evidence that the interventions used with younger individuals should contain some universally useful elements such as some sort of sustained exposure to the feared stimulus or its imaginal equivalent (McNally, 2003; Yehuda, 1999) and changing the negative appraisal of the trauma and its sequelae (Ehlers & Clark, 2000). The basic neural process of habituation to a feared stimulus is unlikely to be affected by age, although some elements of the brain’s fear conditioning system, such as the hippocampus, are implicated in the dementias; this may suggest exercising caution in trauma treatment with people with significant cognitive impairment (Hyer & Sohnle, 2001; Owens et al., 2005). In the UK, clinical guidelines produced by NICE (2005) recommend the use of traumafocused cognitive behavioural therapy and eye-movement desensitization and reprocessing (EMDR). Thus, exposure treatments are the ones that are thought to be the most efficacious for adults of any age. The research literature is less clear about the efficacy of particular treatments for older survivors of trauma; the treatment populations studied may well be unrepresentative (Spinazzola, Blaustein & Van der Kolk, 2005). There are some reports of psychological interventions with either individuals (for example, Macleod et al., 1994; Schnurr & Spiro, 1999) or groups (for example, Black et al., 1999). In the circumstances, CBT has been established as an effective treatment for both the psychological problems of late life (Laidlaw et al., 2003; see also Chapter 27, this volume) and for trauma (Follette & Ruzek, 2005) and so it is reasonable to assume that older people with problems with trauma should benefit from exposure-based CBT. Other forms of psychological therapy are less well developed but considering that all ‘talking treatments’ involve at least some indirect exposure they may have some effect in this way. Psychodynamic psychotherapy (see Chapter 28, this volume), for example, examines trauma from the viewpoint of a set of assaults on the ego which return to haunt the affected individual in old age (Garner, 2005). Knight (2003) describes this conflict as a ‘maturity-specific challenge’ issue where trauma issues brought from earlier in life rub up against the specific challenges that the individual has to face in old age. Brodaty et al. (2004) noted in their study of older Holocaust survivors that less well-developed psychological defences and high neuroticism usually led to more difficulties

Special Considerations for Exposure Based Psychological Therapy with Traumatized Older People Working memory and speed of information processing declines to some extent with age (see Chapter 3, this volume) and thus consideration needs to be given to slowing the pace of therapy and reducing the amount of psychoeducational material given at any one time.

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However, age itself should not necessarily prove a bar to participating in trauma therapy. Exposure to reminders of traumatic material through therapy and the resultant autonomic arousal may produce problems for older people with medical conditions or with severe cognitive impairment (Busutti, 2004; Owens et al., 2005). Medical advice should be sought in such cases and, if necessary, indirect consultative work with others around the person should be undertaken instead. Charlie was unable to spend much time talking but the account of his behaviour provided by the therapist enabled staff to adjust their routines to his needs more and to identify and remove risks such as knives. He was also given nonperishable food to store in his room. As mentioned previously, older people may use thought suppression as a coping tool more frequently than younger people (Erskine, Kvavilashvili, Myers & Conway, 2007). Thus, an exposure-based intervention may need more time at the treatment-socialization stage to address this tendency. Older people are, at times, in a position of social powerlessness, where the opinions and views of others take precedence. Thus the worries and avoidance of others such as family members or professionals may also need to be taken into account. Well-meaning but essentially ageist concerns about whether the older person is capable of undergoing therapy may need to be balanced against the person’s wish to achieve some sort of coherent narrative about these experiences. Older people have also had longer to perhaps accumulate a number of traumatic experiences, and consideration needs to be given to the benefits of resolving these experiences against the painful cost of having to visit them again (McCarthy & Davies, 2003). However, this is the inevitable calculation for all psychological therapy. Betty was determined to discover what was making her unhappy and persisted with therapy despite the concern of her family who felt that she just needed rest. Their worries receded as Betty began to engage with them in ways that reminded them ‘of our old mum’.

What Should a Psychological Treatment for an Older Person with Trauma Look Like? The basic task of all psychological treatment in this area should be to re-establish some degree of narrative coherence in a person’s life. Trauma interrupts the individual’s life story and presents individuals with intrusively uncomfortable versions of themselves such as the loving grandfather who is a killer soldier or the ‘nice’ grandmother who is a furious, frightened survivor of abuse. Follette and Zadek (2005) indicate that psychological interventions for PTSD need to contain a degree of exposure to the feared situations to be effective. Clear goals, a sound therapeutic relationship and ‘staying in the present’ are also needed. Relaxation and mindfulness skills are essential tools for change through harnessing strong emotion. Hyer and Sohnle (2001) propose a model of treatment specifically for use with older people with trauma. They indicate that the promotion and maintenance of positive core memories (PCMs) about the self is essential to coping effectively with traumatic experiences. Their intervention involves early stages of symptom stabilization, where comorbid disorders are dealt with, and relationship building with the client to engender the trust needed to deal with traumatic material. In addition, developmental and social supports are identified and discussed to promote treatment concordance. The main treatment phase involves building

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on PCMs around the traumatic experiences in order to produce a sense of the present and the past being tied together thus promoting a coherent self-narrative. This involves the detailed examination of and neutralizing of trauma memories. If problems are encountered with these memories then interventions for dealing with personality structure (such as schema-focused work) or with excessive intrusions (for example, EMDR) are applied. Hyer & Sohnle’s model requires further empirical validation but it contains the elements that are known to work in trauma therapy together with a consideration of the special issues for older people such as life review and confrontation with end of life and other existential issues. The model also begins to address the wider experience of being older, embracing concepts such as counterfactual thinking (Roese, 2005) when the ‘what might have beens’ of life are confronted in late life and the regrets about decisions made and opportunities lost have to be accounted for.

REFERENCES Bar-Tur, L. & Levy-Shiff, R. (2000) Coping with losses and past trauma in old age: the separationindividuation perspective, in Post-traumatic Stress Theory: Research & Applications (eds J.H. Harvey & B.G. Pauwels). Taylor & Francis, Philadelphia. Beech, D. & Harding, A. (1990) Assessment in the Elderly. NFER-Nelson, London. Bifulco, A. & Moran, A. (1998) Wednesday’s Child: Research into Women’s Experience of Neglect and Abuse in Childhood and Adult Depression. Routledge, London. Birtchnell, J. & Kennard, J. (1984) How do the experiences of the early separated and the early bereaved differ and to what extent do such differences affect outcome? Social Psychiatry, 19, 163–70. Black, D., Newman, M., Harris-Hendriks, J. & Mezey, G. (eds) (1997) Psychological Trauma: A Developmental Approach. Gaskell, London. Bonwick, R. & Morris, P. (1996) Post-traumatic stress disorder in elderly war veterans. International Journal of Geriatric Psychiatry, 11, 1071–6. Bowman, M. (1997) Individual Differences in Posttraumatic Response: Problems with the AdversityDistress Connection. Lawrence Erlbaum Associates, London. Bracken, P. (2002) Psychological Trauma. Whurr, London. Bracken, P. & Petty, C. (eds) (1998) Rethinking the Trauma of War. Free Association Books, London. Brewin, C. (2003) Post Traumatic Stress Disorder: Malady or Myth? Harvard University Press, Cambridge MA. Briere, J. (1997) Psychological Assessment of Adult Posttraumatic States. American Psychological Association, Washington DC. Buffum, M.D. & Wolfe, N.S. (1995) Posttraumatic stress disorder and the World War II veteran. Geriatric Nursing, 16(6), 264–70. Busuttil, W. (2004) Presentations and management of post-traumatic stress disorder and the elderly: a need for investigation. International Journal of Geriatric Psychiatry, 19, 429–39. Calhoun, L. & Tedeschi, R. (eds) (2006) Handbook of Posttraumatic Growth: Research and Practice. Lawrence Erlbaum Associates, Mahwah NJ. Chung, Man Cheung, Werrett, J., Easthope, Y. & Farmer, S. (2004) Coping with post-traumatic stress: young, middle-aged and elderly comparisons. International Journal of Geriatric Psychiatry, 19, 333–43. Creamer, M, Bell, R. & Failla, S. (2003) Psychometric properties of the Impact of Event Scale-Revised. Behaviour Research and Therapy, 41, 1489–96. Davies, S. (2001) The long-term psychological effects of traumatic experiences. Aging and Mental Health, 10(8), 99–103. Davies, S. (2003) The late-life psychological effects of childhood abuse. Current Medical Literature, 16(4), 83–7.

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Davies, S. (2004) If only: some psychological ideas about why the war may still bother some people. Children in War, 1(2), 103–8. Dunlop, J. (1998) The effects of war on mental health. Journal of the Royal Society for Health, 118(3), 156–8. Ehlers, A. & Clark, D. (2000) A cognitive model of posttraumatic stress disorder. Behaviour Research and Therapy, 38, 319–45. Erskine, J., Kvavilashvili, L., Myers, L. & Conway, M. (2007) The effects of age on well-being, psychopathology and repressive coping. Aging and Mental Health, 11, 394–404. Everett, B. & Gallop, R. (2001) The Link between Childhood Trauma and Mental Illness: Effective Interventions for Mental Health Professionals. Sage Publications, Thousand Oaks CA. Follette, V. & Ruzek, J. (eds) (2006) Cognitive-Behavioral Therapies for Trauma, 2nd edn. Guilford Press, New York. Foster, D., Davies, S. & Steele, H. (2003) The evacuation of British children during World War II: A preliminary investigation into the long-term psychological effects. Aging and Mental Health, 7(5), 398–408. Gagnon, M. & Hersen, M. (2000) Unresolved childhood sexual abuse and older adults: late-life vulnerabilities. Journal of Clinical Geropsychology, 6(3), 187–98. Healy, D. (1993) Images of Trauma: From Hysteria to Post-Traumatic Stress Disorder. Faber & Faber, London. Herman, J. (1994) Trauma and Recovery. Basic Books, New York. Hierholzer, R., Munson, J., Peabody, C. & Rosenberg, J. (1992) Clinical presentation of PTSD in WWII combat veterans. Hospital and Community Psychiatry, 43(8), 816–20. Hilton, C. (1997) Media Triggers of Post-Traumatic Stress Disorder 50 Years After the Second World War. International Journal of Geriatric Psychiatry, 12, 862–7. Hunt, L., Marshall, M. & Rowlings, C. (eds) (1997) Past Trauma in Late Life: European Perspectives. Sage, London. Hunt, N. & Robbins, I. (2001a) World War II veterans, social support and veteran’s assocations. Aging and Mental Health, 5(2), 175–82. Hunt, N. & Robbins, I. (2001b) The long-term consequences of war: the experience of World War II. Aging and Mental Health, 5(2), 183–90. Hyer, L. & Boyd, S. (1996) Personality Scales as predictors of older combat veterans with PTSD. Psychological Reports, 79(3), 1040–2. Hyer, L. & Sohnle, S. (2001) Trauma Among Older People: Issues and Treatment. Brunner-Mazel, New York. Hyman, I. (1997) Post-traumatic stress in the elderly, in Psychological Trauma: A Developmental Approach. (eds D. Black, M. Newmans, J. Harris-Hendriks & G. Mezey). Gaskell Publications, London. Janoff-Bulman, R. (1992) Shattered Assumptions: Towards a New Psychology of Trauma. Simon & Schuster, New York. Katona, C. & Livingston, J. (1997) Comorbid Depression in Older People. Martin Dunitz, London. Knight, R. (2003) Psychotherapy with Older People, 3rd edn. Sage, New York. Knight, R., Gallagher-Thompson, E., Gallagher-Thompson, D. & Blazer, D. (eds) (2001) Psychotherapy with Older Adults: A Life-span Perspective. American Psychological Association Press, New York. Kohn, R., Levav, I., Garcia, I. et al. (2005) Prevalence, risk factors and aging vulnerability for psychopathology following a natural disaster in a developing country. International Journal of Geriatric Psychiatry, 20, 835–41. Laidlaw, K., Gallagher-Thompson, D., & Beck, A. (2003) (eds) Cognitive Behaviour Therapy with the Elderly. John Wiley & Sons, Chichester. Landau, R. & Litwin, H. (2000) The effects of extreme early stress in very old age. Journal of Traumatic Stress, 13, 3, 473–87. Leys, R. (2000) Trauma: A Genealogy. University of Chicago Press, Chicago. Linley, A. & Joseph, S. (eds) (2004) Positive Psychology in Practice. John Wiley & Sons, Chichester. Macleod, A.D. (1995) The reactivation of post-traumatic stress disorder in later life. Australian and New Zealand Journal of Psychiatry, 28(4), 625–34.

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McCarthy, G. & Davies, S. (2003) Some implications of attachment theory for understanding psychological functioning in old age: an illustration from the long-term psychological effects of World War Two. Clinical Psychology and Psychotherapy, 10, 144–55. McCranie, E. & Hyer, L. (2000) Posttraumatic stress disorder symptoms in Korean Conflict and World War II combat veterans seeking outpatient treatment. Journal of Traumatic Stress, 13(3), 427–39. McNally, R. (2003) Remembering Trauma. Harvard University Press, Cambridge MA. Orner, R.J. (1992) Post-traumatic stress disorders and European war veterans. British Journal of Clinical Psychology, 31(4), 387–403. Owens, G., Baker, D., Kasckow, J. et al. (2005) Review of assessment and treatment of PTSD among elderly American armed forces veterans. International Journal of Geriatric Psychiatry, 20, 1118– 30. Power, M. & Lam, D. (1989) Social support in the elderly. Psychology and Health, 22(3), 76–9. Resick, P. (2001) Stress and Trauma. Psychology Press, Hove. Robbins, I. & Hunt, N. (1996) Validation of the IES as a measure of the long-term impact of war trauma. British Journal of Health Psychology, 1, 87–9. Rosen, F. (2004) Post Traumatic Stress Disorders: Concepts and Controversies. John Wiley & Sons, New York. Ruskin, P. & Talbot, J. (1996) Aging and Posttraumatic Stress Disorder. American Psychiatric Association Press, Washington DC. Sadavoy, J. (1997) A review of the late-life effects of prior psychological trauma. American Journal of Geriatric Psychiatry, 5, 287–301. Scaer, R. (2005) The Trauma Spectrum: Hidden Wounds and Human Resiliency. W.W. Norton & Company, New York. Schnurr, P. & Spiro, A. (1999) Combat exposure, posttraumatic stress disorder symptoms, and health behaviors as predictors of self-reported physical health in older veterans. Journal of Nervous and Mental Disease, 187, 353–9. Schnurr, P.R., Spiro, A., Aldwin, C. & Stukel, T. (1998) Physical symptom trajectories following trauma exposure: longitudinal findings from the normative aging study. Journal of Nervous and Mental Disease, 186(9), 522–7. Smyer, M. & Qualls, S. (1999) Aging and Mental Health. Blackwells Publishing, New York. Solomon, Z. (1992) From front line to home front; a study of secondary traumatisation. Family Process, 31, 289–302. Spinazzola, J., Blaustein, M. & Van der Kolk, B. (2005) Posttraumatic stress disorder treatment outcome research: the study of unrepresentative samples? Journal of Traumatic Stress, 18(5), 425–36. Spiro, A., Schnurr, P. & Aldwin, C. (1994) Combat-related posttraumatic stress disorder symptoms in older men. Psychology and Aging, 9(1), 17–26. Tarlow, S. (1999) Bereavement and Commemoration: An Archaeology of Mortality. Blackwell, Oxford. Van der Kolk, B., MacFarlane, H. & Weisraeth, B. (eds) (1996) Experiencing Trauma. Guilford, New York. Waugh, M.J., Robbins, I., Davies, S. & Feigenbaum, J. (2007). The long-term impact of war experiences and evacuation on people who were children during World War Two. Aging and Mental Health, 11, 168–74. Weintraub, D. & Ruskin, P. (1999) Posttraumatic stress disorder in the elderly: a review. Harvard Review of Psychiatry, 7, 144–52. Woods, R. (1999) Psychological Problems of Ageing. John Wiley & Sons, Chichester. Yehuda, R. (ed.) (1998) Psychological Trauma. American Psychiatric Association Press, Washington DC. Yehuda, R. (ed.) (1999) Risk Factors for Posttraumatic Stress Disorder. American Psychiatric Association Press, Washington DC. Yehuda, R. & Davidson, J. (2000) Clinician’s Manual on Posttraumatic Stress Disorder. Science Press, London.

9

Late onset psychosis Linda Clare University of Wales Bangor, Bangor, UK

and Sharon Giblin Engage Service, Staffordshire Youth Offending HQ, Stafford, UK

Late onset psychosis (LOP) affects 2% to 4% of people over 60 years old (Almeida et al., 1992). Treatment methods remain primarily pharmacological, although only around half will recover with medication (Howard & Levy, 1992). Recent advances in the development of psychological approaches to treating psychosis with onset during adolescence or adulthood are only just beginning to impact on the treatment of older people who develop psychotic symptoms for the first time in late life. Howard et al. (2000) note that psychosocial and behavioural approaches should be seen as important adjuncts to pharmacological therapies and require development and evaluation. This is an area where clinical psychologists are well placed to make an important contribution.

THE CONCEPT OF LATE ONSET PSYCHOSIS People who have had long-standing psychotic symptoms may continue to have difficulties and require psychological and practical support as they move into later life. In addition, however, some older people develop psychotic symptoms for the first time in later life. Sometimes these symptoms may be secondary to another problem, such as dementia, or part of a depression, but in many cases they represent a primary disorder. The precise nature of late onset psychosis has been the subject of much debate in the psychiatric literature. Roth & Morrissey (1952, cited in Almeida et al., 1992) proposed the term ‘late paraphrenia’ to refer to: ‘. . . a specific group of elderly patients with a wellorganised system of paranoid delusions and hallucinations, existing in the setting of a well preserved personality and affective response.’ This term was rapidly adopted to distinguish late onset psychosis from chronic schizophrenia (Howard et al., 2000), which usually involves a deterioration of personality and affective response in addition to positive symptoms. Late paraphrenia has been used to describe a variety of psychotic phenomena that first emerge after the age of 55 or Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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60. The term ‘late onset schizophrenia’ has more often been used to describe the emergence of psychosis between the ages of 40 and 60, although the two terms have also been used interchangeably, and reviews of this area often mix findings on late onset schizophrenia with those on late paraphrenia (Riecher-Rossler et al., 1995). Almeida and colleagues (Almeida et al., 1992, 1995a) have argued for a specific diagnostic category of ‘late onset psychosis’ (LOP), occurring for the first time after the age of 60 and characterized by a well-organized delusional system, with or without hallucinations and with no obvious deterioration of intellect or personality. Understanding of LOP has been further complicated by the debate concerning whether it is simply schizophrenia manifesting in later life or whether it is an aetiologically distinct disorder (for a review, see Almeida et al., 1995a). Although the aetiologies and distinctive pathophysiologies of earlier onset schizophrenias are at present unknown (Howard et al., 2000), brain imaging and neuropsychological studies have provided new evidence in relation to this debate. The nonspecific structural changes found in people with earlier-onset schizophrenia are also found in people with LOP and brain-imaging findings are essentially similar regardless of age of onset (Howard et al., 2000; Roth & Kay, 1998). Similarly, people with LOP show similar patterns of impairment to people with earlier-onset schizophrenia on neuropsychological measures (Howard et al., 2000). For instance, when compared to age, sex and education-matched controls, people with LOP scored significantly lower on measures of general cognitive ability and executive functioning (Almeida et al., 1995a). However, compared with earlier-onset schizophrenia, people with LOP tend to have milder deficits, especially in the areas of learning and abstraction/cognitive flexibility (Howard et al., 2000). Whilst brain imaging and neuropsychological studies have shown few significant differences with age of onset, the clinical presentation of early-onset schizophrenia and LOP show some distinctions. A study that compared people with very early onset (before age 25) and people with very late onset (beginning after age 60) psychosis, found that the older group was more likely to be female, have good premorbid functioning and developmental history, and to exhibit persecutory delusions and hallucinations (Castle et al., 1997). They were less likely to have negative schizophrenic symptoms, a positive family history of schizophrenia, or to have suffered pregnancy or birth complications. Other researchers (Howard et al., 1997; Jeste et al., 1997) have also reported a weaker genetic link in LOP than in earlier-onset schizophrenia. Recently, an international consensus has emerged (Howard et al., 2000), acknowledging that there are both similarities and differences between earlier and late onset psychosis but concluding that there is sufficient evidence to justify the recognition of two illness classifications: late onset (onset after the age of 40 years) schizophrenia and a very late onset (onset after 60) schizophrenia-like psychosis (VLOSLP). This chapter focuses on the specific group of elderly people described by Almeida et al. (1992, 1995a) and the VLOSLP group distinguished by Howard et al. (2000). Here the term LOP will be used to refer to people who first develop psychotic symptoms after the age of 60 and who do not exhibit significant cognitive deterioration or a primary affective disorder.

PREVALENCE AND INCIDENCE OF LOP The use of different terms and criteria has made it difficult to ascertain prevalence rates. Epidemiological information has come from studies of persons who have reached psychiatric

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services and surveys of elderly persons sampled from the general population (Henderson & Kay, 1997). Patient studies show that between 5.6% and 10% of psychiatric admissions over the age of 60 are for LOP (Christie, 1982; Kay & Roth, 1961). First admission data suggests that the annual incidence of LOP increases by 11% with each five-year increase in age (Van Os et al., 1995). It is unclear, however, in what proportion the symptoms were associated with dementia. Community studies indicate a lower rate of between 2% and 6% of older people showing persecutory ideation, paranoia or psychotic symptoms (Christenson & Blazer, 1984; Forsell & Henderson, 1998; Henderson et al., 1998), although again, some of these people might have had dementia (Howard et al., 2000). Community prevalence estimates for schizophrenia in people over 65 years old range from 0.1% to 0.5% (Howard et al., 2000). It has been suggested that a large number of paranoid elderly people remain undiagnosed in the community either because of their social isolation or because the symptoms are not disruptive enough to be noticed (Almeida et al., 1992; Post, 1966). People with LOP have often experienced paranoid feelings for many years before they reach mental health services.

AETIOLOGY AND RISK FACTORS Several risk factors for LOP have been identified: hereditary disposition (though weaker than in schizophrenia of earlier onset); female sex; hearing and other sensory deficits and subtle cognitive dysfunction and brain abnormalities (Almeida et al., 1992, 1995b; Fuchs, 1999a; Hassett et al., 1992). Late onset psychosis shares many of the same organic attributes as earlier onset schizophrenia, suggesting that any organic factors associated with schizophrenia may also play a part in the initiation and maintenance of LOP. Alternatively, some authors have proposed that LOP is related to dementia rather than to schizophrenia. For example, in a long-term follow up study Holden (1987) reported that 40% of people with LOP had developed dementia over a 10-year period. However, when organic cerebral disorders are carefully screened out of studies, evidence of focal cerebrovascular abnormalities are not found to differ significantly compared to control groups (Symonds et al., 1997). Further, patterns of neuropsychological impairments are qualitatively and quantitatively different from those found in people with dementia (Almeida et al., 1995c; Howard et al., 2000). Many studies have found a preponderance of women over men in LOP, the ratio of females to male ranging from 3:1 to 45:2 (Almeida et al., 1995b). This difference remains even after statistical adjustments are made for the higher proportion of women in older populations (Jeste et al., 1995). In contrast, being male is a risk factor for onset during adolescence and up to age 35. A possible biological explanation for this contrast may involve the role of oestrogen production (Angermeyer & K¨uhn, 1988; Jeste et al., 1995). Alternatively, Castle & Murray (1993) have suggested that LOP has aetiological links with late onset affective disorders and that this could explain the gender discrepancy. In a controlled family study of probands with LOP, the lifetime risk of depression in first-degree relatives was significantly increased (Howard et al., 1997). However, brain abnormalities specifically associated with late onset affective disorder (Rabins et al., 1991) have not been found in studies of LOP populations (Symonds et al., 1997), and LOP generally responds well to neuroleptic medication but not to anti-depressant drugs (Roth & Kay, 1998). Roth and Kay (1998) have noted that female preponderance is evident from the age of 35, and suggest

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that the heightened female-to-male ratio in old age can be explained as a continuation of this correlation, whatever the cause. Sensory impairments, in particular hearing difficulties, are more prevalent among people with LOP than healthy controls (Almeida et al., 1995b; Castle et al., 1997), and a reduction in psychotic symptoms has been observed when hearing aids are fitted (Almeida et al., 1995b). However, the mechanisms and contribution of sensory impairments in LOP are unclear (Almeida et al., 1995b). Very few older people with hearing impairments actually develop psychotic symptoms (Corbin & Eastwood, 1986). Further, in most studies hearing loss predated the onset of psychosis by many years (Hassett, 1997). It might be that longstanding hearing impairments lead predisposed persons to social isolation, suspiciousness and a greater liability to misinterpret environmental events (Almeida et al., 1995b; Cooper & Porter, 1976).

PSYCHOSOCIAL ASPECTS To date, consideration of biographical and personality factors has only played a minor role in the search for an understanding of LOP (Fuchs, 1999a; Hassett, 1997). However, in line with vulnerability-stress models of schizophrenia (see Ciompi, 1988; Nuechterlein, 1987; Perris, 1989; Zubin & Spring, 1977) these factors may well be part of a premorbid vulnerability that manifests for the first time under the influence of additional adversities arising in old age (Fuchs, 1999a). People with LOP have frequently been described as ‘quarrelsome’, ‘cold hearted’, ‘dictatorial’ and ‘determined’ (Almeida et al., 1992; Kay & Roth, 1961). Importantly, a number of studies have shown that a significant proportion of people with LOP had premorbid personality styles characterized by schizoid (a tendency to withdraw from social contact or remain aloof) and paranoid (excessively self-referent and sensitive) traits (Fuchs, 1999b; Howard & Levy, 1993). Kay and Roth (1961) found 45% could be described as having premorbid paranoid and schizoid traits, characterized by jealousy, suspiciousness, arrogance, emotional coldness and extreme solitariness. A further 30% were described as explosive and sensitive. Similarly, Post (1966) found 40% had premorbid personality traits that he termed ‘paranoid’ in that they were ‘quarrelsome, sensitive, suspicious or hostile’. He described other patients as ‘odd, eccentric, histrionic, or pretentious’. However, for 30% of cases he concluded that premorbid personality functioning was free of significant abnormality. More recently, diagnostic classification systems for personality disorders have been applied to investigate these findings more stringently. Howard and Levy (1993) studied 25 people with late onset paranoid psychosis using the ICD-10 diagnostic criteria for personality disorder. They found that 40% fulfilled the criteria for ‘paranoid’ personality disorder and a further 24% had ‘difficulties’ in this area. They did not find any diagnosable cases of schizoid personality disorder, although 32% had ‘difficulties’ in this area. Similarly, Fuchs (1999b) applied DSMIII-R criteria to 38 people with late paraphrenia and found that 39% could be diagnosed with either ‘paranoid’ or ‘schizoid’ personality disorders. People with late onset depression, in contrast, were significantly more likely to be diagnosed with avoidant and dependent personality disorders. Fuchs (1999b) proposed a polarity of premorbid personality styles between paranoid and depressed people. If this were true, then personality factors might play a role in which illnesses people experience when they run into difficulties in later life. One criticism of these studies is that the diagnostic systems

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simply reflect the illness rather than measuring the premorbid personality trait (Howard & Levy, 1993). It has certainly been demonstrated that abnormal premorbid personality is not a universal phenomenon for all people with LOP. On balance, however, there seems to be some evidence to suggest that people who go on to develop psychosis in later life may have personality difficulties (even if not meeting diagnostic criteria for personality disorder) that begin before the appearance of their psychotic symptoms. The case for an abnormal premorbid personality is strengthened when evidence concerning past life events and relationship patterns is considered. Social isolation has been cited as a risk factor for LOP in most studies (Almeida et al., 1995b; Fuchs, 1999b; Kay & Roth, 1961). People with LOP are inclined to be unmarried or divorced (and to have had their own parents divorce before they were 14 years old), to live alone, have few or no social contacts, and have fewer children than other clinical groups and healthy older adults (Almeida et al., 1992; Fuchs, 1999b; Howard & Levy, 1993). Having fewer children remains true even when those who are unmarried are partialled out of the analysis (Fuchs, 1999b). These findings contrast with the evidence for good premorbid educational achievement and occupational adjustment (Castle et al., 1997; Fuchs, 1999b). This has led to speculation over whether the lack of social contact is due to difficult premorbid personality traits or the effect of developing psychosis, or is itself a specific trigger for psychotic symptoms. In interviews with people with late paraphrenia, Fuchs (1999b) reported that they described their marriages more as ‘expedient alliances’ than intimate relationships. They also had significantly fewer social contacts than a comparison group of people with late onset depression, and did not have anyone to confide in. Following bereavements or divorce, the LOP group had only ‘minor grief reactions’, compared to prolonged grieving among the depressed group. Instead, the LOP group tended to have qualities of ‘tenacity, selfassertion and autonomy’ and two-thirds of the women had worked for more than 20 years compared with only one-third of the depressed group who had largely kept house since they married. The picture gained was that people with LOP were more likely to remain single and childless and to support themselves than people who had late onset depression (Fuchs, 1999b). Kay et al. (1976) compared people over the age of 50 with paranoid and affective psychosis, reporting that the paranoid group had had greater difficulty in establishing and maintaining satisfactory relationships premorbidly and had been significantly less able to display sympathy or emotion. Difficult premorbid personality traits are not specific to people with LOP (Kay & Roth, 1961) and it may be the lack of positive personality traits such as warmth and ease with human relations rather than the presence of negative personality traits that is important (Howard & Levy, 1993). These data would suggest that the pattern of isolation is a long-term phenomenon for this group rather than a trigger for the onset of symptoms. Fuchs (1999b) concluded that it was likely that prevailing isolation mainly reflected a lifelong pattern of missing intimacy, a dislike of sociability and an emphasis on personal autonomy. Avoiding emotionally taxing personal relationships could postpone psychotic breakdown to old age (Roth, 1987). Therefore, the pattern of isolation could be the preferred coping mechanism of people who are constitutionally already vulnerable to psychotic breakdown. Corin and Lauzon (1992) have suggested that avoiding emotional intimacy may also be a coping strategy of younger people with psychosis. This means that the impact of any psychological intervention needs to be thought through carefully, as increasing social contact may actually prolong symptoms (Johnson, 1996).

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Early life traumas have been associated with LOP (Fuchs, 1994, 1999a; Gurian, Wexler & Baker, 1992) and in particular, discriminating-stigmatizing environments (such as illegitimate birth or having an illegitimate child, amputation and handicap) and threateningpersecutory experiences (such as expulsion from home and rape). Refugees expelled from their territories following World War Two constituted 47% of the LOP sample described by Fuchs (1994). This compared with rates of only 20% in people with late onset depression, people with dementia, and the community in general. A later study also found increased frequencies of illegitimate births, illegitimate children and handicaps and again a higher rate of expulsions (Fuchs, 1999a). Fuchs (1994, 1999a) hypothesized that the trauma of forced flight may have resulted in feelings of distrust, resentment and injustice and that stigmatizing-discriminating conditions might have fostered a reserved and suspicious attitude towards their environment, leading to a lifetime of feeling like an outsider. He postulated that the delay between trauma in early life and the onset of psychotic symptoms may be a function of the person’s coping strategies, with the changes and stresses of later life such as the ending of occupational engagement, bereavement, illness, sensory loss and dependency needs leading to a decompensation and thus to a late effect of traumatic events that occurred early in life (Fuchs, 1994, 1999a). Specifically referring to his sample of expellees, Fuchs (1994) further postulated that the lasting impression of the vulnerability of one’s own territory might relate to the ‘partition delusions’ often associated with late paraphrenia. Partition delusions are the belief that people, objects, or radiation can pass through what would normally constitute a barrier to such passage, such as walls, floors, doors and ceilings (Howard et al., 1992). Often they involve the belief that someone is operating just outside the person’s home, and is able to enter their home or force gas into their home with the express purpose of annoying or harming them. Giblin et al. (2004) found that people with LOP had higher levels of adverse early life experiences than healthy controls. In comparison to people with late onset depression, levels of adverse experiences were similar but the nature of the experiences reported was qualitatively different. The LOP group reported more discriminating/threatening experiences and more losses in early childhood, while the depressed group reported more losses in adulthood and later life, and more health-related difficulties. This and another recent UK study (McCulloch et al., 2006) reported that a much higher proportion of participants with LOP had immigrated into the UK than was the case for healthy and depressed controls. A stress-vulnerability framework strongly implies the possibility of multiple causation in the aetiology of LOP, and points to relevant factors that may be extremely important in considering how to help people with LOP. Indeed, Fuchs (1994, 1999a & b) and Roth (1987) have made this link explicit in their proposal that people with LOP are made vulnerable, maybe by personality style and life events, and cope throughout life via various mechanisms such as avoiding intimacy and working hard. When the stresses of old age ensue, such as retirement and a reduced capacity to use defences such as selective interaction (Atchley, 1991), psychotic symptoms emerge. It may be that particular age-related factors produce conflicts that create stress and threaten an already vulnerable sense of self, resulting in the emergence of symptoms (Fuchs, 1999b; Hassett, 1997). This idea can be understood within a developmental framework using, for example, Erikson’s psychosocial theory of lifespan development (Erikson, 1986; Erikson, Erikson & Kivnick, 1986). Harrop and Trower (2001) have proposed that psychosis develops in adolescence because the particular tasks of adolescence have not been negotiated. It might be that people who develop LOP have difficulty negotiating the specific developmental tasks of later adulthood and late

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life. Increased social isolation and loss of occupational role may impact on self-esteem, with a degree of rigidity in coping style affecting the ability to shift from assimilative to more accommodative processes (Brandtst¨adter & Greve, 1994; Brandtst¨adter & Renner, 1990). The onset of physical frailty, with connotations of increased dependence on others, may represent a particular challenge for this group (Atchley, 1991; Dittman-Kohli, 1990; Whitbourne & Collins, 1998). All of this, in the context of previous negative life experiences, may add up to a generally negative attitude towards ageing (Coleman et al., 1993), with implications for sense of identity (Coleman, 1996). Supporting this hypothesis, Giblin et al. (2004) found that people with LOP had significantly reduced morale with regard to ageing than healthy controls, reflecting in particular higher levels of ‘lonely-dissatisfaction’.

PSYCHOLOGICAL UNDERSTANDING AND INTERVENTION In recent years, psychologists have made important contributions to explaining the cognitive and emotional mechanisms underlying specific psychotic symptoms (e.g. Frith, 1987, 1992; Garety & Freeman, 1999; Kinderman, 1994, Kinderman & Bentall, 1996). A similar approach is now being applied to LOP. Moore et al. (2006) explored the cognitive mechanisms underlying the formation and maintenance of persecutory delusions in LOP, comparing performance on tasks assessing probabilistic reasoning, attributional style, and mentalizing ability in people with LOP who experienced persecutory delusions, people with late onset depression and age-matched controls. People with LOP did not appear to show the full range of cognitive biases that have been identified in people who developed schizophrenia in early adulthood. There were no significant differences between groups on a probabilistic reasoning task, an attributional style task and a false belief mentalizing task. However, like younger adults with persecutory delusions, the LOP group made significantly more errors than controls on a mentalizing task involving stories containing examples of first-order and second-order deception, making incorrect social inferences with regard to the actions of others where deceit was involved. In parallel with these theoretical developments, there has been a major development in CBT interventions for people with psychosis, either as direct therapies for specific symptoms, as a way of enhancing patients’ coping skills or as part of a normalising strategy (for example, Chadwick, Birchwood & Trower, 1996; Fowler, Garety & Kuipers, 1995; Kingdon & Turkington, 1994; Nelson, 1997). The early evidence for the efficacy of CBT approaches for psychosis is promising (Dickerson, 2000; Jones et al., 2000; Pilling et al., 2002). Applications of CBT to work with older people have been described more recently (Laidlaw et al., 2003). The next step will be to draw these two strands together and develop CBT approaches designed to help older people with late onset psychosis. Some preliminary explorations have been undertaken with the aim of contributing to the foundations of this endeavour. A key assumption of the cognitive-behavioural model is that people develop and maintain cognitive sets or schemata that allow them to make sense of their experiences (Beck et al., 1979). These schemas, and associated core beliefs, are thought to have their origins in childhood. Frequently encountered themes among people with psychosis include feeling vulnerable to harm or losing self-control, feeling defective, having unrelenting standards and feeling doomed to social isolation (Fowler et al., 1995). Giblin et al. (2004) used the Young Schema Questionnaire (Young, 1998) as a means of exploring the inner

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psychological world of people with late onset psychosis. The LOP group scored significantly higher than both healthy controls and people with late onset depression on the domains of ‘other-directedness’ and ‘over-vigilance and inhibition’ and significantly higher than healthy controls on the domains of ‘rejection and disconnection’ and ‘impaired autonomy and performance’. Individual schemas that were particularly strongly endorsed by the participants with LOP were emotional deprivation, social isolation/alienation, self-sacrifice, emotional inhibition and unrelenting standards/hypercriticalness. There are differing views on the extent to which therapy for people with psychosis should focus on the schema level (Haddock & Tarrier, 1998; Perris & Skagerlind, 1998), but the likely relevance of early life experience in the aetiology of LOP suggests that the schema level is an important component of the psychological formulation. Giblin et al. (2004) found that participants with LOP had high scores on a screening tool for depression, which were significantly above the level reported by healthy controls, with more people in the LOP group scoring above clinical cut-off points than was the case for the depressed controls (whose lower scores presumably reflected successful treatment or recovery). This is in contrast to some other studies (e.g. McCulloch et al., 2006), but suggests that depression may be an important component of LOP (e.g. Castle & Murray, 1993) which needs to be taken into account when developing psychological interventions. High levels of anxiety may also be present (McCulloch, 2000). This highlights the need to develop individualized formulations and individually tailored approaches to intervention for this group of people with complex needs, who often experience a great deal of distress as a result of their difficulties. In so doing, a central challenge for the clinician is to maintain a supportive and respectful attitude in order to provide continued social support even in the face of potentially alienating behaviour and responses.

REFERENCES Almeida, O., Howard, R., Frstl, H. & Levy, R. (1992) Late paraphrenia: a review. International Journal of Geriatric Psychiatry, 7, 543–8. Almeida, O., Howard, R., Levy, R. & David, A. (1995a) Psychotic states arising in late life (late paraphrenia): psychopathology and nosology. British Journal of Psychiatry, 166, 205–14. Almeida, O., Howard, R., Levy, R. & David, A. (1995b) Psychotic states arising in late life (late paraphrenia): the role of risk factors. British Journal of Psychiatry, 166, 215–28. Almeida, O., Howard, R., Levy, R. et al. (1995c) Cognitive features of psychotic states arising in late life (late paraphrenia) Psychological Medicine, 25, 685–98. Angermeyer, M. & K¨uhn, R. (1988) Gender differences in age at onset of schizophrenia. European Archives of Psychiatry and Neurological Sciences, 237, 351–64. Atchley, R.C. (1991) The influence of ageing or frailty on perceptions and expressions of the self: Theoretical and methodological issues. in The Concept and Measurement of Quality of Life in the Frail Elderly (eds J. Birren, J. Lubben, J. Rowe & D. Deutchman) . Academic Press, New York. Beck, A., Rush, A., Shaw, B. & Emery, G. (1979) Cognitive Therapy of Depression. John Wiley & Sons, Chichester. Brandtst¨adter, J. & Greve, W. (1994) The ageing self: stabilising and protective processes. Developmental Review, 14, 52–80. Brandtst¨adter, J. & Renner, G. (1990) Tenacious goal pursuit and flexible goal adjustment: explication and age-related analysis of assimilative and accommodative strategies of coping. Psychology and Ageing, 5, 58–67.

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Castle, D. & Murray, R. (1993) The epidemiology of late onset schizophrenia. Schizophrenia Bulletin, 19, 691–700. Castle, D., Wessely, S., Howard, R. & Murray, R. (1997) Schizophrenia with onset at the extremes of adult life. International Journal of Geriatric Psychiatry, 12, 712–17. Chadwick, P., Birchwood, M. & Trower, P. (1996) Cognitive Therapy for Delusions, Voices and Paranoia. John Wiley & Sons, Chichester. Christenson, R. & Blazer, D. (1984) Epidemiology of persecutory ideation in an elderly population in the community. American Journal of Psychiatry, 141, 1088–9. Christie, A. (1982) Changing patterns in mental illness in the elderly. British Journal of Psychiatry, 140, 154–9. Ciompi, L. (1988) The Psyche and Schizophrenia. Harvard University Press, Cambridge MA. Coleman, P. (1996) Identity management in later life. In Handbook of the Clinical Psychology of Ageing (ed. R.T. Woods). John Wiley & Sons, Chichester, pp. 93–113. Coleman, P. et al. (1993) Predictors of depressive symptoms and low self-esteem in a follow-up study of elderly people over ten years. International Journal of Geriatric Psychiatry, 8, 343–9. Cooper, A. & Porter, R. (1976) Visual acuity and ocular pathology in the paranoid and affective psychoses of later life. Journal of Psychosomatic Research, 20, 107–14. Corbin, S. & Eastwood, M. (1986) Sensory deficits and mental disorders of old age: causal or coincidental associations? Psychological Medicine, 16, 251–256. Corin, E. & Lauzon, G. (1992) Reconstruction of experience among schizophrenics. Psychiatry, 55, 266–78. Dickerson, F. (2000) Cognitive behavioural psychotherapy for schizophrenia: a review of the recent empirical studies. Schizophrenia Research, 43, 71–90. Dittman-Kohli, F. (1990) The construction of meaning in old age: Possibilities and constraints. Aging and Society, 10, 270–94. Erikson, E.H. (1980) Identity and the Life Cycle. Norton, London. Erikson, E.H., Erikson, J. & Kivnick, H. (1986) Vital Involvement in Old Age. Norton, London. Forsell, Y. & Henderson, S. (1998) Epidemiology of paranoid symptoms in an elderly population. British Journal of Psychiatry, 172, 429–32. Fowler, D., Garety, P. & Kuipers, E. (1995) Cognitive Behaviour Therapy for Psychosis: Theory and Practice. John Wiley & Sons, Chichester. Frith, C. (1987) The positive and negative symptoms of schizophrenia reflect impairments in the perception and initiation of action. Psychological Medicine, 17, 631–48. Frith, C. (1992) The Cognitive Neuropsychology of Schizophrenia. Lawrence Erlbaum, Hove. Fuchs, T. (1994) Uprooting and late-life psychosis. European Archives of Psychiatry and Clinical Neuroscience, 244, 126–30. Fuchs, T. (1999a) Life events in late paraphrenia and depression. Psychopathology, 32, 60–9. Fuchs, T. (1999b) Patterns of relation and premorbid personality in late paraphrenia and depression. Psychopathology, 32, 70–80. Garety, P. & Freeman, D. (1999) Cognitive approaches to delusions: A critical review of theories and evidence. British Journal of Clinical Psychology, 38, 113–54. Giblin, S., Clare, L., Livingston, G. & Howard, R. (2004) Psychosocial correlates of late onset psychosis: life experiences, cognitive schemas, and attitudes to ageing. International Journal of Geriatric Psychiatry, 19, 611–23. Gurian, B., Wexler, D. & Baker, E. (1992) Late-life paranoia: possible associations with early trauma and fertility. International Journal of Geriatric Psychiatry, 7, 277–84. Haddock, G. & Tarrier., N. (1998) Assessment and formulation in the cognitive behavioural treatment of psychosis, in Treating Complex Cases: the Cognitive Therapy Approach (eds N. Tarrier, A. Wells & G. Haddock). John Wiley & Sons, Chichester, pp 155–75. Harrop, C. & Trower, P. (2001) Why does schizophrenia develop at late adolescence? Clinical Psychology Review, 21, 241–65. Hassett, A. (1997) The case for a psychological perspective on late onset psychosis. Australian and New Zealand Journal of Psychiatry, 31, 68–75. Hassett, A., Keks, N., Jackson, H. & Copolov, D. (1992) The diagnostic validity of paraphrenia. Australian and New Zealand Journal of Psychiatry, 26, 18–29.

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Henderson, A. & Kay, D. (1997) The epidemiology of functional psychoses of late onset. European Archives of Psychiatry and Clinical Neuroscience, 247, 176–89. Henderson, A., Korten, A., Levings, C. et al. (1998) Psychotic symptoms in the elderly: a prospective study in a population sample. International Journal of Geriatric Psychiatry, 13, 484–92. Holden, N. (1987) Late paraphrenia or the paraphrenias? A descriptive study with a 10-year follow-up. British Journal of Psychiatry, 150, 635–39. Howard, R., Castle, D., O’Brien, J. et al. (1992) Permeable walls, floors, ceilings and doors. Partition delusions in late paraphrenia. International Journal of Geriatric Psychiatry, 7, 719–24. Howard, R., Graham, C., Sham, P. et al. (1997) A controlled family study of late onset non-affective psychosis (late paraphrenia) British Journal of Psychiatry, 170, 511–14. Howard, R. & Levy, R. (1992) Which factors affect treatment response in late paraphrenia? International Journal of Geriatric Psychiatry, 7, 667–72. Howard, R. & Levy, R. (1993) Personality structure in the paranoid psychoses of later life. European Psychiatry, 8, 59–66. Howard, R., Rabins, P., Seeman, M. et al. (2000) Late onset schizophrenia and very-late onsetschizophrenia-like psychosis: an international consensus. American Journal of Psychiatry, 157, 172–8. Jeste, D., Naimark, D., Halpain, M. & Lindamer, L. (1995) Strengths and limitations of research on late-life psychoses, in Emerging Issues in Mental Health and Aging (ed. M.Gatz). Washington DC: American Psychological Association. Jeste, D., Symonds, L., Harris, M. et al. (1997) Nondementia nonpraecox dementia praecox? Late onset schizophrenia. American Journal of Geriatric Psychiatry, 5, 302–17. Johnson, D.A.W. (1996) Peer review of ‘Cognitive therapy and recovery from acute psychosis’. British Journal of Psychiatry, 169, 608–9. Jones, C., Cormac, I., Mota, J. & Campbell, C. (2000) Cognitive behaviour therapy for schizophrenia (Cochrane Review) The Cochrane Library, Issue 4. Update Software, Oxford. Kay, D., Cooper, A., Garside, R. & Roth, M. (1976) The differentiation of paranoid from affective psychoses by patients’ premorbid characteristics. British Journal of Psychiatry, 129, 207–15. Kay, D. & Roth, M. (1961) Environmental and hereditary factors in the schizophrenias of old age (‘late paraphrenia’) and their bearing on the general problem of causation in schizophrenia. Journal of Mental Science, 107, 649–86. Kinderman, P. (1994) Attentional bias, persecutory delusions and the self-concept. British Journal of Medical Psychology, 67, 33–9. Kinderman, P. & Bentall, R. (1996) Self-Discrepancies and persecutory delusions: evidence for a model of paranoid ideation. Journal of Abnormal Psychology, 105, 106–13. Kingdon, D. & Turkington, D. (1994) Cognitive Behaviour Therapy of Schizophrenia. Hove: Lawrence Erlbaum. Laidlaw, K., Thompson, L.W., Dick-Siskin, L. & Gallagher-Thompson, D. (2003) Cognitivebehaviour Therapy with Older People. John Wiley & Sons, Chichester. McCulloch, Y. (2000) Beliefs, Self-Esteem and Mood in Older Adults with Late Paraphrenia. Unpublished DClinPsy thesis, University College, London. McCulloch, Y., Clare, L., Howard, R. & Peters, E. (2006) Psychological processes underlying delusional thinking in late onset psychosis: a preliminary investigation. International Journal of Geriatric Psychiatry, 21, 768–77. Moore, R., Blackwood, N., Corcoran, R. et al. (2006) Misunderstanding the intentions of others: an exploratory study of the cognitive etiology of persecutory delusions in very late onset schizophrenia-like psychosis. American Journal of Geriatric Psychiatry, 14, 410–18. Nelson, H. (1997) Cognitive Behavioural Therapy with Schizophrenia: a Practice Manual. Stanley Thornes, Cheltenham. Nuechterlein, K. (1987) Vulnerability models for schizophrenia: state of the art, in Search for the Cause of Schizophrenia (eds H. H¨afner, W. Gattaz & W. Janzarik). Berlin: Springer. Perris, C. (1989) Cognitive Therapy for Patients with Schizophrenia. New York: Cassel. Perris, C. & Skagerlind, L. (1998) An integrated, multilevel, metacognitive approach to the treatment of patients with a schizophrenic disorder or a severe personality disorder, in Cognitive Psychotherapy of Psychotic and Personality Disorders: Handbook of Theory and Practice (eds C. Perris & P. McGorry). John Wiley & Sons, Chichester, pp 197–211.

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Pilling, S., Bebbington, P., Kuipers, E., et al. (2002) Psychological treatments in schizophrenia: 1. meta-analysis of family intervention and cognitive behaviour therapy. Psychological Medicine, 32, 736–82. Post, F. (1966) Persistent Persecutory States of the Elderly. Pergamon, Oxford. Rabins, P., Pearlson, G., Ayward, E. et al. (1991) Cortical magnetic resonance imaging changes in elderly patients with major depression. American Journal of Psychiatry, 148, 617–20. Riecher-Rossler, A., Rossler, W., F¨orstl, H. & Meise, U. (1995) Late onset schizophrenia and late paraphrenia. Schizophrenia Bulletin, 21, 345–54. Roth, M. (1987) Late paraphrenics: phenomenology and aetiological factors and their bearing upon problems of the schizophrenic family of disorders, in Schizophrenia and Ageing (eds N. Miller & G. Cohen). Guilford Press, New York. Roth, M. & Kay, W. (1998) Late paraphrenia: a variant of schizophrenia manifest in late life or an organic clinical syndrome? A review of recent evidence. International Journal of Geriatric Psychiatry, 13, 775–84. Roth, M. & Morrissey, J. (1952) Problems in the diagnosis and classification of mental disorders in old age. Journal of Mental Science, 98, 66–80. Symonds, L., Olichney, J., Jernigan, T. et al. (1997) Lack of clinically significant gross structural abnormalities in MRIs of older patients with schizophrenia and related psychoses. Journal of Neuropsychiatry and Clinical Neuroscience, 9, 251–8. Van Os, J., Howard, R., Takei, N. & Murray, R. (1995) Increasing age is a risk factor for psychosis in the elderly. Social Psychiatry and Psychiatric Epidemiology, 30, 161–4. Whitbourne, S. & Collins, K. (1998) Identity processes and perceptions of physical functioning in adults: theoretical and clinical implications. Psychotherapy, 35, 519–30. Young, J.E. (1998) The Young Schema Questionnaire: Short Form. Available from http://www.schematherapy.com/id54.htm. Accessed 15 August 2007. Zubin, J. & Spring, B. (1977) Vulnerability – a new view of schizophrenia. Journal of Abnormal Psychology, 88, 103–26.

10

Dementia as a biopsychosocial condition: implications for practice and research Murna Downs Bradford Dementia Group, University of Bradford, Bradford, UK

Linda Clare University of Wales Bangor, Bangor, UK

and Elizabeth Anderson Bradford Dementia Group, University of Bradford, Bradford, UK

Dementia, in common with other chronic conditions, is increasingly viewed as a biopsychosocial condition – that is, a condition with interacting neurological and psychosocial components. In this chapter we examine these neurological and psychosocial elements and discuss the implications of adopting a biopsychosocial approach to our support and care for people with dementia and their families. The need for a broad explanatory framework in the field of health and disability was first articulated by Engel (1977). He argued that the medical model of disease, in failing to consider the social, psychological and behavioural dimensions of ill health, was not adequate to allow medicine and psychiatry to fulfil their scientific tasks and social responsibilities. Engel (1977) argued for the adoption of a biopsychosocial model in preference to a medical model. This biopsychosocial model would take into account factors relating to the person, the social context and the healthcare system. The biospychosocial model is now the accepted norm within the World Health Organisation (WHO) understanding of disease (World Health Organisation, 2002). The WHO argues for a synthesis between medical and social models whereby the disease is understood within the context of psychological factors and social systems, allowing for the operation of multidirectional and multidimensional influences in an interactive process. Recent guidelines on care for people with dementia and their families stress the need to look at both the social and medical aspects of this condition (National Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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Institute for Health and Clinical Excellence and Social Care Institute for Excellence, 2006). The complexity of the relationship between neuropathology and symptomatology underscores the need to adopt a biopsychosocial model and incorporate this into our understanding of the process of dementia. A consistent and straightforward association between symptoms of Alzheimer’s disease (AD) and biological markers has not been established. The key forms of neuropathology in AD appear in the brains of some healthy older people, whereas some people may show all the symptoms of severe AD but lack any observable pathology at post mortem (see, for example, Sevush & Leve, 1993; Snowdon, Greiner & Mortimer et al., 1997) . In relation to dementia, the need for a conceptual model that encompassed psychosocial elements along with neurological elements was articulated concurrently by Lyman (1989) in the US and Kitwood (1989) in the UK. Kitwood (1997) describes a dialectical process of dementia encompassing a dynamic interplay between neurological, psychological and social elements. Thus, while biological, psychological and social levels all play a part, it is the interaction between them that is of particular importance. The aim of this ‘alternative’ to the ‘standard’ paradigm was to develop an account of the process of dementia that bridges the neurological and psychosocial elements and addresses the issue of the relationship between mind and brain (Kitwood, 1989, 1990). This relationship between mind and brain is conceptualized as follows. Events or states experienced at the mind or psychological level are also brain events or states (Kitwood, 1989, 1997, pp. 17–18, 50–3; 67–9). These arise in a brain whose structure has been and continues to be determined by a lifelong process of development, with particular learning experiences resulting in a distinctive neural architecture and a degree of plasticity that may allow for some adjustment and compensation in the face of neuronal loss. Neurobiology and experience together influence the brain’s resilience or vulnerability in the face of dementing processes. Psychological or mind events may affect brain structure just as brain structure may affect the experiencing of these events. The manifestation of dementia in any one individual, therefore, can only be understood by considering the interplay of neurological impairment, physical health, sensory acuity, personality, biography and past experience, relationships and social resources (Kitwood, 1997). The biopsychosocial model incorporates a role for psychological, social and environmental influences thus offering the possibility of accounting for individual differences in course and progression of dementia, for manifestations of excess disability, and for instances of unexplained improvement or ‘rementing’, or, conversely, sudden rapid decline following adverse life events. The model of the relationship between mind and brain makes it possible to account for both the weak correlations between symptoms and pathology, and the heterogeneity of clinical presentation observed with similar pathology. While it is the dynamic interplay between neurological and psychosocial elements that is of greatest interest, for discussion purposes we will look at each of the elements in turn and see how far, when viewed alone, they assist in our understanding of, and care for, people with dementia and their families.

NEUROLOGICAL ELEMENTS Neurological elements of our understanding of the process of dementia include an interest in three broad areas:

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1. Understanding the neuropathology of brain diseases underlying dementia. 2. Identification of areas of preserved functioning. 3. An appreciation of the interplay between health and brain function. From a neurological perspective the progression of underlying pathology is a primary factor in accounting for the progressive increase in level of impairment over the course of dementia. Neurological changes are considered to underlie (and indeed cause) changes in cognition, communicative ability and behaviour. For example in the case of AD the hippocampus, with a crucial role in the establishment of new memories, is usually the first area of the brain to be affected. The next area of the brain to be affected is the association cortex, which supports higher order aspects of cognition including language, knowledge, praxis, and executive functions. The destruction of brain cells in these areas is viewed as the primary cause of the cognitive symptoms experienced. While accounting for progressive impairment associated with AD, a neurological perspective also provides a rationale for the retention of some abilities or functions despite the progression of pathology, although this aspect has been less frequently considered. In diseases like AD there is particular vulnerability to the structures serving cognition with relative sparing of structures involved in emotion (for example, the amygdala). While there is research evidence for some impairments in emotional processing, these are generally viewed as secondary to other cognitive difficulties (Koff et al., 1999). It has been argued that the ‘tragedy’ that we associate with the brain diseases underlying dementia betrays as much about our ‘hyper-cognitive’ society, which values reason above all other human capacities as it does the inherent ‘suffering’ caused by dementia. Such ‘hypercognitivism’ leads to neglect of the relatively more preserved capacities for emotional and relational life (Post, 2000; Sabat, 2001). Until quite recently the interaction between neurological disease, physical health and cognitive function received little attention in accounting for the process of dementia. For example, the effects of enriched environments on neuronal cell growth and maintenance may well have implications for the cognitive functioning of people with dementia (Diamond, 2001). We already know their role in alleviating behavioural symptoms (Cohen-Mansfield, 2003; Cohen-Mansfield & Werner, 1998; Kincaid & Peacock, 1999; Ziesel et al., 2003). There is now a growing interest in understanding this relationship by focusing on nutrition, exercise, stimulation and other health promotion and maintenance efforts (Heyn, Abreu & Ottenbacher, 2004). Thus one might expect that enriching environments with ‘pleasant events’ (Teri & Logsdon, 2001) might result in changing neurochemistry while interventions such as cognitive rehabilitation may possibly help to facilitate neuronal plasticity and regeneration.

Implications of Neurological Aspects for Practice The biological component to our understanding of the process of dementia has implications for how we view a person with dementia, for our interpretation of behaviour and for how we support a person. With the emphasis being placed on the disruption and ultimate destruction of the neural structures underlying cognition, rather than on brain reserve and preserved function, some philosophers and lay people alike argue that what follows is the progressive deterioration of self or personality, with an eventual complete, or largely complete, loss of the qualities that make an individual uniquely human. The perspective that argues that

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neurological disease, in affecting cognitive function, erodes the very substrate of what it means to be human assumes that the person with dementia, in losing cognitive ability, loses self and identity (Davis, 2004; Goldsmith, 1996). The person, then, becomes effectively nonhuman, with the later stages of dementia viewed as a ‘living death’ (Woods, 1989). An alternative view of how the pathology acts in progressive conditions such as AD, however, shows quite a different picture. While disruption to one’s association cortex undermines one’s knowledge of the world, it does not necessarily undermine one’s sense of self, agency or personhood (Kitwood, 1997). Again one can argue that it is not the neurological model per se that is the problem but rather its evolution within the demands of a Western ‘hypercognitive’ culture. Within the neurological tradition, behaviour that is considered problematic is explained as an inevitable symptom of neurological disease. It is attributed to disrupted cortical functioning (Cummings, 2003; McKeith & Cummings, 2005). Following this understanding there is no need to look any further than brain disease for its genesis. Such behavioural aspects are referred to as the behavioural and psychological symptoms of dementia (BPSD) (Finkel, 2003). This in turn has significant implications for attitudes to care provision. Within this model, when applied to practical situations, behaviours are often viewed as a set of symptoms to be controlled or as a series of challenges that must be managed. The emphasis is on containment and symptom control, often through pharmacological means. This has lead to documented overuse and inappropriate use of neuroleptic medication in a population least able to advocate for themselves and at greatest vulnerability to side effects (Ballard & Margallo-Lana, 2001; Margallo-Lana, Swann, O’Brien et al., 2001). A neurological perspective on the process of dementia, perhaps not surprisingly, leads to the proposal that interventions for what are viewed as cognitive and behavioural symptoms will include pharmacological treatments. Given the paucity of effective treatments in this domain (Ballard & O’Brien, 1999), this assumption has in turn led to a ‘therapeutic nihilism’ and a sense that as there are no drug treatments then ‘nothing can be done’. Until relatively recently drug treatments have tended to be used exclusively, and arguably inappropriately, for behavioural symptoms (Ballard & O’Brien, 1999). More recently, however, antidementia or cognitive-enhancing medications represent a significant breakthrough in the therapeutic armoury of old-age psychiatry (Burns, Russell & Page, 1999). These medications offer the possibility of a modest impact on rate of progression of cognitive decline for some (O’Brien & Ballard, 2001), with contested benefits in terms of quality of life. Nevertheless drug treatments offer a source of hope and for this they are valued (O’Brien & Ballard, 2001).

PSYCHOSOCIAL ELEMENTS Psychosocial aspects of living with dementia provide us with a detailed profile of cognitive functions compromised by neurological disease (Miller and Morris, 1993), shed light both on the emotional and relational aspects of dementia (Woods, 2001) and require that we consider broader socio-cultural influences on living with dementia (Downs, 2000a). Here we will consider six issues of interest: 1. The effect of cognitive impairment on sense of self. 2. The psychological needs of people with dementia (Kitwood, 1997).

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The way in which people with dementia actively cope. The meaning in behaviour (Stokes, 2000). The role of others in supporting wellbeing. The role of society.

Dementia can be understood as constituting a threat to self (Cheston & Bender, 1999; Clare, 2003a; Pearce, Clare & Pistrang, 2002). This is true of many forms of serious illness or disability but is particularly pertinent in dementia given that representations of dementia expressed by those who know their diagnosis may incorporate the sense that, at a certain point, self-awareness will be diminished or lost (Clare, 2003a; Harman & Clare, 2006; Moniz-Cook et al., 2006). Thus for the person with early stage dementia, the sense of continuity that characterizes the experience of self is challenged and the nature of future experience of self becomes uncertain. Similarly, the central role of memory in the experience of self can lead people to question what will be the nature of their experience when memory is severely affected. Alongside these issues of the changing experience of self, there is a major impact on relationships and a sense of loss of future possibilities, such as seeing one’s grandchildren grow up. At the same time that people with early stage dementia are challenged to consider these fundamental issues, they also face the immediate impact of developing memory and cognitive difficulties. In addition to the practical consequences, they may experience adverse reactions from others in response to memory lapses, which can lead to loss of confidence and withdrawal from activities, thus exacerbating the sense that one’s very identity is under threat. It is common in this situation to consider the option of ending one’s own life (Clare, 2003a). We know from qualitative research with people with HIV-1 or AIDS that sense of self is threatened both by the disintegration resulting from symptoms and loss of functioning and by the loss of community and diminished personal relationships. In the same study it was found that it was with a view to limiting this loss of self that people sought euthanasia or assisted suicide (Lavery et al., 2001). It is imperative then that we act to support people’s connection to others in order to fend off the despair and depression commonly associated with dementia. The psychological needs that we all have – to belong, to matter, to be a part of our families and communities – do not diminish with the advent of neuronal loss. Indeed some argue that these needs become heightened in the face of the uncertainty cognitive impairment brings (Kitwood, 1997; Miesen, 1992, 2004). These needs have been ignored in our predominant view of what it means to live with dementia. Thus a person with cognitive impairment is at risk of being viewed as no longer having psychological needs. Kitwood (1997), Stokes (2000) and others argue that neglect of a person’s psychological needs can lead to them using behaviour to communicate unmet need. Due to diagnostic overshadowing, however, such behaviour gets attributed to the disease process per se and labelled as ‘behavioural and psychological symptoms of dementia’ (BPSD) (Finkel, 2003). Kitwood, along with Miesen (1992, 2004), Sabat (2001) and Sabat and Harr´e (1994), recognize that people with dementia are actively seeking to make sense of and adapt to their altered experience of themselves and their world. For example, integrity-promoting care (Kihlgren et al., 1994) is based on the premise that the person with dementia is seeking to resolve the tension between making sense of one’s life, ‘integrity’, and failing to do so, ‘despair’ (Erikson & Erikson, 1987). Qualitative studies of the experience of dementia indicate that people with a diagnosis of dementia actively try to find an explanation

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for the changes they observe and adopt a range of coping strategies in response to these (Cheston, Jones & Gilliard, 2003; Clare, 2002, 2003a; Pearce, Clare & Pistrang, 2002; Van Dijkhuizen, Clare & Pearce, 2006). Coping responses appear to fall on a continuum between a ‘self-adjusting’ stance that seeks to confront the changes and their implications head on, incorporating them into an altered self-image, and a ‘self-maintaining’ stance that seeks to minimize the impact of any changes and maintain continuity with the pre-existing sense of identity (Clare, 2003a). These studies show that people with dementia do struggle to balance hope and despair and may seek to find meaning in their situation in a number of ways. These include: deciding to find out more and fight the development of dementia as best they can, through further spiritual development, through continuing valued roles in voluntary groups, through contributing to research that may help others in the future, or simply through the enjoyment of nature or music. From a psychological perspective behaviour can be considered to be fulfilling a range of different purposes. Behaviour can be viewed as instrumental, seeking some end even if that end cannot be expressed verbally or cogently. In addition, behaviour can be seen to represent the result of learning, or conditioning, so behaviours that are successful in achieving one’s aims will be repeated and those that fail to do so will be dropped. Baltes et al. (1983) and Barton et al. (1980) provided empirical evidence of the iatrogenic nature of our approach to care. They demonstrated that residents of nursing homes who acted in helpless ways received considerably more attention than those who strove to remain independent. They argued that the reinforcing effects of social attention induced a form of dependency and helplessness. Within the same behavioural tradition Teri et al. (2003) have demonstrated an association between a lack of ‘pleasant events’ and raised levels of apathy and depression in both people with dementia and their carers. Interventions to increase the number of pleasant events have been shown to decrease levels of depression. Cohen-Mansfield (2000), synthesizing findings from observational studies in nursing home settings, argues for a link between unmet need and so called challenging behaviour. A growing evidence base is now developing around the concept of ‘needs-related behaviours in dementia’ (Algase et al., 1996; Beattie et al., 2004; Cohen-Mansfield, 2000; Stokes, 2000). A further area of interest within a psychosocial perspective is the role of the other in supporting self and wellbeing. In Kitwood’s (1993) symbolic interactionist, or as he called it social psychological, view of the process of dementia he argued for the central role of interactions, relationships and the other in a person’s experience of self. In Kitwood’s view the greatest challenge for a person living with dementia is the challenge to continue to be seen and treated as a person. In his view one’s sense of self and emotional wellbeing is constructed in relationship and, as such, has as much to do with how one is treated by others as it has to with living with the consequences of brain failure per se. Sabat (2001) argues that having dementia affects the possibilities available for the social presentation of self in the context of relationships. Lyman (1998) reports that the social consequences of cognitive impairment are the most difficult for people with dementia. Where social interactions and the interpersonal context are ‘malignant’, Kitwood (1997) argues, the result is a spiral of deterioration (Barns, Sack & Shore, 1973). Where the social psychology is benign, as with Kitwood’s positive person work, the tendency is rather for neurological impairment to be mitigated by positive interactions, so that the person is able to function as effectively as possible and retain a sense of wellbeing and personhood. It is suggested that a pervasive malignant social psychology might exacerbate degenerative

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changes in the brain while a benign social psychology coupled with an enriched environment might even facilitate some regeneration (Arendt & Jones, 1992; Karlsson et al., 1988). Closely related to Kitwood’s (1997) concept of ‘malignant social psychology’ is the social model of disability, which concerns itself with the social and physical barriers that prevent people with impairments from living optimal lives. Such a way of thinking has had less attention than neurological and psychological influences (Adams & Bartlett, 2003; Downs, 2000b). This model argues that it is as much the social and built environment that disables people with impairments as the impairments themselves, and focuses on the disabling effects of attitudes, environments, practices and policies (Oliver, 1990). This view is closely related to earlier discussions about the social consequences of having dementia – the perceived loss of social value and worth. Within the framework of a social model of disability, these experiences are attributed to a society that fails to value its different citizens. Thus it is the ‘loss of citizenship’ and erosion of rights that are as problematic as the impairments themselves (Bartlett & O’Connor, 2007; Downs, 2005; Sayce, 2000). The discrimination and stigma experienced by older people with mental health problems, including dementia, has been documented and recognized as a universal concern (Graham et al., 2003). Discrimination on the grounds of age within the health and social care system has been recognized as a problem in the UK and efforts are being directed at its removal (Department of Health, 2001). Concerns about the erosion of human rights for people with dementia have been around for a long time (King’s Fund Centre, 1986). Neglect of the right to be free from harm is documented in recent research demonstrating increased risk of mortality associated with neuroleptic drug use, reminding us that ideals are in and of themselves insufficient to change practice (www.alzheimersresearch.org.uk/news/article.php?type=News&id=99, accessed 14 April 2007). Consideration of the interplay between biological and psychosocial factors points in particular to the likely value of considering dementia in terms of disability. The influential World Health Organisation model of disability (World Health Organisation, 1980) highlighted the important distinction between impairment, disability and handicap, and the potential of rehabilitation as a means of addressing the effects of impairment. The World Health Organisation (1982) has replaced the terms ‘disability’ and ‘handicap’ with ‘activity limitation’ and ‘participation restriction’ respectively, thus emphasizing more clearly the role played by social and environmental context in determining disability.

Implications of Psychosocial Aspects for Practice There are several implications for care and support that can be drawn from a psychosocial understanding of the process of dementia. These include providing an enriched environment of care that meets psychological needs, affirms personhood and supports a person’s active coping strategies and, more broadly, removing social and physical barriers to optimal quality of life. Kitwood (1997) argued that preserving personhood and maximizing wellbeing for the person with dementia are the main aims of care and can be achieved by harnessing the resources of the person’s social and interpersonal environment. The central component of intervention, therefore, is high-quality interpersonal care that meets people’s psychological needs and affirms personhood, sense of self and social value – that is, person-centred care (Brooker, 2004, 2007). As mentioned earlier, Kitwood (1997) categorizes care that enhances

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a person’s psychological adjustment as ‘positive person work’. Such approaches, he argued, enhance personhood; examples include validation where the person’s emotional reality is addressed, holding where the person’s emotional state is acknowledged and comforted, and affirmation, where people’s sense of the world is fed back to them. It was Kitwood’s view that such person-centred care not only led to the affirmation of personhood of the person with dementia but also maintained the essential humanity of the person providing care. Kitwood’s person-centred care is firmly rooted within a philosophical tradition that argues that self is not solely reliant on cognition. The implication here is that while the self or, more importantly, its coherent expression, may be under threat with neurological disease, it is the moral duty of those around the person to support and enhance its expression. As Kitwood writes, ‘personhood is bestowed . . . by others’ (Kitwood, 1997, p. 8). Thus the central goal of care within this tradition is to become attuned to, and to support, the experience and perspective of the person with dementia – until recently a neglected aspect of dementia research and care (Cotrell & Schulz, 1993). For care to be effective it must take as its starting point the person’s experience of striving to make sense of the world (Brooker, 2004). These ideas have been developed by others (Droes, 1997; Clare, 2003a; Clare & Shakespeare, 2004; Hagberg, 1997; Robinson, Clare & Evans, 2005; Keady & Nolan, 2003). Consequently, the person-centred approach has stimulated a great deal of work aimed at understanding the subjective experience of people with dementia (Brooker, 2004). It is now increasingly acknowledged that the person with dementia can express views, needs and concerns even in the later stages and that the challenge is to find effective ways of communicating in order to hear the voice of the person with dementia (Goldsmith, 1996; Killick & Allan 2001). A growing number of personal accounts are available that illustrate the subjective experience of early stage dementia (for example, Friedell, 2002; Lee, 2003; Simpson & Simpson, 1999; Snyder, 1999) and a range of studies aimed at eliciting the perspective of people with dementia provide further insights and models (Clare, 2002, 2003a; Harris, 2002; Keady & Nolan, 1995a,b; Killick & Allan, 2001; Perrin, 1997; Phinney, 2002; Sabat, 2001). Cognitive rehabilitation is a good example of an intervention which supports the person’s own coping strategies (Clare, 2003b; Clare et al., 2003; Clare, 2007; Clare & Woods, 2001). Cognitive rehabilitation involves exploring areas of functioning that are relevant and important to the individual, and in which the impact of cognitive changes is evident, in order to identify realistic goals, which are then tackled with the assistance of the rehabilitation therapist, who suggests suitable methods and techniques consistent with the person’s preferred coping style. Family members, carers or other supporters are involved in the process wherever possible. Another example is self-maintenance therapy, which focuses directly on the need to support and strengthen sense of self (Romero & Wenz, 2001). For a fuller discussion of interventions for people with dementia, see Chapter 31, this volume. Clinical strategies with respect to dementia should be informed by the perspective of the person with dementia (Cohen & Eisdorfer, 1986; Cotrell & Schulz, 1993) as well as the family carer. If the person with dementia is empowered to contribute to the process of service development, he or she can then be seen as a partner in the endeavour of understanding and caring (Adams & Clarke, 1999; Goldsmith, 1996). This presents some challenges, but is essential for the provision of good quality support and care (Clare & Cox, 2003). It enhances the focus on inclusion and on maintaining identity and individual rights. The

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implications of this set of values for the delivery of clinical services are to highlight the need for a comprehensive, integrated and individually-tailored approach (Department of Health, 2001) that views the person in context and aims to work collaboratively in order to involve and empower the person and family, at the same time acknowledging and addressing the need for wider societal change (Cox, Anderson, Dick & Elgar, 1998; Post & Whitehouse, 1995). Cognizant of the social and cultural factors that disenfranchise people with dementia and exacerbate their experience of living with dementia, we have a moral responsibility to do something about them. Efforts are now being made to combat the stigma and discrimination universally experienced by people with dementia and their families (Graham et al., 2003). In addition to a concern with ageism, an overriding contextual factor within the UK health and social policy environment, is the growing emphasis on user and carer participation in service development and evaluation. Although meeting with obstacles in the US (Beard, 2004), there is now a climate where the person living with impairment and his/her carer are recognized as having unique expertise, something recognized as missing more than 10 years ago (Cotrell & Schulz, 1993). In addition, people with dementia are becoming politicized and political forces in their own right (see for example, www.dasni.org), demanding that they be treated as citizens regardless of their diagnosis or impairments (Dwyer, 2004; Sayce, 2000).

IMPLICATIONS FOR PRACTICE OF VIEWING DEMENTIA AS A BIOPSYCHOSOCIAL CONDITION The key implication of a biopsychosocial model is that there are many aspects of a person’s life that are amenable to change and change in these areas can affect well-being and quality of life (see also Chapter 24, this volume). These include neurological, psychological and social aspects. Adopting a biopsychosocial approach to our understanding and care of people with dementia compels us to ensure all possible influences on a person’s quality of life are addressed. In turn this requires multidisciplinary and multiprofessional working. Such an approach is enshrined in government policy documents (for example, in the UK, Department of Health, 2001) but the reality of such working presents academics and professionals alike with several challenges. Amongst these is the need to not only learn each other’s language and concepts but, as importantly, to respect and consider them. This in turn has implications for the range of evidence we need in order to ensure best practice and supporting policies. We need the full range of evidence, from patients as experts to professional expertise to in depth qualitative studies to randomized controlled designs. Evidence-based medicine and care needs to include narrative-based medicine (Greenhalgh & Hurwitz, 1999) and care – where patients’ stories are given as much attention as results of randomized controlled trails. A biopsychosocial approach to conceptualizing the process of dementia and, by inference, the implications for care leaves us feeling optimistic. It maximizes the potency of interventions and holds open the possibility that psychosocial interventions may affect brain structure and function. Viewing dementia as a biopsychosocial condition, as a dynamic interplay between neurology, health, psychology and social circumstances, also suggests the need to maximize physical and mental health for people with dementia. Maximum cognitive functioning and

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wellbeing requires optimal physical health. To a large degree people with dementia have been denied these efforts at health promotion and maintenance. Indeed our custodial culture of care has tended to result in enforced immobility leading to excess mental and physical disability. For example, concerns have been raised about levels of hydration and nutrition in long term care (for example, Amella, 2004). The under use of analgesics with people with dementia has been amply documented (see Cook et al., 1999 for a review). The neurological model could, however, have much more far-reaching and constructive implications for both prevention and intervention. Epidemiological studies have suggested that dementia may represent, in effect, one end of a continuum of functioning in the ageing population (Lishman, 1994). If there is indeed a continuous distribution and people with a diagnosis of AD represent the upper tail of the distribution then efforts could be made to shift the entire population distribution in a favourable direction (Brayne, 1994; Khaw, 1994) in an attempt at primary prevention. Although the possibility of a preventive approach opens exciting possibilities, it remains unclear how this might operate in practice, as knowledge of risk factors and protective factors remains limited. Nevertheless, what is known about protective factors suggests that lifestyle issues and psychosocial context are relevant (Fratiglioni et al., 2004; Orrell & Sahakian, 1995) and need to be considered alongside basic neurobiology. Little can currently be done to address the neurological disorder in dementia per se, continued effort directed at understanding basic neurological mechanisms may help to indicate new directions for prevention and intervention. In contrast, there is good evidence to indicate that it is currently possible to do a considerable amount to address the psychological, social and environmental factors that compromise quality of life for people with dementia. Therefore, an integrated biopsychosocial approach offers people with dementia and their families the greatest opportunity for a good life with dementia.

ACKNOWLEDGEMENTS Thanks to Dr Ruth Bartlett for advice given on an earlier draft of this chapter.

REFERENCES Adams, T. & Bartlett, R. (2003) Constructing dementia, in Dementia Care (eds T. Adams & J. Manthorpe). Arnold, London. Adams, T. & Clarke, C. (1999) Dementia Care: Developing Partnerships in Practice. Balliere Tindall, London. Algase, D.L., Beck, C., Kolanowski, A. et al. (1996) Needs-driven dementia-compromised behavior: an alternative view of disruptive behavior. American Journal of Alzheimer’s Disease, 11(10), 12–19. Amella, E.J. (2004) Feeding and hydration issues for older adults with dementia. Nursing Clinics of North America, 39(3), 607–23. Arendt, T. & Jones, G. (1992) Clinicopathologic correlations and the brain-behaviour relationship in Alzheimer’s disease, in Care-giving in Dementia: Research and Applications (eds G.M.M. Jones & B.M.L. Miesen). Tavistock/Routledge, London. Ballard, C. & Margallo-Lana, M.L. (2001) The relationship between anti-psychotic treatment and quality of life for patients with dementia living in residential and nursing home care facilities. Journal of Clinical Psychiatry, 65(11), 23–8.

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Ballard, C. & O’Brien, J. (1999) Treating behavioural and psychological signs in Alzheimer’s disease: the evidence for current pharmacological treatment is not strong. British Medical Journal, 319, 138–9. Baltes, M.M., Honn, S., Barton, E.M. et al. (1983) On the social ecology of dependence and independence in elderly nurse home residents: a replication and extension. Journal of Gerontology, 38(5), 556–64. Barns, E.K., Sack, A. & Shore, H. (1973) Guidelines to treatment approaches: modalities and methods for use with the aged. The Gerontologist, Winter, 513–27. Bartlett, R. & O’Connor, D. (2007) From personhood to citizenship: broadening the lens for dementia practice and research. Journal of Ageing Studies, 21, 107–18. Barton, E.M., Baltes, M.M., Orzech, M.J. (1980) Etiology of dependence in older nursing home residents during morning care: the role of staff behaviour. Journal of Personality and Social Psychology, 38(3), 423–31. Beard, R. (2004) Advocating voice: organisational, historical and social milieux of the Alzheimer’s disease movement, Sociology of Health and Illness, 26(6), 797–819. Beattie, E., Algase, D. & Song, J. (2004) Behavioural symptoms of dementia: their measurement and intervention. Aging & Mental Health, 8, 109–16. Bird, M. (2001) Psychosocial management of behaviour problems in dementia, in Dementia, 2nd edn (eds J. O’Brien, D. Ames & A. Burns). Arnold, London. Brayne, C. (1994) How common are cognitive impairment and dementia? An epidemiological viewpoint, in Dementia and Normal Aging (eds F.A. Huppert, C. Brayne & D.W. O’Connor) Cambridge University Press, Cambridge. Brooker, D. (2004) What is person-centred care in dementia? Reviews in Clinical Gerontology, 13, 215–22. Brooker, D. (2007) Person-centred Dementia Care: Making Services Better. Jessica Kingsley, London. Burns, A., Russell E. & Page, S. (1999) New drugs for Alzheimer’s disease. British Journal of Psychiatry, 174, 476–9. Cheston, R. & Bender, M. (1999) Brains, minds and selves: changing conceptions of the losses involved in dementia. British Journal of Medical Psychology, 72(2), 203–16. Cheston, R., Jones, K. & Gilliard, J. (2003) Group psychotherapy and people with dementia. Ageing and Mental Health, 7(6), 452–61. Clare, L. (2002) We’ll fight it as long as we can: coping with the onset of Alzheimer’s disease. Ageing and Mental Health, 6, 139–48. Clare, L. (2003a) Managing threats to self: awareness in early-stage Alzheimer’s disease. Social Science and Medicine, 57, 1017–102. Clare, L. (2003b) Rehabilitation for people with dementia, in Neuropsychological Rehabilitation: Theory and Practice (ed. B.A. Wilson). Swets & Zeitlinger, Amsterdam, pp. 197–215. Clare, L. (2007) Neuropsychological Rehabilitation and People with Dementia. Psychology Press, Hove. Clare, L., Baddeley, A., Moniz-Cook, E.D. & Woods, R.T. (2003) A quiet revolution: advances in the understanding of dementia. The Psychologist, 16, 250–4. Clare, L. & Cox, S.M. (2003) Improving service approaches and outcomes for people with complex needs through consultation and involvement. Disability and Society, 18, 935–53. Clare, L. & Shakespeare, P. (2004) Negotiating the impact of forgetting: dimensions of resistance in task-oriented conversations between people with early-stage dementia and their partners. Dementia, 3, 211–32. Clare, L. & Woods, R.T. (eds) (2001) Cognitive Rehabilitation in Dementia. Psychology Press, Hove. Cohen, D. & Eisdorfer, C. (1986) The Loss of Self: a Family Resource for the Care of Alzheimer’s Disease and Related Disorders. W.W. Norton, New York. Cohen-Mansfield, J. (2000) Approach to the Management of Disruptive Behaviors, in Interventions in Dementia Care. Toward Improving Quality of Life (eds M. Powell Lawton & R. Rubinstein). Springer, New York. Cohen-Mansfield, J. (2003) Non pharmacological interventions for psychotic symptoms in dementia. Journal of Geriatric Psychiatry Neurology, 16(4), 219–24. Cohen-Mansfield, J. & Werner, P. (1998) The effects of an enhanced environment on nursing home residents who pace. Gerontologist, 38(2), 199–208.

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Cook, A., Niven, K. & Downs, M. (1999) Assessing pain for people with dementia. Internationa Journal of Geriatric Psychiatry, 14, 421–5. Cotrell, V. & Schulz, R. (1993) The perspective of the patient with Alzheimer’s disease: a neglected dimension of dementia research. The Gerontologist, 33, 205–11. Cox, S., Anderson, I., Dick, S. & Elgar, J. (1998) The Person, the Community and Dementia. Dementia Services Development Centre, University of Stirling, Stirling. Cummings J.L. (2003) Toward a molecular neuropsychiatry of neurodegenerative diseases. Annals of Neurology, 54(2), 147–54. Davis, H.J. (2004) Dementia: sociological and philosophical constructions. Social Science and Medicine, 58(2), 369–78. Department of Health (2001) National Service Framework for Older People. Department of Health. London. Available at: www.doh.gov.uk/nsf. Diamond M.C. (2001) Enrichment, response of the brain, in Encyclopaedia of Neuroscience, 3rd edn, (ed. G. Adelman). Elsevier Science, Amsterdam. Downs, M. (2000a) Dementia in a socio-cultural context: an idea whose time has come. Ageing and Society, 20, 369–75. Downs, M. (2000b) Dementia as disability: implications for practice, in Dementia – Topics for the Millennium and Beyond (ed. S. Benson). Hawker Publications, London. Downs, M. (2005) Promoting a Rights-based Approach Using Person-centred Care. Paper presented at the Alzheimer Europe annual conference in Killarney, Ireland, June. Droes, R.M. (1997) Psychomotor group therapy for demented patients in the nursing home, in Caregiving in Dementia: Research and Applications, Vol. 2 (eds B.M.L. Miesen & G.M.M. Jones). Routledge, London. Dwyer, P. (2004) Disabled citizens? In Understanding Social Citizenship. The Policy Press, Bristol. Engel, G.L. (1977) The need for a new medical model: a challenge for biomedicine. Science, 196, 129–36. Erikson, E.H. & Erikson J.M. (1987) The Life Cycle Completed. W.W. Norton, New York. Feil, N. (1982) V/F Validation Therapy: The Feil Method, 1st edn. Feil Productions, Cleveland. Finkel, S.I. (2003) Behavioural and psychologic symptoms of dementia. Clinical and Geriatric Medicine, 19(4), 799–824. Fratiglioni, L., Paillard-Borg, S. & Winblad, B. (2004) An active and socially integrated lifestyle in late life might protect against dementia. Lancet Neurology, 3(6), 343–53. Friedell, M. (2002) Awareness: a personal memoir on the changing quality of life in Alzheimer’s. Dementia, 1, 359–66. Goldsmith, M. (1996) Hearing the Voice of People with Dementia: Opportunities and Obstacles. Jessica Kingsley, London. Graham, N., Lindesay, J., Katona, C. et al. (2003) Reducing stigma and discrimination against older people with mental disorders: a technical consensus statement. International Journal of Geriatric Psychiatry, 18, 670–8. Greenhalgh, T. & Hurwitz, B. (1999) Narrative based medicine: why study narrative? British Medical Journal, 318, 48–50. Hagberg, B. (1997) The dementias in a psychodynamic perspective, in Care-giving in Dementia: Research and Applications, Vol. 2 (eds B.M.L. Miesen & G.M.M. Jones). Routledge, London. Harman, G. & Clare, L. (2006) Illness representations and lived experience in early-stage dementia. Qualitative Health Research, 16, 484–502. Harris, P.B. (ed.) (2002) Pathways to the Person: The Subjective Experience of Alzheimer’s Disease. Johns Hopkins University Press, Baltimore. Heyn, P., Abreu, B.C. & Ottenbacher, K.J. (2004) The effects of exercise training on elderly persons with cognitive impairment and dementia: a meta analysis. Archives of Physical and Medical Rehabilitation, 85(10), 1694–704. Karlsson, I., Brane, G., Melin, E. et al. (1988) Effects of environmental stimulation on biochemical and psychological variables in dementia. Acta Psychiatrica Scandinavica, 77, 207–13. Keady, J. & Nolan, M. (1995a) IMMEL 2: working to augment coping responses in early dementia. British Journal of Nursing, 4, 377–80. Keady, J. & Nolan, M. (1995b) IMMEL: assessing coping responses in the early stages of dementia. British Journal of Nursing, 4, 309–14.

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Keady, J. & Nolan, M. (2003) The dynamics of dementia: working together, working separately, or working alone? In Partnerships in Family Care (eds M. Nolan, U. Lundh, G. Grant & J. Keady). Open University Press, Buckingham. Khaw, K.T. (1994) Public health implications of a continuum model of dementia, in Dementia and Normal Ageing (eds F.A. Huppert, C. Brayne & D.W. O’Connor). Cambridge University Press, Cambridge. Kihlgren, M., Hallgren, A., Norberg, A. & Karlsson, I. (1994) Integrity promoting care of dementia patients: patterns of interaction during morning care. International Journal of Ageing and Human Development, 39(4), 303–19. Killick, J. & Allan, K. (2001) Communication and the Care of People with Dementia. Open University Press, Buckingham. Kincaid, C. & Peacock, J.R. (1999) The effect of a wall mural on decreasing four types of door-testing behaviours. Journal of Applied Gerontology, 22(1), 76–88. King’s Fund Centre (1986) Living Well into Old Age: Applying Principles of Good Practice to Services for People with Dementia, Kings Fund Centre, London. Kitwood, T. (1989) Brain, mind and dementia: with particular reference to Alzheimer’s disease. Ageing and Society, 9, 1–15. Kitwood, T. (1990) The dialectics of dementia: with particular reference to Alzheimer’s disease. Ageing and Society, 10, 177–96. Kitwood, T. (1993) Towards a theory of dementia care: the interpersonal process. Ageing and Society, 13, 51–67. Kitwood, T. (1997) Dementia Reconsidered: the Person Comes First. Open University Press, Buckingham. Koff, E., Zaitchik, D., Montepare, J. & Albert, M.S. (1999) Emotion processing in the visual and auditory domains by patients with Alzheimer’s disease. Journal of the Internationa Neuropsychological Society, 5(1), 32–40. Lavery, J.V., Boyle, J., Dickens, B.M. et al. (2001) Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: a qualitative study. Lancet, 358(9279), 362–7. Lawton, M.P. & Rubinstein, R.L. (2000) Interventions in Dementia Care: Towards Improving Quality of Life. Springer, New York. Lee, J. (2003) Just Love Me: My Life Turned Upside-Down by Alzheimer’s. Purdue University Press, West Lafayette IN. Lishman, W.A. (1994) The history of research into dementia and its relationship to current concepts, in Dementia and Normal Aging (eds F.A. Huppert, C. Brayne & D.W. O’Connor). Cambridge University Press, Cambridge. Lyman, K. (1989) Bringing the social back in: a critique of the biomedicalization of dementia. Gerontologist, 29(5), 597–605. Lyman, K. (1998) Living with Alzheimer’s disease: the creation of meaning among persons with dementia. Journal of Clinical Ethics, 9(1), 49–57. Margallo-Lana, M., Swann, A., O’Brien J. et al. (2001) Prevalence and pharmacological management of behavioural and psychological symptoms amongst dementia sufferers living in care environments. International Journal of Geriatric Psychiatry, 16(1), 39–44. McGowin, D.F. (1994) Living in the Labyrinth: a Personal Journey through the Maze of Alzheimer’s. Mainsail Press, Cambridge. McKeith, I. & Cummings, J. (2005) Behavioural changes and psychological symptoms in dementia disorders. Lancet Neurology, 4(11), 735–42. Miesen, B.M.L. (1992) Attachment theory and dementia, in Care-giving in Dementia: Research and Applications, vol. 1. (eds G.M.M. Jones & B.M.L. Miesen). London/New York: Tavistock/Routledge. Miesen, B.M.L. (2004) Towards a psychology of dementia care; awareness and intangible loss, in Care-giving in Dementia; Research and Applications, vol 3 (eds G.M.M. Jones & B.M.L. Miesen). Brunner-Routledge, Hove. Miller, E. & Morris, R. (1993) The Psychology of Dementia. John Wiley & Sons, Chichester. Moniz-Cook, E. Manthorpe, J., Carr, I. et al. (2006) Facing the future: a qualitative study of older people referred to a memory clinic prior to assessment and diagnosis. Dementia, 8(5), 375– 95.

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National Institute for Health and Clinical Excellence and Social Care Institute for Excellence (2006) Dementia; Supporting People with Dementia and their Carers in Health and Social Care. Clinical Guideline CG42. NICE/SCIE, London. Nelson, R. (2005) Exercise could prevent cerebral changes associated with AD. Lancet Neurology, 4(5), 275. O’Brien, J. & Ballard, C. (2001) Drugs for Alzheimer’s disease. British Medical Journal, 323, 123–4. Oliver, M. (1990) The Politics of Disablement. Macmillan, Basingstoke. Orrell, M.W. & Sahakian, B. (1995) Education and dementia: research evidence supports the concept ‘use it or lose it’. British Medical Journal, 310, 951–2. Pearce, A., Clare, L. & Pistrang, N. (2002) Managing sense of self: coping in the early stages of Alzheimer’s disease. Dementia, 1, 173–92. Perrin, T. (1997) The Positive Response Schedule for Severe Dementia. Aging & Mental Health, 1(2), 184–91. Phinney, A. (2002) Fluctuating awareness and the breakdown of the illness narrative in dementia. Dementia, 1, 329–44. Post, S.G. (2000) The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying. Johns Hopkins University Press, Baltimore. Post, S.G. & Whitehouse, P.J. (1995) Fairhill guidelines on ethics and the care of people with Alzheimer’s disease. Journal of the American Geriatrics Society, 43(12), 1423–9. Pratt, R. & Wilkinson, H. (2003) A psychosocial model of understanding the experience of receiving a diagnosis of dementia. Dementia, 2, 181–99. Reifler, B.V. & Larson, E. (1990) Excess disability in dementia of the Alzheimer’s type. In Alzheimer’s Disease Treatment and Family Stress (eds E. Light & B.D. Lebowitz). Hemisphere, New York. Robinson, L., Clare, L. & Evans, K. (2005) Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging and Mental Health, 9, 337–47. Romero, B. & Wenz, M. (2001) Self-maintenance therapy in Alzheimer’s disease. Neuropsychological Rehabilitation, 11, 333–55. Sabat, S. (1994) Excess disability and malignant social psychology: a case study of Alzheimer’s disease. Journal of Community and Applied Social Psychology, 4, 157–66. Sabat, S. (2001) The Experience of Alzheimer’s Disease: Life Through a Tangled Veil. Blackwell, Oxford. Sabat, S. & Harr´e, R. (1994) The Alzheimer’s disease sufferer as a semiotic being. Philosophy, Psychiatry, Psychology, 1, 145–60. Sayce, L (2000) From Psychiatric Patient to Citizen: Overcoming Discrimination and Exclusion. Macmillan, London. Sevush, S. & Leve, N. (1993) Denial of memory deficit in Alzheimer’s disease. American Journal of Psychiatry, 150, 748–51. Simpson, R. & Simpson, A. (1999) Through the Wilderness of Alzheimer’s: A Guide in Two Voices. Augsburg, Minneapolis MN. Snowdon D.A., Greiner L.H., Mortimer J.A. et al. (1997) Brain infarction and the clinical expression of Alzheimer disease. The Nun Study. JAMA, 277, 813–17. Snyder, L. (1999) Speaking our Minds: Personal Reflections from Individuals with Alzheimer’s. W H Freeman & Company, New York. Stokes, G. (2000) Challenging Behaviour in Dementia: A Person-centred Approach. Speechmark, Bicester. Teresi, J.A. Holmes, D. & Ory, M.G. (2000) The therapeutic design of environments for people with dementia: further reflections and recent findings from the National Institute on Aging collaborative studies of dementia special care units. Gerontologist, 40(4), 417–21. Teri, L., Gibbons, L.E., McCurry, S.M. et al. (2003) Exercise plus behavioural management in patients with Alzheimer disease: a randomized controlled trial. Journal of the American Medical Association, 290(15), 2015–22. Teri, L. & Logsdon, R.G. (1991) Identifying pleasant activities for Alzheimer’s patients: The Pleasant Events Schedule – AD. Gerontologist, 31, 124–7. Van Dijkhuizen, M., Clare, L. & Pearce, A. (2006) Striving for connection: appraisal and coping among women with early-stage Alzheimer’s disease.Dementia, 5, 73–94. Woods, R.T. (1989) Alzheimer’s Disease: Coping with a Living Death. Souvenir Press, London.

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Woods, R.T. (2001) Discovering the person with Alzheimer’s disease: cognitive, emotional and behavioural aspects. Aging and Mental Health, 5, 7–16. World Health Organisation (1980) International Classification of Impairments, Disabilities, and Handicaps. World Health Organisation, Geneva. World Health Organisation (1998) International Classification of Impairments, Disabilities and Handicaps, 2nd edn. World Health Organisation, Geneva. World Health Organisation (2002) Towards a Common Language for Functioning, Disability and Health. World Health Organisation, Geneva. Ziesel, J., Silverstein , N.M., Hyde, J. et al. (2003) Environmental correlates to behavioural outcomes in Alzheimer’s Special Care Units. Gerontologist, 43(5), 697–711.

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The neuropsychology of dementia: Alzheimer’s disease and other neurodegenerative disorders Robin G. Morris Institute of Psychiatry, London, UK

The term ‘dementia’ refers to an acquired generalized decline in neuropsychological function, often with the notion that the decline is progressive (see also Chapter 10, this volume). There are many causes of dementia (Burns & Levy, 1994) and it is not within the scope of this chapter to consider all of these. Instead, the chapter focuses on the main neurodegenerative causes and also includes neurological conditions that may result in dementia and are associated with multiple neuropsychological impairments. The chapter does not consider dementia associated with stroke or small vessel disease but this is dealt with in Chapter 13 of this volume. Neurodegeneration is the most common cause of neuropsychological impairment in adults and, within this, Alzheimer’s disease (AD) is the prime example. Hence this particular disorder is dwelt on in more detail, reflecting the burgeoning research into this illness (Morris & Becker, 2004). Other neurodegenerative dementias that are primarily cortical in nature are covered, and these include the frontotemporal dementias, diffuse Lewy body disease and motor neurone disease, otherwise known as amyotrophic lateral sclerosis (ALS). Other aetiologies that can be considered as primarily subcortical or resulting in extrapyramidal motor disorder include Parkinson’s disease (see Chapter 12, this volume), progressive supranuclear palsy, corticobasal degeneration, and Huntington’s disease. Descriptions of the different neuropsychological disorders and profiles of impairment form the bulk of the chapter and these can inform the choice of neuropsychological procedures when investigating a person with dementia. Neuropsychological assessment and profiling is discussed further in Chapter 22, this volume, and the neuropsychological tests mentioned in this chapter can mostly be found either in either Lezak’s textbook Neuropsychological Assessment (Lezak et al., 2004) or the Compendium of Neuropsychological tests (Strauss et al., 2006).

Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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A neuropsychological assessment of someone with dementia may take the form of a routine test battery. Nevertheless, when going beyond basic screening instruments it is necessary to develop some understanding of the characteristic neuropsychological features of different types of dementia. Standard psychometric instruments may not match the detailed cognitive neuropsychological analysis of deficit but having the necessary knowledge of the pattern of impairments can provide the basis for further exploration of individual patients and also for improving approaches to management and rehabilitation (Gracey & Morris, 2004; Morris & McKiernan, 1994; Morris, Worsley & Matthews, 2000). Additionally, different types of dementias have characteristic neuropsychological impairments, so understanding these can aid in diagnosis as well as help in tailoring particular approaches to individual patients.

ALZHEIMER’S DISEASE The most common neurodegenerative disorder is Alzheimer’s disease (AD). Despite being relatively well characterized in terms neuropathological changes, the aetiology is still unknown. Accurate diagnosis is difficult to achieve and this is because there are no in vivo markers, with the need for post mortem examination as an imperfect ‘gold standard.’ Several sets of criteria have therefore been developed to diagnose AD, including the National Institute of Neurological and Communicative Disorder and Stroke/ Alzheimer’s Disease and Related Disorders Association (NINCDS-ADRDA; McKahnn et al., 1984), an updated version of the American Psychiatric Association DSM-IV criteria (Feldman and Kertesz, 2001) and the ICD-10 criteria (WHO, 1992). The NINCDS-ADRDA criteria recognize the uncertainty of diagnosis by distinguishing between ‘probable’ and ‘possible’ AD, the former describing patients where other causes have been excluded, whereas the latter encompasses clinical evidence of other contributing aetiologies. Additionally, AD appears to overlap with cerebrovascular disease (CVD), the overlap producing indistinct boundaries between the two concepts. Furthermore, AD can present with considerable heterogeneity, for example, in relation to the degree of left or right hemisphere involvement, or extent of early memory impairment. These factors have to be considered when exploring the neuropsychological characteristics and establishing a specific profile of impairment. Nevertheless, the neurobiological changes in AD do appear to fall into a specific pattern that provides the basis for explaining the neuropsychological deficits (Morris, 2004). There is widespread cerebral atrophy, particularly affecting the parietal and temporal lobe regions, with frontal lobe involvement following later on. The medial temporal lobe structures, such as the hippocampus and the parahippocampal gyrus, are particularly affected as indicated by the early buildup of neuropathological markers such as senile plaques (SP) and neurofibrillary tangles (NFT). The combination of these changes produce what can be considered a ‘temporal parietal syndrome’ involving early language and visuospatial impairment, with early memory disorder, relating to the temporal lobe memory structures. Additional key loss of neurotransmitter functions have been documented, including cholinergic, adrenergic, dopaminergic, serotenergic and glutaminergic loss (see Curran, Kopelman & Rusted, 2004, for an extensive review).

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Prodromal or Preclinical Features In recent years there has been a growing interest in the preclinical phase of AD, partly because of the future potential for very early neurobiological treatments, particularly if these can halt the neurodegenerative changes. Hence, an approach has been to identify the preclinical features through following up samples of people who do not have dementia and exploring the preclinical characteristics of those who develop dementia. One of the most consistent findings is that long-term episodic memory (see below for a definition) is impaired. This is reflected in basic cognitive assessment procedures such as the Mini-Mental State Examination, which shows differences in people who do or do not develop AD (for example, Small et al., 2000). Additionally, deficits have been observed for verbal material (Tierney et al., 1996) and on nonverbal tests of memory (Small et al., 1997). There is some indication that memory impairment is accentuated in conditions where the memory task provides less cueing in terms of retrieval of information, or what has been termed ‘cognitive support’ – in other words how much the task procedures aid retrieval. For example, Howieson et al. (1997) found recognition memory relatively preserved but significant differences in recall. B¨ackman and Small (1998) explored this issue directly by varying the rate of presentation of words, their organizability and whether recall was cued. They found that an identified preclinical group were able to benefit from more ‘cognitive support’ in this fashion, despite overall worse performance, but this effect dissipated with the onset of dementia. Other functions have been investigated and these suggest impairment is more widespread than memory. For example, a study by Albert et al. (2001) showed that executive functioning, as measured by tests such as the Stroop, Trail Making and Digit Span backwards, discriminated those who developed AD on follow-up. Deficits in psychomotor speed, perceptual speed and visuospatial reasoning have also been found (Masur et al., 1994; Howieson et al., 1997). An issue is the length of time prior to the onset of dementia. Although many studies have focused on relatively short periods of follow up, for example three years (see, for example, Small et al., 1997), there are some studies that have explored much longer periods. This includes studies that have followed up people for 20 or even 50 years (Snowden et al., 1996; Whalley et al., 2000). Such studies suggest poor cognitive abilities in those people who go on to develop dementia. There are indications, when exploring a less lengthy period, that such differences remain relatively stable until several years before diagnosis (Chen et al., 2001; Small et al., 2000, 2004).

Neuropsychological Characteristics Episodic memory In AD, long-term memory disturbance is noted to be one of the earliest features as patients become initially forgetful and unable to retain new information as efficiently as before. Long-term memory loss follows a relentless decline, with eventual spatial and temporal disorientation and memory impairment as substantial as that found in cases of severe pure

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amnesia. Nevertheless, memory disorder is relatively nonspecific as a neuropsychological feature; hence caution should be used in terms of inferences concerning diagnosis. In some respects, AD can be thought of as an amnesic syndrome (or impairment in episodic memory with the addition of more widespread neuropsychological features). Episodic memory is affected by neurodegeneration of core memory structures but it is also true that impairment in these other functions will impact on memory function, for example, verbal and semantic processing deficits affecting the encoding and retrieval of memories. The key neuronal circuits implicated in AD are the mesial temporal lobe regions, including the hippocampus and surrounding entorhinal, parahippocampal and perirhinal cortices (Zola & Squire, 2000). These regions are arranged such that information from association areas of the neocortex connects up with the perirhinal and parahippocampal regions. In turn, information is channelled by the entorhinal cortex to the hippocampus. It is known that selective damage to these structures impairs episodic long-term memory (Broadbent et al., 2002), although the relative importance of different mesiotemporal lobe structures is still a matter of debate (Holdstock et al., 2002). In AD, there is evidence for early damage to the mesiotemporal lobe and this has been linked directly with memory dysfunction. Damage to the entorhinal cortex is reflected in the early build-up of neurofibrillary tangles (NFT) in this region as indicated by the demonstrated staging of neurofibrillary neurodegeneration, which shows the region to be the most affected (Braak & Braak, 1991, 1996; Braak et al., 1998). In addition, a hierarchical progression of build up of NFT has been identified, with damage to the entorhinal cortex, and then the CA1 field of the hippocampus, the amygdala and the sensory cortices (Arriagada et al. 1992; Braak & Braak, 1996). Additionally, there appears to be an association in AD between parahippocampal (a structure containing the entorhinal cortex) hyperphosphorylated tau pathology and memory disorder, but not other cognitive impairments (e.g. Mitchell et al., 2002). Additionally, in AD the build-up of neuritic plaques (NP) occurs early on in the hippocampus, with the early spread of amyloid into this structure, and the perforant pathway being decorated by deposits as this neurobiological abnormality moves through the subiculum to reach the CA1 field of the hippocampus (Braak & Braak, 1996). There are also amyloid deposits seen early in the entorhinal and perirhinal regions (Braak & Braak, 1996). The neuropathological changes are reflected in morphological differences. For example, alterations in hippocampal volume discriminate patients from controls in the early stages (Jack et al., 1997) and there is also a degree of modality specificity, with left-sided diminution in volume associated with verbal memory loss and reduction in right volume with visuospatial memory impairment (De Toledo-Morrell et al., 2000).

Remote memory The ability to recall remote memories has substantial implications for a person with AD, forming a basis, for example, for self-knowledge and a means to share social understanding. It is a common impression that in AD very distant memories are more likely to be preserved. This impression is largely supported by formal studies that have investigated either remote memories for events specific to the individual, termed autobiographical memory, or shared historical knowledge, termed ‘public information’.

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Autobiographical memory has been tested by requiring people to recall personal incidences in specific periods of their lives using a semi-structured interview, as is the case with the Autobiographical Memory Interview (Kopelman et al., 1989). Studies using these techniques have tended to show a ‘gentle’ temporal gradient compared to healthy controls with long-term information recalled relatively more frequently for autobiographical incidents (Greene et al., 1995; Kopelman et al., 1989). However, this was not the case for personal semantic memories (facts about the person’s life), with a flat relative gradient (Greene et al., 1995). Fromholt and Larson (1991) used a different technique in which people were given 15 minutes to talk about past life events. This study showed that recalled memories peak in adolescence/ early adult life, then decline across the life span, with a modest increase for more recent memories. The same effect occurred in people with dementia and control participants, but with an overall lower level. Loss of more sparse middle and late life memories may explain why people with AD may revert to talking as if they are in the past. Memory for public information has been tested using photographs of famous people within specific decades, a method known as the Famous Faces Test. This tends to show the same relative reduction in more recent memories as is found with autobiographical memories (Beatty et al., 1988; Greene & Hodges, 1996; Wilson et al., 1981). On other tests of knowledge for public events this shows a more variable result, with Wilson et al. (1981) finding that knowledge about people did not show a relative gradient and Sagar et al. (1988) finding a gradient for recognition of content of public events but not dates. Kopelman (1989) found a gradient on a ‘Famous News Events’ test.

Emotional memory Of interest to understanding a qualitative aspect of memory in AD, there have been some studies of emotional memory, both using laboratory tasks and also exploring memories for real-world events that produce a high emotional reaction. Tasks in the laboratory have shown varied results, with one study by Kazui et al. (2000) showing the normal memory enhancement for emotionally arousing stories and another by Moayeri et al. (2000) suggesting this applies to negative parts of stories, rather than positive parts. Hamann, Monarch and Goldstein (2000), found normal emotional responsivity for picture stimuli, as indicated by skin conductance and also enhancement for free recall. For real world events, a study by Ikeda et al. (1998) explored the memories of survivors of the Kobe earthquake and compared this to memory of an MRI scan; 86% of people with AD remembered the earthquake, but only 31% the MRI scan. Recently, Budson et al. (2004) explored memory for the US World Trade Centre terrorist attack in New York City. People with AD remembered the event less well than those with mild cognitive impairment and controls. Additionally, they did not report the same intensity of emotional response. On the other hand they showed better memories for personal than for factual information around the events.

Semantic memory This type of memory refers to storage of concepts and knowledge and consists of more permanently stored long-term memory representations that may exist in temporal or parietal

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regions, and not the primary memory circuits that support episodic memory. In AD, early loss of semantic memory is apparent and this can be demonstrated using a variety of tasks, including verbal fluency tests, object naming and matching pictures. Error analyses have shown that the impairments in such tasks may have a semantic origin, with errors for the same items being found across tasks in particular individuals (Hodges et al., 1990). Additionally, it has been found that richer descriptions are made for those objects that are more likely to be named (Hodges, Salmon & Butters, 1996). There is also some evidence for category-specific semantic loss in AD, with some showing particularly difficulty with living and others for non-living things (Garrard et al., 1998; Gonnerman et al., 1997).

Procedural memory In contrast to episodic and semantic memory, there are types of memories that rely on implicit processes that do not require conscious recollection, and facilitate cognitive or skill-based activity. This is either through exposure to material, termed priming or repeated practice on specific tasks that results in an improvement in performance, termed skill learning. Priming Priming can be split into two main types, conceptual and perceptual (Roediger & Blaxton, 1987). The former refers to priming that occurs at the level of meaning or content. For example, word-stem completion, in which a person is exposed to a list of target words and then required to generate words beginning with a series of three letter stems, some of which match the previously presented words (e.g. ELE for ELEPHANT). Although tasks are designed so that the participant is not consciously attempting to retrieve the previous word, they are more likely to come up with it than an alternative. People with AD show a reduction in priming of this type across different experiments (reviewed by Meiran & Jelicic, 1995). There is some suggestion that this impairment is related to a reduction in semantic memory function although there are other theoretical accounts (Salmon and Fennema-Notestine, 2004). Perceptual priming occurs at the auditory or visual level of stimuli. For example, if a word is presented and repeated by the participant this speeds up the rate at which it can be identified and repeated, in comparison to words not previously presented. This type of priming has been shown not to be impaired in AD (Verfaellie, Keane & Johnson, 2000) and this applies also to visually presented material (see, for example, Balota & Duchek, 1991; Keane et al., 1991) and related tasks, such as reading geometrically transformed script (for example, Grober et al., 1992). Skill learning Similarly, there is evidence that skill learning is not impaired, at least in mild AD. This has been demonstrated using a variety of tasks, including learning on the pursuit rotor task (Eslinger & Damasio, 1986), learning to read mirror-reversed text (e.g. Huberman et al., 1994), tracing patterns in mirror-reversal mode (Gabrielli et al., 1993) and serial reaction time (Grafman et al., 1990). There is evidence that such learning relies not on the cortical structures that degenerate in AD, but rather neurostriatal regions (see the section on Huntington’s disease below, pp. 176).

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Working memory The defining feature of working memory function is the ability to hold small amounts of information in a temporary fashion, material that is rapidly discarded unless encoded for longer term storage, for example using episodic memory. Working memory function relies on a number of storage and rehearsal mechanisms, the most detailed account of these subsumed under the working memory model (WMM) developed by Baddeley (1992). In AD there is some understanding of how working memory deteriorates in the early stages. In particular it appears that the control mechanisms that coordinate working memory, termed the central executive system in the WMM, are particularly susceptible. This mechanism has been tested by requiring patients with AD to do dual tasks involving working memory, for example, remembering short strings of letter and a tapping task (Morris, 1986) or remembering strings of digits whilst tracking a moving object on a computer screen (Baddeley, Della Sala & Spinnler, 1991). AD patients are substantially impaired on such tasks, which show very little or no effect of normal ageing (Baddeley, Della Sala & Spinnler, 1991; Morris 1994). In contrast, there is evidence for relative preservation of the verbal working-memory storage mechanisms. Specifically, this was investigated by Morris (1984, 1987), who found that the articulatory loop system, a mechanism for rehearsing and phonological storage of material, is intact. Less is known about visuospatial storage in working memory but there is evidence of substantial impairment on tasks that measure visuospatial working memory (Sahgal, 1995). The preserved articulatory loop system may account for why people with early AD are able to do relatively well on a simple forward digit span task, whereas if they have to manipulate digits as in a backward digits span task or alphanumeric span they can show substantial impairment.

Language Although memory impairment is a distinct early feature, language impairment can also be seen early on, becoming evident approximately one to three years following the onset of AD (Kertesz, 2004). Indeed subtle loss of language function has been observed prior to formal diagnosis in public figures, a notable example being Brian Butterworth’s contemporaneous analysis of the subtle alternations in language in the speeches of Ronald Reagan prior to the 1984 US presidency elections (Sunday Times, 4 November, 1984). Additionally, Garrard et al. (2004) have analysed the final novel of Iris Murdoch, published shortly prior to her diagnosis and found deterioration in semantic skills and in the level of sophistication of her vocabulary. An early expression of language dysfunction is problems with word retrieval, although because this occurs in varying degrees with normal ageing it should not be used as a diagnostic sign. Word retrieval impairment is accompanied by circumlocutious language production. With the progression of AD, the syntactical output simplifies, with comprehension difficulties emerging. This applies both to spoken and written language. The latter can also indicate early subtle changes and this has been studied, for example, by Forbes et al. (2004), who found simplification of grammatical structure, with reduced phrase length and loss of vocabulary acquired late in the life of the person. At a later stage, other signs of language impairment emerge, including paraphasic errors and verbal perseveration. There

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is an issue as to whether language impairment in AD can be considered to constitute of a type of aphasia or whether this term should only be applied to focal language impairment. Those researchers who have applied aphasic models to AD have suggested that most people with AD show language deterioration corresponding to anomia, Wernicke’s and transcortical aphasia (Appell et al., 1982; Cummings, 1985; Hier et al., 1985). The different features of language disorder in AD have been explored individually to determine a more detailed pattern. Naming This has been studied extensively in AD and problems with naming are an early feature (White Williams et al., 1989). The ability to name an object or action calls upon a relatively complex array of functions including lexical access, visual perceptual ability and semantic processing. For this reason it has not been easy to establish a clear locus for the early naming difficulties. There is some indication that the impairment is not primarily due to perceptual disorder, as indicated by the fact that naming errors tend to be semantic rather than visual (Bayles & Tomoeda, 1983; Salmon et al., 1999). There is also some suggestion that the naming impairment might be category specific (Fung et al., 2000; but see Montanes et al. 1995). Lexical access The fluency of spontaneous speech may be disrupted in AD and this may reflect an increase in word-finding difficulties with attempts to substitute items with paraphrases or descriptions (Blanken et al., 1987). In addition, lexical access may be more prominent on formal testing, for example the use of verbal fluency tasks such as category fluency (for instance, providing a list of animals or words) or letter fluency, which involves requiring retrieval of words that start with particular letters, as in the Controlled Oral Word Association Test. Such tasks are considered to be more sensitive in AD than naming tests (Hodges et al., 1990; Nebes, 1989). There is evidence that lexical access cued by categories shows a similar level of impairment as that cued by phonological features and that it is not necessarily a semantic impairment that forms the basis of the difficulty with word retrieval (Fernaeus & Almkvist, 1998). Nevertheless, longitudinal studies have shown differential rates of deterioration for category and letter fluency (Salmon et al., 1999). Syntax The general view is that syntax production is not impaired until a later stage of AD. When language has been investigated in detail, there is some indication that more complex syntactic structures reveal impairment, with paragrammatisms and inappropriate use of syntax (Blanken et al., 1987). Comprehension In AD, there is a relative preservation of receptive functions such as discrimination of speech sounds and word recognition. Simple commands are also relatively well understood, but impairments are found with more complex material. Material with more complex syntax or

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that places demands on understanding referential expressions highlights impairment, with poor executive functioning or working memory contribution to such impairment (Almor et al., 1999). Reduced comprehension is also related to breakdown in semantic memory in AD (Hodges, Salmon & Butters, 1991, 1992). Pragmatics An additional aspect of language disorder is the breakdown of pragmatics, that ability to use language to communicate in an everyday sense. In early AD discourse reduces in communicative power, with loss of communicated information, clear communicative intent and the ability to regulate conversation (Hutchison & Jensen, 1980; Orange & Kertesz, 2000). The latter includes the ability follow the rules of conversation, such as turn taking, maintaining a topic and appropriate conversational ‘repair’ (Orange, Lubinski & Higginbotham, 1996).

Reading A past view has been that reading aloud is preserved in AD, even although the initial report by Alzheimer (1907) noted reading deficits in his famous case study. This contrasts with reading comprehension, which is clearly impaired AD (Cummings, Houlihan & Hill, 1986). The issue concerning oral reading is now understood to be more complex than first indicated, as demonstrated by detailed experimental study. A basis for preserved oral reading has come from studies using the National Adult Reading Test (Nelson, 1982). Original studies using this test, which requires reading words with atypical or exceptional spelling-to-sound correspondences, showed preserved reading and hence it has been used as test of premorbid intellectual ability (Nelson & O’Connell, 1978). Nevertheless, a series of studies have shown mixed results in terms of impairment (O’Carroll et al., 1987; Columbo et al., 2000), with some longitudinal studies showing a decline (Cockburn et al., 2000) and others showing impairment even in mild dementia (Patterson et al., 1994). Nevertheless, there appears to be a relative preservation of oral word reading and the reasons for this have been considered in relation to models of reading. A prominent theoretical distinction is the dual-route model (Coltheart et al., 2001). Here, there is a lexical route with direct access to language output, with pronunciation through accessing the phonological representation of words. This contrasts with a sublexical route that involves linking up a visual analysis of a word through grapheme-to-phoneme conversion. There is also a third route, which provides lexical access to the semantic system and then through to production. In AD, the ability of the NART to predict premorbid intelligence is because irregular words can be accessed via either the lexical or semantic routes and these mechanisms show relative preservation, hence supporting reading ability. An alternative account has been proposed in the context of connectionist/neural network modelling, in which lexical and sublexical processing is achieved by the same representations and processes (see Graham & Patterson, 2004). More detailed studies have suggested that people with AD present with surface dyslexia (Balota & Ferraro, 1993; Noble, Glosser & Grossman, 2002; Patterson, Graham & Hodges, 1994). Here, there is the tendency to produce regularization errors with irregularly spelt words (for instance, the word glove is pronounced rhyming with stove). An exception to the pattern of surface dyslexia is that nonword reading is impaired in AD (Passafiume, Di Giacomo & Giubilei, 2000).

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It has been hypothesized that in the context of connectionist models of reading semantic memory representations are needed to help support processing of words that are of low frequency or have spelling-sound correspondences that are seen in relatively few words. Hence, the semantic memory loss in AD contributes to problems in reading such words. This is supported by several studies of reading in AD (for example, Patterson, Graham & Hodges, 1994; Weekes et al., 1999; see Graham & Patterson, 2004, for a more detailed discussion of this topic).

Writing and spelling An early sign of AD is agraphia, with written language tending to be more impaired than oral language (Kertesz, 2004). Agraphia also tends to be associated with dementia severity and reflects many features of language and semantic dysfunction in general. For example, when writing a description, the text is less informative and shorter, with fewer subordinate clauses as illustrated by the study of Iris Murdoch conducted by Garrard et al. (2004). Added to this, problems with praxis result in spatial mechanical difficulties (Hughes et al., 1997). Spelling errors show a distinct pattern, with the tendency for regularly spelt words to be preserved but impairment on words with exceptional and unpredictable sound-spelling correspondences. Additionally, people with AD may produce phonologically plausibly incorrect spellings (such as yot for yacht) (Weekes & Coltheart, 1996). As AD progresses, there is an increase in the quantity of non-phonologically plausible errors (e.g. Hillis et al., 1996).

Attention Four main types of attention have been investigated in AD, namely, sustained attention (vigilance), phasic attention, selective attention and divided attention (see Perry & Hodges, 1999 for a review). There is little evidence for impairment in sustained attention, the ability to detect targets over a long period. For example, Lines et al. (1991) showed that AD patients were unimpaired when detecting a target digit in a stream of digits. This has been shown also by Johnson et al, (1999). There is, however, impairment when the target that has to be detected requires a working memory load (Baddeley et al., 2001). Like sustained attention, phasic attention, which involves maintaining states of readiness in response to warning tones, is not impaired in early AD, whilst in contrast, selective attention shows impairment (Parasuraman et al., 1992). This has been explored in the context of investigating covert shifts of spatial attention using the Posner spatial attentional shift paradigm. Here a key has to be pressed in response to a stimulus that might be presented either to the left or the right of a computer screen. A warning arrow pointing in the right direction speeds up the response, whereas one in the wrong direction reduces speed, with the participant having to disengage attention from the incorrect half of visual space. Variations on this task have shown that the problem occurs in disengaging attention (Oken et al., 1994; Parasuraman, 2004; Parasuraman et al., 1992) and this is also correlated with hypoperfusion in the parietal lobes (Buck et al., 1997; Parasuraman et al., 1992).

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Executive function The term ‘executive function’ refers to the processes that enable the coordination and sequencing of mental activity and behaviour. In AD, a number of procedures have been used to demonstrate executive function impairment, including the Trail Making Test, the Stroop Test, Verbal Fluency (but these procedures also test have other functions, such as semantic memory), random digit generation, and the Wisconsin Card Sorting Test (WCST; Becker, Bajulaiye & Smith, 1992; Lafleche and Albert, 1995). Such tests are fairly sensitive to early AD, such that floor effects have been observed, for example on the WSCT (Bhutani et al., 1992). Additionally, executive dysfunction is found in the preclinical stage of AD, suggesting that it is a very early sign (Albert et al., 2001; Chen et al., 2001). A specific feature of executive functioning is the ability to coordinate multiple tasks (Baddeley et al., 1986) and this is impaired in early AD. This has been demonstrated initially using simple tasks such as remembering very short strings of letters while simultaneously engaging in rhythmic tapping (Morris, 1986), or in a more sophisticated manner by combining tracking tasks with a modified digit span procedure (Baddeley et al., 1986; 1991; 2001) (see also section on working memory; pp. 167). It has been suggested by Morris (1994, 2004) that a reduction in brain connectivity between major cortical regions plays an important part in the breakdown in executive functioning. The notion of dysconnectivity in neuropsychological syndromes was revived in the 1960s by Geschwind (1965) when it was used to explain certain types of focal neuropsychological disorders such as apraxia and agnosia. In relation to executive function, the notion is that the major secondary and tertiary cortical association areas must communicate in a rapid reiterative manner in order to achieve efficient coordination of cognitive activity. There is direct evidence that this connectivity is important for executive function from studies of the effects of small vessel disease on cognition (O’Sullivan et al., 2004) and there is evidence that periventicular white-matter damage is related specifically with working memory dysfunction (Charlton et al., 2006). Loss of functional connectivity in AD is supported both at a neuropathological and functional imaging level. Loss of anterior-posterior hemisphere connectivity is suggested by laminar-specific damage in the projecting areas of the posterior cortex, which show relatively increased numbers of neuritic plaques, mirrored in anterior regions (Morrison et al., 1986; Pearson et al., 1985). Associated with this is a severe reduction in the number of synapses stemming from those laminar regions from which cortico-cortical fibres project with similar damage to interhemispheric pathways (Masliah et al., 1991).

Visuospatial functioning Impairment in visuospatial functioning in AD can be linked to changes in parietal or temporal lobe function. Impairments are found in a variety of tasks, including the Benton Line Orientation and Face Recognition tests (Eslinger & Benton, 1983), or figure ground identification (Mendez et al., 1990). In addition, visuospatial constructional impairments are easily found on tasks such as the Wechsler Adult Intelligence Scale III (WAIS-III) (Wechsler, 1997) Block Design test. It has been shown that whereas language dysfunction is associated with left-hemisphere hypoperfusion in AD, loss of visuospatial function is

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associated with right parietal hypoperfusion (Foster et al., 1984). This pattern accentuates as AD progresses (Haxby, 1990). In addition, it has been reported by Ishiai et al. (2000) that visual neglect in left visual space, as indicated by line bisection tests, is linked to asymmetric temporo-parietal hypoperfusion. Visual perceptual impairment may also contribute to difficulties with object recognition or naming. This is supported by the finding that confrontation naming is increased when photographs or line drawings of objects are used rather than the objects themselves. Additionally, visual errors (e.g. tie for stethoscope) are found in object naming, although this emerges on follow-up over three years (Hodges, Salmon et al., 1991), suggesting that it is not an early feature.

Summary In summary, AD can be considered as a multifaceted neuropsychological disorder, in which a ‘patchwork’ of impairments has been elucidated to the extent that it has been shown that they are not primarily global in nature, as was the original impression. Hence, the primary features are a prodromal period that includes memory and executive dysfunction, then the established onset cases showing episodic, semantic and remote memory loss, with conceptual and perceptual priming impaired, but with intact skill learning. Language disturbance is most similar to transcortical sensory aphasia, at least in the early stages, with relatively preserved phonology and syntax. Sustained and phasic attention are more resilient, but selective attention is impaired. Executive dysfunction is prominent with particular difficulty with divided attention. Finally, visuospatial functioning is sensitive to impairment and an early feature.

NEURODEGENERATIVE DISORDERS CAUSING DEMENTIA OTHER THAN ALZHEIMER’S DISEASE As noted above, only the main types of neurodegenerative dementia are considered in this chapter. This section considers neurodegenerative conditions excluding those in which abnormality is considered to be found primarily in brain regions outside of the cerebral cortex, for example, disorders such as Parkinson’s disease where the abnormality is extrapyramidal in nature, involving the basal ganglia. The disorders considered are thought to make up about 25% of non-vascular dementias.

Frontotemporal Dementia In recent years, there has been an increase in understanding of what are termed frontotemporal dementias (FTD). These conditions have as their main characteristic, as the title suggests, neurodegeneration of the frontal and anterior temporal lobes (Neary & Snowden, 1996). In the past, this dementia was commonly mistaken for AD and recent attempts have been made to improve the clinical diagnosis by defining the clinical criteria. These include the progressive onset of behavioural or cognitive deficits that result in a change in personality

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or language disorder, while excluding other neurological or non-neurological conditions (McKhann et al., 2001). Features of personality changes include disinhibition, and loss of personal and social awareness (Neary & Snowden, 1996). Historically, the term FTD arose out of the finding that there were many patients with the clinical features of Pick’s disease, but without the classical lobar atrophy or ‘Pick bodies’. The entity Pick’s disease still remained (Binetti et al., 2000; Constantinides, Richard & Tissot, 1985), but this observation gave rise to the newly defined neurological disorder, frontal lobe degeneration of the non-Alzheimer type or (based on the clinical syndrome) frontal lobe type dementia (Neary, 1998). This entity was grouped together with primary progressive aphasia or semantic dementia to create the term frontotemporal dementia.

Frontal Lobe Type Dementia The form of FTD that has been called frontal lobe type dementia is one of the more common types and has the associated personality changes, with additional language deterioration and aphasic impairment similar to dynamic aphasia. The neuropathological changes extend to the temporal lobes and, in contrast to AD, there is no abnormal build up of neuritic plaques or neurofibrillary tangles. In this disorder neuropsychological investigations suggest executive dysfunction, including reductions in divided attention and mental flexibility and impaired performance on the Tower of London Test (Carlin et al., 2000; Gregory et al., 2002). Visuospatial and praxic abilities are relatively preserved, as is memory function (Hodges et al., 1999). People with FTD have also been investigated with respect to Theory of Mind (TOM) ability and this is shown to be impaired, despite good comprehension of TOM stories (Gregory et al., 2002).

Semantic Dementia In contrast, semantic dementia has primarily temporal lobe atrophy, particularly in the anterior portion, but also involving the parahippocampal and fusiform regions (Mummery et al., 1999). Semantic dementia is characterized by a breakdown in semantic memory, which results in a range of impairments on neuropsychological tests, including reduced verbal fluency, naming ability and picture-picture matching (Hodges, Salmon & Butters, 1992). In addition, there is loss of object knowledge, as indicated by picture matching and also impairment on nonverbal tests of person knowledge (Hodges, Salmon & Butters, 1992)

Diffuse Lewy Body Disease (DLBD) In common with Alzheimer’s disease, DLBD presents a progressive impairment in cognitive functioning, including reductions in attention, memory and executive function. In addition there are extrapyramidal symptoms, which include bradykinesia, rigidity and masked faces, together with psychiatric symptoms, which may include psychotic symptoms such as visual hallucinations and paranoid ideation. More detailed studies have shown patterns of aphasic disturbance (Luis et al., 1999; Perry et al., 1990). There is also evidence that there is a more rapid decline in cognitive functioning than in AD (Olicheny et al., 1998) and that

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attention and visuospatial function, including visual memory, are more impaired (Gilbert et al., 2004; Salmon et al., 1996). The visuospatial impairments, including a reduction in visual perception, may be related to the greater degree of neuropathology in parietal and occipital regions, with hypoperfusion of these regions greater than in AD (Mosimann et al., 2004).

Motor Neurone Disease (MND) The traditional view of MND was that it was purely a motor disorder, resulting from degeneration of the upper and lower motor neurones. However, it has been shown that cognitive changes occur in MND including the presence of a frontotemporal dementia in about 3-5% of patients (Kew & Leigh, 1992). The cognitive deficits include executive impairment, particularly on tests of verbal fluency (when controlling for motor dysfunction) (Abrahams et al., 2004). In addition, there are impairments across a range of executive functions (Abrahams & Goldstein, 2002). Memory has not been found to be consistently impaired and visuospatial functioning is preserved. Language functioning is generally preserved but there is some indication of impairment in comprehension (Rakowicz & Hodges, 1998).

EXTRAPYRAMIDAL NEURODEGENERATIVE DISORDERS This section concerns the main extrapyramidal disorders. Although these may be considered in the first instance as disorders of motor functioning, they all have associated neuropsychological deficits and may lead to dementia.

Parkinson’s Disease (PD) This progressive, idiopathic neurological disorder related to loss of dopaminergic cells in the substantia nigra has in the past been viewed as a subcortical disorder, with the symptoms of resting tremor, akinesia and bradykinesia, combined with impairment in motor planning and function. However, it is now recognized that higher order cognitive functions may be affected and these may not necessarily be due to subcortical neurodegeneration (Hu et al., 2000). A proportion of patients develop dementia and although the prevalence is difficult to determine this has been estimated to be around 15%. In those people with PD who do not develop dementia there is, nevertheless, a range of more subtle cognitive deficits. These include executive impairments, as reflected in reduced performance on tasks such as the Wisconsin Card Sorting Task, with experimental tasks suggesting reduced set generation, maintenance and shifting (Gauntlett-Gilbert, Roberts & Brown, 1999). There is also impairment in word fluency (Zakzanis & Freedman, 1999). Planning impairment has been established by Morris et al. (1988), principally in the speed of planning, even when taking into account reduction in motor speed. Memory is impaired but with relatively preserved recognition memory (Wittington, Podd & Kann, 2000) but impairments in free recall, temporal ordering and self-ordered pointing (Gabrieli et al., 1996). Parkinson’s disease is discussed in more detail in Chapter 12, this volume.

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Progressive Supranuclear Palsy (PSP) Progressive supranuclear palsy (PSP) is also called Steele-Richardson-Olszewski’s syndrome after the group of people who characterized this neurological condition (Steele, Richardson & Olszewski, 1964). It is an extrapyramidal syndrome, with the main features being axial rigidity, postural instability and oculomotor disturbances. In addition, there are mild to moderate cognitive and behavioural changes affecting a wide range of functions (Magherini & Litvan, 2005) and neuropsychiatric symptoms (Aarsland, Litvan & Larsen, 2001). These include, in common with other ‘subcortical’ dementias (Albert, Feldman & Willis, 1974), cognitive slowing over and above the reduction in motor speed, in this case more easily separable, and executive dysfunction, in which patients find that they are unable to plan and sequence their actions normally. More subtle changes in personality occur and these include apathy (unrelated to dysphoria) and disinhibition (Aasland, Litvan & Larsen, 2001; Litvan, Cummings & Mega, 1998). Formally, impairments are seen across a range of executive functioning tasks. These include difficulties adopting the right strategies on the Wisconsin Card Sorting Test (Pillon et al., 1991) and difficulties on tasks requiring response inhibition or set shifting, such as the Trail Making Test and the Stroop test (Grafman et al., 1990; Pillon et al., 1995). There is also impairment on problem-solving tasks in general, including the WAIS-III Picture Arrangement, Ravens Progressive Matrices and the Tower of Hanoi (Cambier et al., 1985; Grafman et al., 1990; Johnson, Litman & Grafman, 1991). In addition, there are impairments in attention and visuospatial orientated activities. A typical feature is what is termed ‘visual grasping’, in which the patient is unable to direct attention away from a visual element within a visual field (Rafal, 1992). Allied to this are problems, identified by Rafal and Posner (Rafal, 1992; Rafal & Posner, 1987) in ‘vertical plane attention’. In this case, people with PSP failed to benefit in the normal fashion from vertically aligned orienting cues in a reaction time task. Problems with visually guided behaviour may contribute to difficulties on visuospatial tasks, and poor performance is seen on the Benton Judgement of Line Orientation Test (Solivieri et al., 1999, 2000) and on the Visual Object and Space Battery (VOSP) (Esmonde et al., 1996). Finally, explicit memory is impaired in PSP, but this seems to secondary to inattention and the inability to use strategies to aid recall (Dubois, Deweer & Pillon, 1996; Pillon et al., 1994). Memory impairment can be ameliorated by using semantic cues, when presented both at encoding and retrieval (Pillon et al., 1995).

Cortical basal degeneration (CBD) This is a relatively rare condition and is associated with a specific pattern of neuropathological changes principally involving, subcortically, the basal ganglia and, cortically, the superior parietal region and frontal lobes. The temporal and occipital lobes are relatively well spared (Dickson et al., 2002) and early on there is motor disorder (Riley & Lang, 2000). Although cognitive dysfunction was originally thought to be rare it is now known that this occurs early in the development of disease and is even seen before the onset of the motoric disorder. The characteristic neuropsychological impairment is limb apraxia, usually asymmetric and ideomotor (Massman et al., 1996). A review of other neuropsychological

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impairments suggest that there are constructional and visuospatial impairments, executive dysfunction, and dysphasia, typically of a nonfluent type, whilst episodic and semantic memory are relatively well preserved (Graham, Bak & Hodges, 2003).

Huntington’s Disease (HD) Huntington’s disease is an autosomal dominant neurodegenerative disorder that primarily affects the striatum and is characterized by involuntary choeiform movements. Associated symptoms are neuropsychological impairments and emotional dysfunction. The neuropsychological impairments include memory disorder, with recall affected and relative preservation of recognition memory (Butters et al., 1986). In contrast, skill learning is generally impaired, specifically in relation to psychomotor learning (Heindel et al., 1988), although there is evidence for preserved incidental sequence learning (Brown et al., 2001). Language functioning is relatively preserved, but with more subtle reductions in syntactical processing and word fluency impairment (Butters et al., 1986). Visuoconstructional difficulties have also been reported and these are not accounted for directly by the motoric impairments (Brouwers et al., 1984). More recently, it has been shown that in early HD psychomotor skills are sensitive to decline with impairments in attention, executive function and immediate memory, but with general cognition, semantic memory and delayed recall memory relatively unimpaired (Ho et al., 2003). Huntington’s disease is associated also with an impairment in emotional expression recognition, particularly for facial expressions displaying disgust (Sprengelmeyer et al., 1996) and this has been linked to decreased insula function (Hennenlotter et al., 2004).

CONCLUSION In conclusion, the chapter has attempted to elucidate the neuropsychological features of the main neurodegenerative dementias. It is clear from this account that there is substantive overlap between aetiologies and that neuropsychological investigations alone will not differentiate the different causes. Nevertheless, the specific characteristics can be explored through clinical assessments, with ideas concerning which aspects are likely to be preserved and which other aspects will be impaired. This, in turn, should help clinical psychologists tailor their assessment approaches in relation to specific disorders, and provide a better insight into how neuropsychological dysfunction will affect abilities or disabilities in relation to specific individuals.

REFERENCES Aarsland, D., Litvan, I. & Larsen, J.P. (2001) Neuropsychiatric symptoms of patients with progressive supranuclear palsy and Parkinson’s disease. Journal of Neuropsychiatry and Clinical Neurosciences, 13, 42–9. Abrahams, S. & Goldstein, L.H. (2002) Motor neurone disease, in Cognitive Deficits in Brain Disorders (eds J.E. Harrison & A. Owen). Martin Dunitz, London.

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Passafiume, D., Di Giacomo, D. & Giubilei, F. (2000) Reading latency of words and nonwords in Alzheimer’s patients. Cortex, 36, 293–8. Patterson, K.E., Graham, N. & Hodges, J.R. (1994) Reading in dementia of the Alzheimer’s type: a preserved ability? Neuropsychology, 8, 395–412. Paulsen, J.S., Butters, N., Salmon, D.P. et al. (1993) Prism adaptation in Alzheimer’s and Huntington’s disease. Neuropsychology, 7, 73–81. Pearson, R.C.A., Esiri, M.M., Hiorns, R.W. et al. (1985) Anatomical correlates of the distribution of the pathological changes in the neocortex in Alzheimer’s disease. Proceedings of the National Academy of Sciences USA, 82, 4531–4. Perry, R.J. & Hodges, J.R. (1999) Attention and executive deficits in Alzheimer disease: a critical review. Brain, 122, 383–404. Perry, R.H., Irving, D., Blessed, G. et al. (1990) Senile dementia of Lewy body type. A clinically and neuropathologically distinct form of Lewy body dementia in the elderly. Journal of Neurological Sciences, 95, 119–39. Pillon, B., Deweer, B., Michon, A. et al. (1994) Are explicit memory disorders of progressive supranuclear palsy related to damage to striatofrontal circuits? Comparison with Alzheimer’s, Parkinson’s, and Huntington’s diseases. Neurology, 44(7), 1264–70. Pillon, B., Dubois, B., Ploska, A. & Agid, Y. (1991) Severity and specificity of cognitive impairment in Alzheimer’s, Huntington’s, and Parkinson’s diseases and progressive supranuclear palsy. Neurology, 41(5): 634–43. Pillon, B., Gouider-Khouja, N., Deweer, B. (1995) Neuropsychological pattern of striatonigral degeneration: comparison with Parkinson’s disease and progressive supranuclear palsy. Journal of Neurology, Neurosurgery and Psychiatry, 58, 174–9. Poldroll, K., Caspary, P., Lange, H.W. & Noth, J. (1988) Language functions in Huntington’s disease. Brain, 111, 1475–503. Rafal, R.D. (1992) Visually guided behavior, in Progressive Supranuclear Palsy: Clinical and Research Approaches (eds I. Litvan & Y. Agid). Oxford University Press,, Oxford, pp. 204– 22. Rafal, R.D. & Posner, M.I. (1987) Deficits in human visual spatial attention following thalamic lesions. Proceedings of the National Academy Sciences USA, 84, 7349–53. Rakowicz, W.P. & Hodges, J.R. (1998) Dementia and aphasia in motor neuron disease: an underrecognised association? Journal of Neurology, Neurosurgery and Psychiatry, 65, 881–9. Riley, D.E. & Lang, A.E. (2000) Clinical diagnostic criteria. Advances in Neurology, 82, 29–34. Rinne, J.O., Lee, M.S., Thompson, P.D. & Marsden, C.D. (1994) Corticobasal degeneration. a clinical study of 36 cases. Brain, 117, 1183–96. Roediger, H.L. & Blaxton, T.A. (1987) Effects of varying modality, surface features, and retention interval on priming in word fragment completion. Memory and Cognition, 15, 379–88. Sagar, H.J., Cohen, N.J., Sulivan, E.V. et al. (1988) Remote memory function in Alzheimer’s disease and Parkinson’s disease. Brain, 111(1), 185–206. Sahgal, A, McKeith, I.G., Galloway, P.H. et al. (1995) Do differences in visuospatial ability between senile dementias of the Alzheimer-type and Lewy body types reflect differences solely in mnemonic function. Journal of Clinical and Experimental Neuropsychology, 17, 35–43. Salmon, D.P., Butters, N. & Chan, A.S. (1999) The deterioration of semantic memory in Alzheimer’s disease. Canadian Journal of Experimental Psychology, 53, 108–17. Salmon, D. & Fennema-Notestine, C. (1994) Implicit memory in Alzheimer’s disease: priming and skill learning. In Cognitive Neuropsychology of Alzheimer’s Disease (eds R.G. Morris & J. Becker). Oxford University Press, Oxford, pp. 153–78. Salmon, D.P., Galasko, D., Hansen, L.A. et al. (1996) Neuropsychological deficits associated with diffuse Lewy body disease. Brain and Cognition, 31(2), 148–65. Small, B.J., Fratiglioni, L., Viitanen, M. et al. (2000) The course of cognitive impairment in preclinical Alzheimer’s disease: 3- and 6- year follow-up of a population-based sample. Archives of Neurology, 57, 839–44. Small, B., Herlitz, A. & B¨ackman, L. (2004) Preclinical Alzheimer’s disease: cognitive and memory functioning, in Cognitive Neuropsychology of Alzheimer’s Disease (eds R.G. Morris & J. Becker). Oxford University Press, Oxford, pp. 64–77.

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Small, B.J., Herlitz, A., Fratiglioni, L. et al. (1997) Cognitive predictors of incident Alzheimer’s disease: a prospective longitudinal study. Neuropsychology, 11, 413–20. Snowden, D.A., Kemper, S.J., Mortimer, J.A. et al. (1996) Linguistic ability in early life and cognitive function and Alzheimer’s disease late life. Journal of the American Medical Association, 275, 528– 32. Soliveri , P., Monza, D., Paridi, D. et al., (1999) Cognitive and magnetic resonance imaging aspects of corticobasal degeneration and progressive supranuclear palsy. Neurology, 53, 502–7. Soliveri, P., Monza, D., Paridi, D. et al. (2000) Neuropsychological follow up in patients with Parkinson’s disease, striatonigral degeneration-type multisystem atrophy, and progressive subnuclear palsy. Journal of Neurology, Neurosurgery and Psychiatry, 69, 313–18. Sprengelmeyer, R., Young, A.W., Calder, A.J. et al., (1996) Loss of disgust. Perception of faces and emotions in Huntington’s disease. Brain, 119, 1647–65. Steele, J.C. (1972) Progessive supranuclear palsy. Brain, 95, 693–704. Steele, J.C., Richardson, J.C. & Olszewski, J. (1964) Progressive supranuclear palsy. A heterogeneous degeneration involving the brain stem, basal ganglia and cerebellum, with vertical gaze and pseudobulbar palsy, nuclear dystonia and dementia. Archives of Neurology, 10, 333–59. Strauss, E., Sherman, E.M.S. & Spreen O. (2006) A Compendium of Neuropsychological Tests, 3rd edn. Oxford University Press, New York. Tierney, M.C., Szalai, J.P., Snow, W.G. et al., (1996) Prediction of probable Alzheimer’s disease in memory-impaired patients: a prospective longitudinal study. Neurology, 46, 661–5. Verfaellie, M., Keane, M.M. & Johnson, G. (2000) Preserved priming in auditory perceptual identification in Alzheimer’s disease. Neuropsychologia, 38, 1581–92. Wechlser, D. (1997) The Wechsler Adult Intelligence Scale III. Psychological Corporation. San Antonio TX. Weekes, B. & Coltheart, M. (1996) Surface dyslexia and surface dysgraphia: treatment studies and their theoretical implications. Cognitive Neuropsychology, 13, 277–315. Weekes, B.S., The, S., Joo, L.K. & Ling, L.W. (1999) Oral reading by Chinese speakers with probably dementia of the Alzheimer’s type. Brain and Language, 69, 466–9. Whalley, L.J., Starr, J.M., Athawes, R. et al. (2000) Childhood mental ability and dementia. Neurology, 55, 1455–9. White Williams, B., Mack, W. & Henderson, V.W. (1989) Boston Naming Test in Alzheimer’s disease. Neuropsychologia, 27, 1073–9. Wilson, R.S., Kaszniak, A.W. & Fox, J.H. (1981) Remote memory in senile dementia. Cortex, 17, 41–8. Wittington, C.J., Podd, J. & Kan, M.M. (2000) Recognition memory impairment in Parkinson’s disease: power and meta-analyses. Neuropsychology, 14(2), 233–46. World Health Organisation (1992) International Classification of Impairments, Disabilities and Handicaps. WHO, Geneva. Zakzanis, K.K. & Freedman, M. (1999) A neuropsychological comparison of demented and nondemented patients with Parkinson’s disease. Applied Neuropsychology, 6, 129–46. Zola, S.M. & Squire, L.R. (2000) The medial temporal lobes and the hippocampus, in The Oxford Handbook of Memory (eds E. Tulving & F.I.M. Craik) . Oxford University Press, Oxford, pp. 485–500.

12

Parkinson’s disease Peter Hobson Glan Clwyd Hospital, Rhyl UK

INTRODUCTION Parkinson’s disease is one of the most common neurodegenerative conditions experienced by older people. What is a neurodegenerative condition? Fundamentally, neurodegeneration corresponds to any pathological condition primarily affecting the nervous system. These conditions are often divided into two groups: those affecting movements and those affecting cognition. These conditions represent a large group of neurological disorders with diverse clinical and pathological expressions, which affect specific subsets of neurons in specific functional anatomic systems. They arise for reasons that are often poorly understood or as yet unknown, and their progression is often inexorable. In general these conditions are quite uncommon and, to confuse matters, many overlap with one another clinically and pathologically, rendering their practical and indeed clinical classification quite challenging. Disorders such as progressive supranuclear palsy (SteeleRichardson syndrome, PSP), multiple system atrophy (MSA), and cortical basal degeneration often have similar clinical expression to Parkinson’s disease (PD), in the physical and motor symptoms they have. However, on closer examination, they are distinct from PD on a clinical basis, as well as in the brain changes found at post-mortem. Because of their rarity, researchers have primarily focused on only a few of the more common neurodegenerative diseases. These include Alzheimer disease (AD), PD, Huntington’s disease (HD), dementia with Lewy bodies (DLB) and motor neurone disease (MND). These conditions have a significant impact on individuals’ wellbeing, and also encroach into their ability to care for themselves and live independently. Generally clinicians are unlikely to come across many of the rarer neurological disorders, but it is nevertheless important for them to understand the relationships that many of these neurological disorders share, particularly with PD and parkinsonism. In order to guide those readers who are not familiar with neurodegenerative conditions, Table 12.1 summarizes the symptomatology associated with PD and a selection of the other conditions affecting the extrapyramidal nervous system (the system involved in the coordination of movement). This chapter will concentrate on PD, because, as will emerge, despite the limitations in many areas of psychosocial research, it still remains one of the few neurodegenerative

Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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Table 12.1 Symptomatology in disorders of the extrapyramidal nervous system. Cognitive Neuropsychiatric impairment Depression Apathy disturbance Parkinsonism +++

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Parkinson’s disease Multiple system atrophy

Corticobasal Ganglionic degeneration Wilson’s disease Huntington’s disease + + + Very strong association ++ Moderate association + Weak association ?? No published evidence

conditions in which there is an evidence base, albeit somewhat sparse, for psychological interventions. Readers who wish to gain a greater knowledge about the clinicopathological features of neurodegenerative diseases, especially the much rarer ones, are encouraged to consult a text such as Beal, Lang and Ludolph (2005).

HOW COMMON IS PARKINSON’S DISEASE? The most powerful risk factor consistently reported for developing a neurodegenerative disease such as PD is increasing age (Ben-Shlomo, 1997; Rajput & Birdi, 1997; Zhang & Roman, 1993). In industrial and some developing nations, epidemiologists consistently point to an increase in the number of older people (see Chapter 1, this volume), who will inevitably be more susceptible to developing these neurological conditions. Projected population estimates suggest that by 2040 deaths from PD, AD and MND will overtake deaths from cancer (Lilienfeld et al., 1990). Even though most research into neurodegenerative diseases is heavily skewed toward a medical model of finding a cause and ultimately a cure for these conditions, very few have effective pharmacological treatments. Even in conditions such as PD where there are effective treatments, these are at best symptomatic, many have undesirable side effects and furthermore they rarely improve the person’s psychological wellbeing. The majority of epidemiological studies reported throughout the world suggest that the prevalence (the number of cases of a condition in a given population) of PD is strongly associated with increasing chronological age. In the UK, the most recent prevalence studies have reported that PD affects around 1 in 1,000 of the population, with an onset of symptoms usually between 40 and 70 years, and with a mean age of onset in the sixth decade (Hobson,

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Gallacher & Meara, 2005; Schrag, Ben-Shlomo & Quinn, 2000). Although there are cases before the fourth decade, they are much rarer but are nevertheless just as challenging in their management. The incidence of PD (how many new cases are ascertained in a population over time) is a more robust measure for determining risk factors and disease aetiology (Meara & Hobson, 2000). However, there have been few incidence studies of any value, most probably due the problems with case ascertainment, difficulties in maintaining longitudinal followup and the rarity of the disease. The crude estimate of the incidence of PD per 100,000 worldwide lies between 2–24 cases per year and, again, it rises with age (Rajput & Birdi, 1997; Zhang & Roman, 1993).

WHAT ARE THE CARDINAL SIGNS OF PARKINSON’S DISEASE? In the early part of the nineteenth century, James Parkinson (1755–1824), a family doctor from the Hoxton area in London’s East End, gave in his seminal paper, ‘An essay on the shaking palsy’, a description of a number of patients he observed with this incurable condition (Parkinson, 1817). Today, although the cause of this condition, which now bears Parkinson’s name, still remains unknown, we do have a greater understanding of its primary neuropathological features. These include degeneration of pigmented cells in the substantia nigra pars compacta and the presence of Lewy bodies (filamentous inclusions within cells), which cause a depletion of dopamine, resulting in the classic signs of the condition. The cardinal motor symptoms that result from this cell loss express themselves physically as akinesia, rigidity and resting tremor. Akinesia is a slowness of physical movement, and is recognizable as lack of facial expression, festinate gait (short steps in stride length), reduced arm swing whilst walking, difficulties arising from seating, problems turning over in bed, difficulties with fine motor movements, and hypophonia (whispering speech). Rigidity is an abnormal resistance to the passive movement of joints, which feels like a clicking movement (sometimes described as cogwheeling) whilst a joint is moved in a relaxed state. Probably the most obvious sign of the disease is the presence of a rest tremor. This can affect the person’s limbs, torso and head, and tends to reduce or disappear when the person is involved in an action (see Rodnitzky, 2000, for an in-depth description of the diagnosis of PD and parkinsonism). However, despite the known clinical signs of the condition, a number of community based studies have reported that around 30 % of cases previously diagnosed with PD, turn out not to have any signs of parkinsonism (Hughes et al., 2002; Meara, Bhowmick & Hobson, 1999; Schrag, Ben-Shlomo, & Quinn, 2002). Currently, analysis of a person’s brain at post mortem is the only definitive evidence that an individual’s symptoms during life did actually arise from PD (Ansorge, Lees & Daniel, 1997; De Rijk et al., 1997; Hughes et al., 1992, 1993; Rajput, Rozdilsky & Rajput, 1991). The reason for these difficulties arise because other neurodegenerative conditions such as, AD, DLB, PSP, corticobasal degeneration, MSA and cerebrovascular disease, can coexist with PD or present with similar physical signs of PD. Drug-induced parkinsonian states are also often observed in many psychiatric disorders, especially in those people who have been treated with the neuroleptic medications. Some other conditions such as essential tremor, arthritis and vascular gait disorders also may also give an impression of a parkinsonian state especially in the older adult.

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COGNITIVE IMPAIRMENT In a typical older adult PD population, at least one-third will have significant cognitive impairments which will fulfil criteria for dementia (Aarsland et al., 1996; Cummings, 1988; Hobson & Meara, 1999b). Recent longitudinal community-based epidemiological studies have shown that the risk for developing dementia compared to an index population is between fivefold and sixfold (Aarsland et al., 2001; Hobson & Meara 2004). Referring to Table 12.1, nearly all of the neurodegenerative disorders listed demonstrate a moderate or strong association with cognitive impairment. Characteristically, executive dysfunction and impairments in working memory are frequently reported in these diseases (Dubois & Pillon, 1998; Levin, Tomer & Rey, 1992; Owen et al., 1993). Lichter (2001) has suggested that the importance of disruption in fontal-subcortical circuits (FSC) in neurodegenerative diseases must be considered together with the psychosocial aspects and not as separate features. Cognitive impairment in PD plays a major role in individuals’ physical and psychological wellbeing and how well they respond to treatment. In PD, specific deficits in FSC include poor problem solving and planning, perseveration, difficulty generating novel ideas, impaired working memory, and speech-monitoring deficits (Lichter, 2001). Furthermore, personality changes such as inflexibility, depression, mania, psychosis, apathy and obsessive compulsive disorders have been implicated in changes in the FCS in these individuals (Taylor & Saint-Cyr, 1993). Specifically, impairments in executive functioning have been shown to be predictors for non-response to antidepressant pharmacological treatments (Alexpoulos et al., 2000; Kalayam & Alexpoulos 1999). Cognitive changes in PD are a strong predictor for psychosocial and neurobehavioural functioning in these individuals. The difficulty in clinical practice is in separating the effects of pharmacological treatments, disease progression and other co-morbidities from cognitive dysfunction. This is often challenging, but is necessary to effectively manage this condition.

PSYCHOLOGICAL AND NEUROPSYCHIATRIC DISTURBANCES IN PARKINSON’S DISEASE Despite the fact that psychological disturbances in PD have been described since the nineteenth century, it was not until the early twentieth century that these symptoms were accepted as an important part of the illness. The psychiatric and psychological disturbances of PD are as problematic as the motor and physical signs. Some of the most frequent psychological problems described are depression, anxiety, psychosis, hallucinations and hallucinosis, confusion, dementia, apathy, personality changes, compulsiveness and anhedonia. The problem is that these conditions often overlap with the pathology of the disease and drug interactions. Although textbooks in PD suggest that drug therapy is the mainstay of successful management, historically there have only been effective symptomatic drug treatments for PD available in the last 30 years. We should not decry their importance and the immense benefit these drugs have brought patients but they are not a cure-all and at best they are palliative. In common with all pharmaceutical interventions, especially in older people, the aim is to achieve the best benefit with the least side effects. The side effects of antiparkinsonian drugs, especially in higher doses, are known to include impaired cognition, delirium,

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hallucinosis, vivid dreams, sleep disturbances, and psychosis. The longer a person lives with PD the greater their likelihood of developing drug-induced involuntary movements (described as dyskinesia) and ‘On/Off’ periods, where patients experience a state where the drugs have no effect and become more unpredictable in their effectiveness. Understandably, many suffer from increased anxiety, mood swings and depressive episodes as the disease progresses and it is unclear if this is a psychological or biological response to the condition (Jankovic, 2005; Matson, 2002; Richard, Justus & Kurlan, 2001; Witjas et al., 2002).

DEPRESSIVE SYMPTOMS IN PARKINSON’S DISEASE The most frequently cited non-motor complication of PD is depression. It has been suggested that depression is often reported prior to the onset of motor symptoms, which may be the result of biochemical disturbances of the serotoninergic or dopaminergic system (Piccirilli, D’Alessandro, Finali & Piccinin, 1997). Support for this also comes from a retrospective cohort study of subjects who were diagnosed with depression from 1975–90 (Schuurman et al., 2002). These authors reported that compared to an age- and sex-matched nondepressed comparison cohort, those with depression had a threefold increased risk for developing PD or parkinsonism. The prevalence of depression in PD is thought to be around 40 % (Cummings, 1992), although some community-based investigations have reported depressive symptoms to occur in as many as 60 % of PD subjects (Meara, Mitchelmore & Hobson, 1999). In spite of this, depression is frequently overlooked or undertreated and, furthermore, the efficacy of therapeutic interventions, either pharmacological or non-pharmacological, is still poorly understood.

IS DEPRESSION IN PARKINSON’S DISEASE PSYCHOLOGICAL OR BIOLOGICAL? Treatment and intervention for the primary motor symptoms of PD often takes precedence over any interventions for depression or other psychological disturbances. Regardless of the limitations of pharmacological interventions, clinicians still tend to adopt a model of depression that is in reaction to the disease presentation or its progress. Although there is some evidence for a neurobiological basis for depression in PD, a psychological reaction to the disease is much harder to define clearly due to overlapping confounding factors such as disease progression, drug toxicity, comorbidity, and social circumstances (Brown & Jahanshahi, 1995). Risk factors for depression in PD include younger age of onset of symptoms, female gender, greater disease severity, more restricted activities of daily living, a longer duration of physical symptoms, rapidly progressive symptoms and/or cognitive impairment (Brown & Jahanshahi, 1995; Ehmann et al., 1990b; Gotham, Brown & Marsden, 1988). This may explain why certain people with PD are more likely to experience depression and why in pharmaceutical trials of antidepressants a significant number of patients fail to respond to the treatment. Brown and Jahanshahi (1995) have argued that the only means of determining the true relationship between PD and depression is to ensure that the many associated symptoms of PD, and the specific social and psychological circumstances of each patient are considered as a whole. Nevertheless, the treatment paradigms suggested for the management of PD still focus too narrowly on symptom control (MacMahon, 2001).

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Whilst neuropsychological complications may be recognized, all interventions tend to be suggested within the rigid biomedical framework, with the services of a psychologist only sought when traditional medical interventions fail to resolve the person’s mood disorder. The importance of the overlap between the biological aspects of the disease and the psychological and psychosocial reaction to the condition is not sufficiently appreciated in clinical practice. Brown and Jahanshahi (1995) have argued that the neurobiological factors that contribute to PD cannot be separated from the psychological and wider social factors that contribute to this disease.

TREATING DEPRESSION IN PARKINSON’S DISEASE What are the treatment options available for depression in PD? Antidepressant therapy (Meara, Bhowmick & Hobson, 1998; Tom & Cummings, 1998; Weintraub et al., 2005) and electro-convulsive treatment (Yudofsky, 1999) have been shown to be useful in treating depression in PD. However, there has been a lack of rigorous trials to support the routine use of antidepressants for depression in PD. The meta-analysis of the effect size of antidepressant therapy in PD reported by Weintraub et al. (2005) revealed that there were no differences in effect between placebo and active treatment. This highlights the weaknesses of most studies, which have been underpowered, cross-sectional, lack control groups and on closer examination, even in controlled investigations, the resolution of depression at best only ranges between 20–40 %. In view of this, do psychological therapies offer an effective alternative to pharmaceutical interventions for depression in PD? In older populations there is some evidence that behavioural therapy, cognitive behavioural therapy (CBT), cognitive bibliotherapy, problem-solving therapy, brief psychodynamic therapy and reminiscence therapy may all be beneficial psychological therapies for depression (Scogin et al., 2005; see also Chapter 27, this volume). In PD we are faced with a paucity of robust research evidence in support of the effectiveness of psychological interventions. The recent Cochrane review by Ghazi-Noori et al. (2005) acknowledged that CBT is an effective intervention for depression in chronic illness. However, in this review they were only able to identify two small studies by Dreisig et al. (1999), and Cole and Vaughan (2005), employing CBT in depressed PD subjects, and were unable to demonstrate that CBT was helpful in resolving depressive symptoms. Nevertheless, in these investigations, CBT seemed to be more effective in resolving other psychological problems such as anxiety, hopelessness, anger, guilt, pessimism and sense of failure. In a CBT intervention study of older adults with anxiety, Mohlman and Gorman (2005) reported that individuals with executive function impairments made a poorer response to therapy, compared with those who did not have executive dysfunction. They postulated that intact executive skills are necessary in order for CBT to be effective. Given the known association of PD with FCS impairments and executive dysfunction, this may help explain the ineffectiveness of CBT in resolving depression within this group (Mohlman, 2005).

APATHY AND INSIGHT IN PARKINSON’S DISEASE The clinical description of apathy is a lack of interest, especially regarding matters of general importance or appeal, indifference, lack of emotion of feeling or impassiveness. Apathy

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is a frequently reported behavioural disorder in PD, which may be independent of disease severity, depression, psychological reaction or adaptation to disability. However, cognitive impairment and, in particular, executive function, has in a number of studies been found to be strongly associated with apathy in PD (Cummings, 1993; Pluck & Brown, 2002; Starkstein et al., 1992; Taylor & Saint-Cyr, 1990). Does apathy have implications for the effectiveness of medical or psychological interventions, given its apparent independence as a predictive variable? One aspect of apathy – apparent indifference to problems arising from the PD – may relate to lack of awareness, and it would be fair to argue that the influence of anosognosia (where a person is unaware of or denies the existence of their handicap, disability or illness) may also be important to consider in psychological intervention. For example, in one investigation of the effectiveness of an intervention programme for memory and coping in a small cohort of people with dementia, patients who had a greater insight into their illness had much better outcomes (Koltai et al., 2001). Rankin et al. (2005) reported an investigation of self-awareness and personality change in people with AD and frontotemporal dementia. They concluded that, after the onset of the disease, these individuals where unable to shift from their premorbid perception of their self-image. This type of difficulty may be another factor in the apparent lack of response of depressed people with PD and other neurodegenerative disorders to treatment or other interventions (McGlynn & Schacter, 1989; Verhey et al., 1995). This is an area that deserves more investigation, to clarify the role these mechanisms have, especially in relation to cognitive function, in treatment and interventions in neurodegenerative disorders.

IMPORTANCE OF THE CAREGIVING ROLE IN PARKINSON’S DISEASE Caregiving in any chronic condition is challenging, from both a physical and emotional perspective. Carers of individuals with neurodegenerative disease share many similarities to those caring for people with other chronic conditions (see Chapters 16 and 32, this volume). However, caregivers of people with PD are also faced with a progressive illness that presents its own unique demands. The physical demands of the caregiving role in PD, particularly as the disease inevitably progresses, involves dealing with activities of daily living such as washing, dressing and feeding (Carter et al., 1998). In addition to this, carers are often faced with cognitive decline, personality changes, depression, anxiety and behavioural changes (Shulman et al., 2001) and significant restrictions in their own lives (Lawton, Moss & Duhamel, 1995). It is also worth remembering that the majority of caregivers for people with PD will be older people themselves and hence they will also be at increased risk of physical and psychological illness (Pinquart & Sorensen, 2003). In their meta-analysis, Pinquart & Sorensen reported that caregivers of individuals with chronic conditions were more likely to experience increased stress, depression, lower subjective wellbeing and self-efficacy, compared to non-carers of a similar age. Carers for depressed individuals with PD, have a 30% increased risk of caregiver depression (Aarsland et al., 1999; Meara, Mitchelmore & Hobson, 1999). Conversely, one study also revealed that increased caregiver stress can adversely affect the wellbeing of the person with PD (Davies et al., 1999). The breakdown of relationships in chronic illness is very important to consider. Pinder (1990) succinctly argued that often the role of a carer for a spouse with PD can become

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blurred, with the relationship changing from husband-wife to nurse-patient, thus increasing the likelihood of psychological stressors. Support networks, either social or psychological, of friends and neighbours in the community are also an important consideration in the management of PD. Strobe and Strobe (1996), argue that there are several psychobiological processes which can act as mediators between social support and health. Some investigations have reported that the type of social network can have a positive or harmful affect on the wellbeing and psychological functioning of a person with a neurological illness (Cohen , Teresi & Blum, 1994; Freyne, et al. 2005; Miedema & Tatemichi, 2003; Pillemer & Suitor, 1996). In PD, the role of social networks has only been investigated in one study (Hobson & Meara, 1999a). This study found that individuals living in certain social network types (described as ‘typologies’ elsewhere by Wenger, 1991) experienced differing psychosocial pressures, which could either be helpful or harmful. In the above mentioned investigation, depressive symptoms in caregivers were found to be significantly higher in family-dependent networks, where the carer alone responded to all the physical and emotional needs of a family member with PD. In less social-dependent networks, depressive symptoms were found to be mediated in caregivers who had greater integration and support from the wider community.

PSYCHOLOGICAL INTERVENTIONS FOR CAREGIVERS IN PARKINSON’S DISEASE Clinical interventions tend to focus narrowly upon the person with PD and although the role of caregivers is often acknowledged, interventions for this group have largely been neglected, despite the evidence mentioned above that caregiving in PD can impinge upon the physical and emotional well-being of the person. Ellgring et al. (1993) reported that psychological counselling, coping skills, relaxation and positive autonomy were useful interventions for people with PD and their carers. A controlled PD and carer group intervention study by Watts et al. (1999), established that the group of caregivers who received psychological sessions experienced less stress and, in general, reported better health-related quality of life. A more recent controlled investigation by Secker and Brown (2004), employing CBT in PD caregivers who reached case-ness for psychological distress, reported that the group receiving CBT had significantly reduced caregiver strain and subjective burden. The aforementioned investigations are however methodologically weakened by their small sample sizes and thus in their generalizability to clinical practice. Nevertheless, they have demonstrated that psychological models of intervention with caregivers of people with PD are possible, and that they can and do have a central role to play in its overall management. However, as Secker and Brown (2004) quite aptly argued, the evidence of the utility of psychological interventions will be of little value if they are not translated into clinical practice.

THE EXPERIENCE OF LIVING WITH PARKINSON’S DISEASE Psychological adjustment in a chronic illness such as PD can be an important predictor of the individual’s ability to control and maintain relationships, remain emotionally balanced

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and to deal with disease symptomatology (Dakof & Mendelsohn, 1989; Brod, Mendelsohn & Roberts, 1998; De Ridder, Schreurs and Bensing, 1998; Mendelsohn, Dakof & Skaff, 1995; Singer 1973, 1974a, 1974b, 1976). Most investigations have focused upon the effects of individuals’ coping styles and their associations with PD-specific variables such as disease stage, mood and health-related quality of life. Coping theory suggests that, when faced with illness, individuals manage demands either internally or externally, and that the person’s resources can be challenged or exceeded (Lazarus, 1993; Lazarus & Folkman, 1984). The adjustment and coping processes employed by people with PD are important to consider in psychological interventions. Although a number of studies have investigated the role of coping in PD, most have been conducted in relatively small samples, and in general they have been inconclusive on the actual role of coping in PD (Brod, Mandelson & Roberts, 1998; De Ridder, et al.,1998; De Ridder, Schreurs, & Bensing, 2000; Ehmann et al., 1990a; Frazier, 2002; Herrmann, Freyholdt, Fuchs, et al., 1997; Hobson, Leeds & Meara, 2001; MacCarthy & Brown, 1989; Matson, 2002; Sanders-Dewey, Mullins & Chaney, 2001; Speer, 1993). Few of the aforementioned investigations have employed the same measures of coping and all except one have been cross-sectional in design. The last point is very important as Lazarus, one of the leading coping theorists, has argued that coping is not a fixed entity, but rather that it responds and changes according to the circumstance the individual is faced with (Lazarus, 1993). Speer (1993) reports the only longitudinal study to explore the role of coping in people with PD and their caregivers. This study concluded that inferences drawn only from early assessments could potentially be misleading, because at baseline multiple relationships with patient and caregiver adjustment to the illness were found. However, when the longitudinal data were analysed, the strongest predictor revealed for effective coping was early adjustment to the illness for both patients and caregivers. The methodological weaknesses of the above studies, such as their reliance on selfreport quantitative measures of coping, may have overlooked the much richer data that probably can only be assessed qualitatively. Hodgson, Garcia and Tyndall (2004) argue that qualitative investigations are better placed to capture the experience of living with a chronic condition such as PD. Their recent qualitative study, which investigated couple relationships in PD, provided an intriguing insight into how couples perceive their interactions with more formal health service providers. This investigation found that people with PD and their caregivers felt more in control of their illness if there was less social distance and more empathetic understanding expressed by health care professionals. Delivering a more focused biopsychosocial model delivery of care will allow us to challenge and break down the barriers that exist in the traditional methods of health care provision for people with chronic disease states.

CASE STUDY The difficulty of unravelling the complexities of the motor, cognitive signs and challenging neuropsychological problems that often occur in this illness are illustrated in the following case-study. Mr M. was aged 81 years, having been diagnosed with Parkinson’s disease at the age of 58. Before the onset of PD, he had a history of anxiety and depression, and had been treated for

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HANDBOOK OF THE CLINICAL PSYCHOLOGY OF AGEING major depression. Neurosurgery – a right side thalamotomy – had been carried out when he was 65, and his motor symptoms had improved, on the left side, but there had subsequently been right-sided deterioration. Depression, delusional thoughts and anxiety were evident after the diagnosis and after the neurosurgery, and he had been a psychiatric in-patient on several occasions, including a time when he was admitted compulsorily with an acute delusional disorder. When he was 75, he was commenced on antipsychotic medication, whilst a psychiatric in-patient, and, not surprisingly, his PD and his ability to carry out daily living activities worsened. The following year, hyper-salivation was noted and his PD continued to worsen. However, during yet another psychiatric in-patient admission, his antipsychotic medication was increased, with further worsening of his PD symptoms. His worsening PD and behavioural problems, together with the frailty of his caregiver led to his admission to a nursing home at the age of 80. The nursing home staff reported that despite the antipsychotic medication, he was often very agitated, anxious, verbally abusive, attention seeking, had a restless sleep pattern, threw himself out of bed at night and was often found on the floor of his bedroom for no apparent reason. At this stage, the psychologist initially met with Mr M’s family to discuss the history of his PD and his behavioural problems. They described how, even before his depressive episodes, and diagnosis of PD, he was a very obsessive person and in particular became very anxious if his routine was altered without his knowledge. After the diagnosis of PD and the onset of continence problems he again became quite obsessive and embarrassed about his personal hygiene. Mr M was now very frail, was confined to his room and had little social interaction with other residents of the nursing home. He was virtually immobile, had severe motor symptoms of PD, was doubly incontinent and he also suffered from hyper-salivation, which was likely to be due to the antipsychotic medication he was prescribed. He also had significant communication difficulties and bradyphrenia (a slowing of thought processes). On assessing his cognition, it became quite apparent that he had significant impairments, in particular with regards to his executive function. However, he was able to explain that he felt very embarrassed about his continence problems and his hyper-salivation. He also told me that because of his PD symptoms he found it difficult to get to the bathroom and the staff often did not come to assist him when he made a request. The nursing home staff were asked to keep a diary for one week of Mr M’s behavioural problems. On examination of this it became apparent that his continence, obsessional and executive problems lay behind his behavioural problems. On discussing the outcomes of the psychological assessment with the consultant who was treating Mr M, it was suggested that the antipsychotic medication should be withdrawn slowly to try and reduce his hyper-salivation and improve his PD symptoms. Because of his severe cognitive impairments, a trial of acetycholinesterase inhibitors was suggested by his consultant, since there is some evidence to suggest that this medication can improve not only cognition but also help to resolve neuropsychiatric behaviours in PD (Aarsland et al., 2002; Fabbrini, et al., 2002; Ravina et al., 2005). On reviewing this case, many of Mr M’s earlier interventions had concentrated on the symptomatology rather than the person first. The nursing home staff were unaware of his cognitive impairments and obsessive personality, thinking that his behaviours were due to his PD and past psychiatric history. When the staff at the home were given advice on biopsychosocial approach to this gentleman’s care they then became more empathic towards him and worked together to resolve his problems. Following this advice Mr M was reassessed monthly and within six months most of his behavioural problems had resolved. During this period, as the antipsychotic medication was withdrawn, his parkinsonian motor symptoms and hyper-salivation improved along with some of his communication problems. His cognition also responded well to the acetycholinesterase inhibitors, although the withdrawal of his antipsychotic medication may also have contributed to this.

This case illustrates the importance of trying to see beyond the symptoms and to see the person. It has been argued that effective therapeutic treatments have at their core a

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person-centred approach, where interventions are adapted to suit the needs of the individual, rather than a prescriptive one (Bird, Alexopoulos & Adamowicz, 1995; see also Chapter 33, this volume).

CONCLUSIONS In 1986, Gayle Dakof & Gerald Mendelsohn, reviewed the then current research into the psychological aspects of PD and were disappointed to report that the existing research evidence into PD was heavily skewed towards the biomedical model of the illness. Have the intervening 20 years or so improved this weak evidence base? Compared to the advances made in the biological and pharmacological understanding of the disease, it would appear that the psychological aspects of PD or other neurodegenerative diseases still have not received the attention they deserve. This should not be a surprise when we consider, for example, that major grant funding bodies such as the UK Parkinson’s Disease Society (PDS), from 2001 to 2005, have only invested around 6% of their total research budget of over £9m into ‘Health and Social Care’ (Parkinson’s Disease Society, 2005). It could be argued that the emphasis towards a biomedical model in PD is appropriate, because it offers greater opportunities to find a cause, prevention, treatment and cure. However, upon closer examination, whilst superficially looking impressive, there is still limited evidence on which to base any clinical decision in PD (Sharma, 2001). Furthermore, there is a limited evidence base on how effective any intervention is for older individuals with PD, or other neurodegenerative diseases, simply because such people are less likely to enter clinical trials. Care for PD is largely pragmatic, trying to obtain benefit at an acceptable level of risk of doing harm. However, sometimes health professionals over-estimate the value of their interventions because they are bound up in what they think is beneficial for the person with PD, rather than what is achievable or relevant to that person. What is, and what is not, an appropriate psychological intervention in PD is difficult or perhaps impossible to truly quantify. The problem faced by clinicians is that many interventions in PD fall outside the scope of quantitative methodologies and furthermore are multidimensional. There are a range of psychological interventions and therapies available that no doubt could prove to be effective in assisting people to live with neurodegenerative disorders but we still lack a robust evidence base to inform our decisions. However, this is not insurmountable and much can be achieved if health and clinical psychologists become more proactive and more involved in trial design and in clinical trials for PD and other neurodegenerative disorders.

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Fabbrini, G., Barbanti, P., Aurilia, C. et al. (2002) Donepezil in the treatment of hallucinations and delusions in Parkinson’s disease. Neurological Sciences, 23; 41–43. Frazier, L.D. (2002) Stability and change in patterns of coping with Parkinson’s disease. International Journal of Ageing & Human Development, 55, 207–31. Freyne, A., Fahy, S., McAleer, A. et al. (2005) A longitudinal study of depression in old age I: Outcome and relationship to social networks. Irish Journal of Psychological Medicine, 22, 87– 93. Ghazi-Noori, S., Chung, T.H., Deane, K.H.O. et al. (2005) Therapies for depression in Parkinson’s disease. Cochrane Movement Disorders Group Cochrane Database of Systematic Reviews. Gotham, A.M., Brown, R.G. & Marsden, C.D. (1988) Depression in Parkinson’s disease: a quantitive analysis. Journal of Neurology, Neurosurgery and Psychiatry, 49, 381–9. Herrmann, M., Freyholdt, U., Fuchs, G. & Wallesch, C-W. (1997) Coping with chronic impairment: a contrastive analysis of Parkinson’s disease and stroke. Disability and Rehabilitation, 19, 6–12. Hobson, P., Gallacher, J. & Meara, J. (2005) Cross-sectional survey of Parkinson’s disease and parkinsonism in a rural area of the United Kingdom. Movement Disorders, 20, 995–8. Hobson, J.P., Leeds, L. & Meara, R.J. (2001) The coping methods of patients with Parkinson’s disease, their carers, and the associations between health related quality of life and depression. Quality in Ageing, 2, 12–19. Hobson, P. & Meara, J. (1999a) Coping and support networks for people with Parkinson’s disease, in R. Purcival & P. Hobson (eds) Parkinson’s Disease: Studies in Psychological and Social Care. BPS Books, Leicester, pp. 217–28. Hobson, P. & Meara, J. (1999b) The detection of dementia and cognitive impairment in a community population of elderly people with Parkinson’s disease by use of the CAMCOG neuropsychological test. Age and Ageing, 28, 39–44. Hobson, P. & Meara, J. (2004) Risk and incidence of dementia in a cohort of older subjects with Parkinson’s disease in the United Kingdom. Movement Disorders, 19, 1043–9. Hodgson, J.H., Garcia, K. & Tyndall, L. (2004) Parkinson’s disease and the couple relationship: a qualitative analysis. Families, Systems & Health, 22; 101–18. Hughes, A.J., Daniel, S.E., Ben-Shlomo, Y. & Lees, A.J. (2002) The accuracy of diagnosis of parkinsonian syndromes in a specialist movement disorder service. Brain,125, 861–70. Hughes, A.J., Daniel, S.E., Blankson, S. & Lees, A.J. (1993) A clinicopathological study of 100 cases. Archives of Neurology, 50, 140–8. Hughes, A.J., Daniel, S.E., Kilford, L. & Lees, A.J. (1992) Accuracy of clinical diagnosis of idiopathic Parkinson’s disease: a clinicopathological study of 100 cases. Journal of Neurology, Neurosurgery and Psychiatry, 55, 181–4. Jankovic, J. (2005) Motor fluctuations and dyskinesias in Parkinson’s disease: Clinical manifestations. Movement Disorders, 20, S11–S16. Kalayam, B. & Alexpoulos G.S. (1999) Prefrontal dysfunction and treatment response in geriatric depression. Archives of General Psychiatry, 36, 713–18. Koltai, D.C., Welsh-Bohmer, K.A. & Schmechel, D.E. (2001) Influence of anosognosia on treatment outcome among dementia patients. Neuropsychological Rehabilitation, 11, 455–75. Lawton, M.P., Moss, M. & Duhamel, L.M. (1995) The quality of daily life among elderly care receivers. Journal of Applied Gerontology, 14, 150–71. Lazarus, R.S. (1993) Coping theory and research: past, present, and future. Psychosomatic Medicine, 55, 234–47. Lazarus, R.S. & Folkman, S. (1984) Coping and adaptation, in Handbook of Behavioral Medicine (ed. W.D. Gentry). Guilford, New York, pp. 282–325. Levin, B.E., Tomer, R. & Rey, G.J. (1992) Cognitive impairments in Parkinson’s disease. Neurology Clinics, 10, 471–85. Lichter, D.G. (2001) Movement disorders and frontal-subcortical circuits, in Frontal-Subcortical Circuits in Psychiatric and Neurological Disorders (eds D.G. Lichter & J.L. Cummings). Guilford, New York, pp. 260–313. Lilienfeld, D.E., Chan, E., Ehland, J. et al. (1990) Two decades of increasing mortality from Parkinson’s disease among the US elderly. Archives Neurology, 47, 731–4. MacCarthy, B. & Brown, R. (1989) Psychosocial factors in Parkinson’s disease. British Journal of Clinical Psychology, 28, 41–52.

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13

Stroke Janet Cockburn University of Reading, Reading, UK

This chapter will cover the basic demography of stroke in the UK and the wider world at the present time, consider the nature and range of cognitive, psychosocial and affective sequelae and discuss the role of clinical psychology in stroke prevention and rehabilitation.

DEMOGRAPHICS Despite developments in health education and preventative medicine, stroke remains the third most common cause of death in developed countries (Mackay & Mensah, 2004) and is the leading cause of severe disability in the UK (Department of Health, 2006). Although a stroke can occur at any age, an estimated half of all strokes occur in people over the age of 75 (Stroke Association, 2005). These statistics suggest that, as more people live longer, the proportion of the population at risk from stroke will increase (Mackay & Mensah, 2004; Stroke Association, 2005). Stroke is defined as a clinical syndrome, vascular in origin, in which focal or global disturbance of cerebral function occurs and lasts for at least 24 hours (Intercollegiate Stroke Working Party, 2004). It is reported to affect around 15 million people annually worldwide, including between 174 and 216 people per 100,000 of the population in the UK and carries a 30% to 43% risk of recurrence within five years of first stroke (Mant, Wade & Winner, 2004). The majority of strokes (approximately 69%) result from cerebral infarction, with intracerebral and subarachnoid haemorrhages accounting for a further 19% (Wolfe et al., 2002). In addition, symptoms lasting less than 24 hours, classified as transient ischaemic attacks (TIA), affect 35 people per 100,000 of the population each year and carry a high risk of stroke within one year, possibly as high as 20% within the first month (Coull, Lovett & Rothwell, 2004). Known risk factors for stroke include smoking, excess weight and high dietary intake of salt and/or alcohol (Intercollegiate Stroke Working Party, 2004), all of which may contribute to raised blood pressure. Despite the elevated risk of recurrence for at least the next five years following a first stroke (Mant, Wade & Winner, 2004), appropriate advice on smoking cessation, diet and exercise, together with provision of timely and comprehensible information may contribute to minimization of risk. In this context clinical psychologists may have a substantial role in providing and evaluating educational support in primary Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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and secondary prevention. Patients and their relatives/carers may have a lengthy, ongoing need for post-stroke care and advice, especially with regard to cognitive and psychosocial effects that may not always be addressed in rehabilitation programmes (Bowen, Knapp, Hoffman & Lowe, 2005; British Psychological Society, 2002). Clinical psychologists may also make important contributions to assessment, design and evaluation of treatment programmes during rehabilitation and in maintaining support post-discharge for both patients and carers. The extent and time course of recovery vary considerably according to severity and type of stroke but about half of all recovery from disability is reported as occurring within the first month, with further improvement continuing more slowly over at least the next six months (Wade, 1997). Early prognostic signs of post-stroke impairments are physical, rather than cognitive, and standard outcome measures focus on measures of motor disability (British Psychological Society, 2002). For example, presence of hemianopia, severe sensory or motor loss or loss of trunk balance is likely to be noticed at an early stage, whereas difficulties in maintaining concentration or remembering incidental information may not be identified or addressed until later, if at all (McKinney et al., 2002; Wade, 2002). Recovery at the participation, or handicap, level has not been extensively investigated and may well continue for several years in the absence of a further stroke, but research on the cognitive consequences of stroke has lagged behind that on motor function (McDowd et al., 2003). Moreover, physical and cognitive recovery do not necessarily proceed in tandem, and approximately 25% of stroke survivors have been reported to develop dementia within 12 months, with higher incidence rates in older individuals (Burton et al., 2003).

CLASSIFICATION OF STROKE In addition to the broad division into strokes arising from a cerebral infarct and those resulting from cerebral haemorrhage, classification has been made at the clinical symptom level according to size and location of cerebral infarction (Bamford et al., 1991). The classification proposed by Bamford et al. describes a framework within which it is possible to determine distinctive characteristics and recovery patterns according to membership of one of four subtypes of cerebral infarction: lacunar infarcts (LACI); total anterior circulation infarcts (TACI); partial anterior circulation infarcts (PACI); or posterior circulation infarcts (POCI). These are associated with distinct patterns of outcome and prognosis. Mortality was found to be highest in the TACI group whereas patients in the POCI group were the most likely to have a recurrence of stroke within one year but also had the best chance of a good functional outcome. Although the territory affected by a lacunar infarct is often small, such infarcts often result in substantial handicap. Bamford et al. suggest that this classification is potentially useful for designing and directing therapies at the subgroup for which they will be most beneficial, as they can be implemented in the acute stage. Other approaches focus on the disability outcome level, grading according to observed functional competence. The Rankin Scale (Rankin, 1957) is a broad-based measure of overall independence that does not directly refer to the severity of the initial episode but quantifies the outcome status reached at any particular point in time and is reported to have acceptable reliability. The scale is graded from 0 representing no symptoms at all, to 5 representing severely bedridden and requiring constant nursing care. It can be used to monitor progress and to tailor therapy and support appropriately during recovery. The

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Barthel Activities of Daily Living (ADL) Index (Wade & Collin, 1988), a widely used index of disability, records what patients actually do rather than what they could do, but only addresses basic self-care activities, such as dressing and toilet use. Neither this nor the Rankin scale, therefore, gives any indication of possible interactions between cognitive competence, anxiety or depression and failure to perform an activity within an individual’s physical capability. The Functional Independence Measure (FIM), initially developed in the US (Keith et al., 1987) but now widely used in medical rehabilitation settings worldwide (cf. Daving et al., 2001; Fricke & Unsworth, 1993) includes both motor and cognitive items, thus enabling some comparison of motor and cognitive recovery, albeit at a basic level of cognitive performance.

PSYCHOLOGICAL IMPACT OF A STROKE As with any sudden and severe illness, stroke can have a major psychological impact on the person affected and his/her relatives and friends. To the impact of a potentially profound change in lifestyle and role within the family/community may be added effects on mobility and functional activity. Further complications may present from damage to cognitive systems and processes essential to attention, memory, perception, praxis, language or executive control. Subjective reports indicate that people who have experienced a stroke acknowledge changes in their cognitive performance following their stroke. In a prospective study carried out in New Zealand of patients admitted to hospital following acute stroke over a four-month period, survivors were interviewed at two weeks, six months and 24 months and issues they raised on each occasion were documented (Hanger et al., 1998). Concern over difficulties in memory and concentration became more common over time, accounting for 12% of questions at six months and 32% at two years. However, the authors surmised that this incidence might reflect an additive effect of post-stroke depression. Communication difficulties and eyesight problems were also commonly reported, suggesting that not all patients may have received appropriately targeted rehabilitation, although Hanger et al. cited evidence from an earlier study of stroke education (Evans & Held, 1984), which indicated that participation in a stroke education programme appeared to increase patients’ confidence in asking questions of health professionals. Changes in cognition and emotion were also noted by patients and their partners in the first three months following a first ever unilateral ischaemic stroke (Visser-Keizer et al., 2002). Mental slowness and memory impairment were the most commonly reported cognitive changes, being reported by half the patients and partners. Discrepancies in judgement of change, measured as the difference between patient and partner rating, were calculated and correlated with objective performance on a battery of neuropsychological tests. Neither verbal memory nor reasoning skills were found to correlate with extent of disagreement between patient and partner but patients with right-sided stroke who exhibited signs of visuospatial neglect were most likely to disagree with partners on presence and severity of change in activity levels. Partners were more likely to notice change in mental slowness and planning ability than the right-hemisphere group themselves. There was, in general, stronger evidence for disagreement on severity of emotional and cognitive change between patients with right-hemisphere lesions and their partners than in the left-hemisphere group.

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This discrepancy did not, however, appear to be associated with relative levels of depression in partners. When spouses of first-ever stroke patients were asked about their view of the future following their partner’s stroke (Forsberg-Warleby, Moller & Blomstrand, 2002), approximately one-third of responses were pessimistic but hopeful, a similar proportion optimistic but prepared for alteration, with smaller percentages being more extremely pessimistic or optimistic. In line with findings that standard outcome measures emphasize motor rather than cognitive consequences, spouses were noted to focus on sensori-motor impairment and to need to be apprised of cognitive impairments and their potential consequences.

COGNITIVE SEQUELAE OF STROKE At the impairment level, early general disorientation and confusion tends to resolve into more selective cognitive problems, which lessen in severity over the next few months, although in one US study significant residual deficits at three months post-stroke, mainly in memory, orientation, language and attention, were reported in about one-third of patients (Tatemichi et al., 1994). Assessment of cognitive status to provide early identification of cognitive impairments is carried out within the first month in only about a quarter of hospital patients in the UK (Bowen et al., 2005; Rudd et al., 1999 ). When assessments are made, they rely largely on use of brief bedside screening measures, all of which have limitations (McKinney et al., 2002). The widely used Mini-Mental State Examination (MMSE) (Folstein, Folstein & McHugh, 1975) is insensitive, especially at the upper end of the ability spectrum (McDowd et al., 2003), and is highly language dependent. Not only does that militate against patients with limited education but it also compromises assessment of the many stroke patients who have impaired motor skills or some degree of aphasia (Kwa et al., 1996). The Middlesex Elderly Assessment of Mental State (MEAMS) (Golding, 1989) is less reliant on language skills but was designed to identify gross impairment of cognition and so has limited potential for identifying subtle cognitive deficits following stroke that may, nevertheless, have lasting influence on overall functional recovery (Powell, Brooker & Papadopolous 1993). Kwa et al. (1996) investigated the suitability of the CAMCOG, the cognitive test section of the Cambridge Examination for Mental Disorders of the Elderly (CAMDEX) (Roth et al., 1986) to screen patients for cognitive impairments three months post stroke. At that stage it was found to be suitable for use even in patients with moderate aphasia, although probably overestimating cognitive abnormality in patients with more severe aphasia. Arguably, though, advice and treatment for cognitive deficits need to be initiated earlier than three months post-stroke (Hochstenbach et al., 1998). However, not only are more comprehensive neuropsychological test batteries time consuming, they may be too tiring for many patients to attempt in the early weeks after moderate to severe stroke when fatigue is a commonly reported problem (Ingles, Eskes & Phillips, 1999). Moreover, at least in the UK, many stroke care teams lack routine access to the qualified clinical psychological input necessary to administer such batteries (Bowen et al., 2005; Ebrahim & Redfern, 1999). Patel et al. (2003) cited the practical difficulty and considerable resource implications of undertaking detailed neuropsychological assessments as justification for defining cognitive impairment after stroke solely in terms of MMSE score (a cutoff at 24/30 separating individuals with impaired or normal cognition). However, even this brief screening assessment

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identified substantial prevalence of lasting cognitive impairment up to three years after first stroke. The extent of impairment identified changed little between three months and three years, dropping from 39% to 32%. However, this may reflect the lack of sensitivity of the MMSE. Although there was a trend for greater cognitive recovery after rightthan left-hemisphere stroke, possibly associated with lesser impairment of language skills, recovery was compromised by visuospatial neglect. The authors concluded that as much consideration should be given to cognitive outcome as to physical in post-stroke clinical care. Nevertheless, brief screening assessments give only limited information about the complexity and diversity of cognitive dysfunctions or their impact on long-term outcome post stroke (Hochstenbach et al., 1998). The value of neuropsychological assessment in evaluation and prediction of outcome risk factors associated with dementia has been highlighted by Desmond et al. (1998) who compared the predictive validity of a comprehensive neuropsychological test battery with that of the MMSE and the judgement of experienced neurologists. They found that, although the MMSE diagnosed the highest proportion of a sample of 244 stroke patients as demented at baseline assessment three months post stroke, dementia diagnoses based on neuropsychological assessment, specifically including evidence of memory impairment, were the best predictors of death and the only significant predictors of recurrent stroke. This remained the case after adjustment for effects of age and baseline stroke severity. The authors inferred that MMSE may overdiagnose dementia in a stroke sample whereas clinical judgement may underdiagnose it. They emphasized the value of neuropsychological assessment in facilitating early identification of patients at risk of adverse outcome and in identifying opportunities for initiation of targeted intervention, which they considered outweighed resource implications of providing access to neuropsychological assessment. Although maximal cognitive recovery from stroke has been assumed to occur within the first three months (Wade, Wood & Hewer, 1988), Desmond et al. (1996) provided evidence from comparison of change in cognitive performance of a group of stroke patients aged at least 60 years with that of a nonstroke, nondemented control group that measurable improvement continues for at least a year in some patients. Using a comprehensive battery of standard neuropsychological tests of memory, orientation, language, visuospatial skills, abstract reasoning and attention, they found 19 of 151 participants exhibited improvement in overall cognitive test summary score at one year post-stroke greater than two standard deviations (s.d.) above the mean annual change in score of the control group. Improvement was significantly related to left hemisphere infarction, independent of aphasia, and there was a trend to significance for major hemispheral stroke syndrome. Therefore, they suggested that patients with more severe infarcts involving either cerebral hemisphere may demonstrate improvement in generalized cognitive function in the longer term. It is of interest to note that eleven of the 19 patients whose performance improved significantly had a baseline cognitive summary score within two s.d. of the control mean, indicating that they would have been regarded as functioning within normal limits at initial assessment, yet their improvement still exceeded the reference group mean change. Significant and persistent slowing of information processing has been reported to underlie stroke-related changes in cognitive function (Hochstenbach et al., 1998) but to produce distinctly different profiles following left- and right- hemisphere lesions (Gerritsen et al., 2003). Hochstenbach and colleagues studied the frequency and severity of cognitive deficits, specifically orientation, memory, attention, visuospatial and visuoconstruction, language

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and arithmetic, using standard neuropsychological assessments, and compared performance after stroke with normative data and with performance of a non-stroke control group. The patients were, on average, within three months post-stroke and the group comprised a mixture of first and subsequent strokes. Demographic data were also analysed to explore their relationship with severity of cognitive dysfunction. Generalized slowing of information processing, determined by comparison of performance on timed and untimed tests, was identified as the most prominent effect, affecting over 70% of the patient group. Attentional deficits were also common, with both left- and right-sided neglect being demonstrated. Even though performance on tests of memory was least affected, substantial deficits in longterm verbal recall and in everyday memory (performance on the Rivermead Behavioural Memory Test (RBMT) (Wilson, Cockburn & Baddeley, 1985) were identified. When clinical and demographic influences were explored, performance on both verbally and nonverbally mediated tests showed significant effects of side of stroke, with performance in general better after right-sided stroke, and aphasia having a disruptive effect, even in tests making little demand on verbal response. Little influence was found for lesion type, number of previous strokes, interval between stroke and assessment or level of consciousness on initial admission to hospital.

SPECIFIC COGNITIVE SEQUELAE Although many of the evaluations of cognitive status after stroke have focused on generalized assessments that address specific domains only briefly, there is evidence that problems in some areas of cognition have more adverse impact on recovery than others, and attempts have been made to delineate their presentation, progress and treatment.

Visuospatial Neglect This condition, which enjoys a variety of titles (for example, unilateral visual neglect, visual inattention), ranks among the most common sequelae of right-hemisphere stroke and is acknowledged to have an adverse influence on functional outcome, in some cases despite full resolution of motor impairments (Halligan & Cockburn, 1983). It represents a constellation of spatial disorders characterized by failure to report, respond or orient to stimuli presented to the side contralateral to the hemispheric lesion, more commonly the right cerebral hemisphere, which can adversely affect ability to carry out essential daily activities such as dressing, eating or reading (Katz et al., 1999). In consequence, a number of assessment and rehabilitation tools have been developed over the years (Bowen & Lincoln, 2007). Many of the rehabilitation strategies or programmes that have been developed are at the single case level and so evidence of effectiveness is difficult to interpret (Bowen & Lincoln, 2007). This review identified 12 randomised controlled trials together accounting for a total of 306 participants and represented a large number of assessment tools and outcome measures. Evidence was stronger for effectiveness of cognitive rehabilitation of neglect at the impairment level but, overall, insufficient evidence had been presented to determine effectiveness at reduction of disability or influence of treatment on discharge destination. Manly (2002) has published a comprehensive review of the efficacy of rehabilitation techniques,

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together with a critique of their theoretical underpinnings. He concluded that, given the heterogeneity of defects manifest in neglect and growing evidence for associations between neglect and non-spatial attentional limitations, it remained unclear whether reduction of spatial deficits alone would be sufficient to improve overall outcome for patients. One interesting approach has been evaluated by Robertson et al. (2002) and describes a promising and relatively time-efficient treatment procedure. Based on the observation that neglect may be a variant of more generalized arousal and attentional disorder (Robertson et al., 1997), it is argued to result from breakdown of parallel activity of perceptuomotor neural maps. Rehabilitation of neglect may, therefore, be amenable to enhancement of motor activation in the affected half of somatosensory personal space, e.g. by making simple finger movements by the left hand in left hemispace, a process Robertson and colleagues term limb activation training (LAT). A number of single case and small group studies have shown positive benefits of LAT in terms of improved functional mobility and performance on standardized tests (Brown et al., 1999). Results from a single-blind controlled trial (Robertson et al., 2002) reinforce earlier findings of association between LAT and significant improvement in left-sided motor function. More importantly the improvement was noted in functional outcome as well as neuropsychological measures, and was observed to last for between 18 and 24 months.

Attention More general attentional skills form an essential prerequisite to successful everyday activities but deficits of attention are widely noted, especially in early phases following stroke (Intercollegiate Stroke Working Party, 2004). When attentional problems are reported by patients and/or their relatives they are commonly described as reduction in ability to concentrate and may be associated with reporting of memory problems (Hanger et al., 1998). Awareness of difficulties appears to grow rather than diminish over time, from 7% at two weeks post-stroke to 32% at two years (Hanger et al., 1998). This increase may suggest increasing awareness but it may also indicate the lasting nature of the problems. VisserKeizer et al. (2002) found that concentration difficulties were reported to a similar extent at three months post-stroke by patients with left or right hemisphere lesion. Formal assessment of attention early in the rehabilitation process is considered important, especially for people who appear to have difficulty in concentrating (Intercollegiate Stroke Working Party, 2004), with results being used to facilitate appropriate planning of therapy sessions and treatment programmes. The Test of Everyday Attention (Robertson et al., 1994) allows for separation of types of attentional breakdown as well as association with performance in everyday spheres. Although ‘concentration’ is widely reported by patients to be adversely affected by their stroke, experimental studies examining effects of stroke on attentional skills have confirmed the need for separate assessment of distinct components of attention. Sustained attention capacity has been identified as an important influence on functional recovery (Robertson et al., 1997), with outcome at two years post-stroke being related to performance on measures of sustained attention at two months post-stroke, a relationship that was independent of functional status at two months. In another study (Korda & Douglas, 1997) that restricted recruitment to patients with aphasia after a left hemisphere lesion, performance on one measure of verbal sustained attention did not differ significantly between patients and controls.

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In contrast, attentional capacity, examined via a choice reaction time (CRT) paradigm, did show greater deficits for the patient group. Although stroke patients were impaired relative to controls on both verbal and spatial versions of the CRT task, more of the aphasic patients performed abnormally in the verbal than the spatial task, indicating some degree of material specificity, which was not, however, associated with auditory comprehension impairment. These results indicated specificity of attention deficits and thus the need for careful assessment. Since only aphasic patients were tested, results cannot be extrapolated to other groups, but this study presents valuable evidence of measurable deficits in a patient group often excluded from research designs. The importance of not excluding this group from research is borne out by the observation by Korda & Douglas that level of attentional impairment has been identified as a prognostic factor for successful rehabilitation or return to work in individuals whose left hemisphere stroke results in aphasic deficits of auditory comprehension. Other aspects of attention have been identified as influential in outcome post-stroke. McDowd et al. (2003) investigated performance on tasks of divided attention and switching attention in patients who were at least six months post-stroke and examined correlations with physical and social outcome measures. Stroke patients were impaired compared to a control group in some aspect of all attentional measures but there were variations, with some tasks revealing little difference between the two groups but others, notably switching attention, being found very difficult by participants in the stroke group. Deficits in both divided and switching attention were related to self-reported social participation and to self-reported physical function, indicating the possibility of an influential role for attention in resumption of normal everyday activities. Despite growing evidence of the importance of attentional skills in everyday functioning, success of rehabilitation programmes for attentional disorders after stroke is so far limited. Only two small-group randomized trials (Sturm & Wilmes, 1991) met the criteria for inclusion in the Cochrane systematic review of this area (Lincoln, Majid & Weyman, 2003), neither of which demonstrated benefits of treatment at the disability/ participation level.

Memory Memory problems are frequently reported by patients after a stroke as resulting in lasting interference with their everyday lives. In the study carried out by Visser-Keizer et al. (2002), memory problems were common, although reported more frequently after left-sided lesions (49% of patients) than after right-sided lesions (36%). Memory was identified as one of the cognitive domains most likely to be impaired at three months post-stroke in a hospital sample (Tatemichi et al., 1994). Objective evidence from standardized tests of specific areas of deficit is more equivocal, possibly because of the diversity of problems under the umbrella heading of ‘memory’. Disturbance of verbal and visual memory was found to occur frequently in a population-based sample of stroke patients, with some but not all patients recovering between three and six months (Wade, Parker & Hewer, 1986). Wade et al., (1988) noted some recovery on tests of digit span and verbal recall among an unselected hospital-based sample over the first three months post-stroke. More recently, Hochstenbach et al. (1998) found over 40% of their sample to be impaired on some measures of memory, including the RBMT (Wilson et al., 1985). This finding raises the possibility that the closer the assessment of memory functioning is to real life difficulties, the better it may be at

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identifying individuals who experience problems that will interfere with their functional recovery. However, none of these studies has correlated change in memory test performance with change in functional status. As with attention, there is limited evidence from randomized control trials of successful rehabilitation of memory disorders after stroke, although single-case and small-group studies have identified approaches with potential benefits for some patients and some memory problems. For remediation to be successful it is important that it should be preceded by careful examination and identification of aspects of memory that are impaired and preserved (Intercollegiate Stroke Working Party, 2004). Majid, Lincoln and Weyman (2003) identified only one controlled trial of cognitive training for memory deficits in which at least 75% of participants had sustained a stroke (Doorhein & De Haan, 1998). This study compared strategy training with repetitive practice and reported a significant between-group difference in face-name association learning after six weeks of training. However, Majid et al. noted that no significant difference was identifiable when weighted mean differences were assessed, nor was there any subjective evidence of memory improvement. Evidence from mixedaetiology groups and from single-case or small group trials may be more positive. Wilson et al. (2001) suggest benefits from introduction and training in the use of environmental support for patients whose memory impairments impeded everyday independence. The principle behind errorless learning (EL) (Baddeley & Wilson, 1994) is potentially applicable to a number of memory domains. Based on the hypothesis that presence of declarative memory impairment precludes learning from one’s mistakes, the approach aims to provide repeated, reinforced learning of the desired information with no intrusions from incorrect or confounding material, thus, hypothetically, accessing preserved implicit memory processes. Evans et al. (2000) suggested, on the basis of a series of experiments, that tasks and situations in which retrieval from implicit memory was feasible would benefit most from errorless learning techniques but that benefits would be less evident in activities reliant on explicit formulation and retrieval of new associations. Despite evidence of success of the approach at improving retrieval of practised information among memory impaired individuals of mixed aetiology, some doubt remains over the respective contributions of implicit and explicit processes to beneficial real-world effects of EL (Page et al., 2006; Tailby & Haslam, 2003). Interest has been shown in the development of virtual environment technology for treatment of everyday memory problems that appear potentially amenable to repeated practice with limited opportunity for error. Results to date give qualified support for use of this methodology. A small-scale study of memory retraining after vascular brain injury suggested feasibility of the approach (Rose et al., 1999). Route learning by a single patient who was severely amnesic following an anterior communicating artery aneurysm was considerably more successful in the virtual than the real condition in that after training on a virtual route she followed the real route more accurately than after training on the actual route (Brooks et al., 1999). The difference was considered to be attributable partly to the greater opportunities for practice in the virtual condition and partly to the minimization of distraction compared with the real route. However, as she retained no awareness of route knowledge, the practical applications of this technique may be limited. A study by the same group of prospective memory after stroke also demonstrated the potential for virtual environments to distinguish between different components of prospective memory within a stroke group and between patients and controls (Brooks et al., 2002) but further research is needed to determine relevance to real-world behaviour.

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Apraxia Although the occurrence of complex disorders of voluntary action that are not due to sensory or motor impairment after stroke and other cerebral diseases has been acknowledged for many years (the term ‘apraxia’ being introduced by Steinthal in 1871; see McCarthy & Warrington, 1990), reliable assessment remains difficult (Tate & McDonald, 1995). The disorder can arise at a number of stages in the overall process of formulating and carrying out an action and there is no universally agreed classification system. Apraxia can occur after either right- or left-hemisphere stroke but is more common after left, where it may also coexist with aphasia. Patients may sometimes be able to perform actions automatically that they cannot reproduce to command so it is essential that assessors distinguish between impairments in voluntary and automatic actions, as well as in novel and sequential movements (Intercollegiate Stroke Working Party, 2004). Van Heugten et al. (1999) devised a standardized clinical assessment for apraxia after stroke in an attempt to discover whether two theoretically distinct categories, ideational and ideomotor, could be distinguished. Although the test discriminated well between patients clinically identified as showing apraxic symptoms and a control group, it did not produce a clear discrimination among patients between performance on imitation of gestures, intended to reflect ideational deficits, and use of objects, reflecting ideomotor dysfunction. Recommended treatments for apraxia incorporate alternative strategies such as verbalization and following a pictorial sequence (Intercollegiate Stroke Working Party, 2004). One treatment study has been published that shows some benefits of training in use of internal strategies on improvement in score on a standard Activities of Daily Living (ADL) scale (Donkervoort et al., 2001) but the benefits were only noted immediately post-therapy and there was no difference in ADL score at five months post-treatment between trained and untrained groups.

MOOD DISTURBANCE FOLLOWING STROKE Mood disorders, such as depression, anxiety and emotionalism (unpredictable and uncontrollable episodes of laughing or crying that are inappropriate to the situation) are common after stroke and are associated with poorer long-term outcome (House et al., 2001). Although specialist psychological expertise has been found valuable in discriminating between emotionalism and depression (Kneebone & Dunmure, 2000), these authors noted that research evidence was insufficiently robust to support any one psychological intervention over others. Indeed, they suggested that subtypes of post-stroke depression (PSD) might respond selectively to different specific treatment approaches. They recommended that further research needed to be directed towards investigating treatments for PSD when cognitive impairment and communication difficulties were also present. Although symptoms of depression, such as crying, feelings of hopelessness and lack of motivation may be reported after stroke, definitive diagnosis of an abnormal mood state may be difficult, especially if complicated by effects of post-stroke speech disturbance (Intercollegiate Stroke Working Party, 2004). Wade (2002) noted the difficulty of distinguishing between reactive misery following the occurrence of a stroke and clinical depression. Aben et al. (2001) reviewed research into the specificity of depression after stroke and highlighted methodological difficulties occasioned by the heterogeneity of stroke symptomatology and

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outcome and wide variations between previous studies in patient selection criteria. They also questioned the suitability of applying DSM classification of a psychiatric syndrome to identification of depression associated with a somatic disorder, such as stroke. They recommended use of careful observation and a standardized interview when assessing stroke patients for possible depression, such as the scale devised by Gainotti et al. (1997). This scale was specifically designed for stroke patients in an attempt to clarify the nature of PSD and to facilitate its identification. The scale incorporated items addressing specific symptoms and problems commonly observed in stroke patients who met DSM III-R criteria for depression. They found a continuum between minor and major forms of PSD and also reported that depressive symptomatology appeared to be associated with psychological reaction to the consequences of stroke, rather than with functional features identified in endogenous depression. Where self-report is not an option, such as in aphasic stroke, clinical observation becomes even more relevant. The Stroke Aphasic Depression Questionnaire (SAD-Q) (Sutcliffe & Lincoln, 1998) was developed to facilitate identification of depression in aphasic patients and consists of items based on observable behaviours thought to be associated with depressed mood. It was initially validated on community-dwelling patients, who were between one and two years post-stroke, a group that might be particularly vulnerable to circumstances conducive to depression, for instance loss of social activities and communication with others (Intercollegiate Stroke Working Party, 2004). Scores on the SAD-Q were found to relate significantly to other measures of depression and the questionnaire had good test-retest reliability, suggesting that it might be a useful tool where self-report responses might not be reliable. Not only is diagnosis of depression argued to be a challenging undertaking (Gordon & Hibbard, 1997) but the relationship between mood disorders and cognitive function post-stroke is complex. Depression may lead to impairment on tests of cognitive function but, in turn, acknowledgement of cognitive deficits may lead to depression. Berg et al. (2001) examined factors associated with acute PSD in 100 patients, aged between 27 and 70 years, two weeks after a first stroke. Although depressive symptoms were found to be fairly common, especially among older patients, only five participants met criteria for major depression. There was no significant difference in likelihood of depression following leftand right-hemisphere lesions and patients with aphasia recorded levels of depression no higher than those without aphasia. There was, however, an indication that following lesions in the left hemisphere, but not the right, greater severity of stroke was associated with higher levels of depression. Brainstem strokes also showed a similar association between severity and depression. In an attempt to clarify the respective contributions of cognitive impairment and depressive symptoms and effects of the complex interactions between them to overall behaviour, performance on a comprehensive neuropsychological battery was also examined. Three cognitive factors were identified, which corresponded to verbal, visual and practical abilities, with better verbal abilities being associated with lower levels of depression. Nevertheless, in this comparatively young sample, prevalence of depression after first stroke was lower than expected. Kimura, Robinson and Kosier (2000) examined cognitive response to antidepressant therapy in post-stroke mood disorders in a somewhat older sample, comparing administration of nortriptylene with placebo control. They reported improvements in MMSE score among patients whose mood improved, which they interpreted as indicating the cognitive disorder to be secondary to depression. Importantly the cognitive improvement was not related

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solely to medication because it was also seen in patients on placebo whose mood improved. In addition, there were indications that improved mood influenced recovery in two of the specific cognitive domains sampled by the MMSE: attention-calculation and recall. Nevertheless, the authors acknowledged the limitations of the MMSE as the only measure of cognitive function and suggested the need for more comprehensive neuropsychological assessment to document the range and extent of cognitive improvement.

PSYCHOSOCIAL ADJUSTMENT Clinical psychologists may play a pivotal role in psychosocial adjustment to stroke, working with relatives and carers as well as the patients themselves. Guidelines published by the British Psychological Society (2002) recommend psychological input at each of four identified stages of stroke care: prevention, immediate care, rehabilitation and long-term support. Psychologists are seen to have a role in health education pre- and post-stroke in association with primary care services, in developing and supporting interdisciplinary communication and communication between staff and patients/carers throughout rehabilitation, and in implementation of specific roles, such as identification and assessment of cognitive disorders and monitoring of mood. The reality in the UK, though, is somewhat different. Few of the now widespread dedicated units for treatment of acute stroke have regular clinical psychology input (Department of Health, 2006; Stroke Association, 2005), with percentage of stroke units having access to clinical psychology decreasing from 36% in 1998 to 28% in 2001/2 (Bowen et al., 2005). Although it is acknowledged that stroke units need a psychologist and other staff also need training in psychological issues (Department of Health, 2006), psychological expertise may be equally important over the longer-term as the impairments themselves and difficulties in adjustment to them begin to crystallize. However, clinical psychology input is also uncommon in community rehabilitation teams, even though patients, carers and staff have all been reported as noting that insufficient attention is given to psychological consequences of stroke (Department of Health, 2006). Evidence suggests that patients with acute stroke benefit more from admission to a specialist stroke unit than from being treated at home (Stroke Units Triallists Collaboration, 2004) and the majority of general hospitals now have a dedicated stroke unit, in line with Department of Health recommendations (Department of Health, 2006). Such units are designed to cater for people in the acute stages after stroke and few are geared to addressing longer-term needs of patients and carers. However, it is in these later stages that clinical psychology services may be of greatest benefit. Direct input from an experienced psychologist may not be essential to initial screening for cognitive impairments or mood disorders but it is for follow-up assessment and intervention where difficulties are identified (Bowen et al., 2005; British Psychological Society, 2002). When applied to stroke care there are specific roles for clinical psychology input at all four stages, from prevention to long-term management. Ideally each specialist stroke team would include a clinical psychologist, whose role would include regular monitoring of mood, identification of cognitive impairment plus development of rehabilitation interventions to minimize its effects and involvement in their implementation and recommendation of a treatment plan tailored to the individual’s needs and goals. In addition, they would have a commitment to overseeing psychological aspects

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of care and addressing needs of stroke patients and carers both during rehabilitation and after discharge (British Psychological Society, 2002).

GOAL-PLANNING IN REHABILITATION AFTER STROKE Stroke rehabilitation is recognized as being a complex process, necessitating coordinated input from a number of professions (see Chapter 30, this volume, for a further discussion of rehabilitation by Margaret Crossley). The input of the patient, and often relatives or carers, is also crucial to a successful outcome because each patient will have an individual combination of presenting impairments superimposed on their pre-existing personal context, with the interaction determining their behaviour and expectations (Wade, 1999). The development and implementation of models of goal planning has made substantial contributions to effectiveness of co-ordinated rehabilitation after stroke. McGrath and Adams (1999) argued that a client-centred, handicap/participation-based, interdisciplinary team approach to stroke rehabilitation not only meets the needs of the professional team but also provides clear psychological benefits for clients. They speculated, on the basis of evidence of substantial self-reported reduction in emotional distress, such as frustration, sadness and fear, during rehabilitation, that improvements in mood were mediated by effective goal planning allied to gains in competence delivered through effective interdisciplinary rehabilitation. As yet studies of effectiveness of goal planning specific to stroke are rare but evidence from randomized controlled trials in other patient groups identifies positive effects in terms of behavioural change and/or reduced dependence (Wade, 2002).

HOW WELL DOES PROVISION OF CLINICAL PSYCHOLOGY SERVICES MATCH THE PRESCRIPTION? Availability of clinical psychology services varies considerably from one country to another and in some countries, such as the US, appears to be related to mechanisms of healthcare funding (Deutsch et al., 2006). At present in the UK there is a mismatch between the recommended structure for psychological services to stroke (British Psychological Society, 2002; Department of Health, 2006; Intercollegiate Stroke Working Party, 2004) and the availability of clinical psychology input (NHS 2003). Whereas the staffing levels recommended by the British Psychological Society (2002) are two whole-time equivalent clinical psychologists and one whole-time equivalent psychology assistant for the catchment area of an ‘average’ general hospital, to include both inpatient and community services, the reality is considerably less and clinical psychologists remain in short supply (Stroke Association, 2005). Therefore, despite evidence of widespread need for psychology at all levels, from preventative measures such as interventions to promote lifestyle change or improve adherence to medication regimes, through membership of the specialist stroke rehabilitation team, to longer term liaison with social services and co-ordinators of stroke care in the community, waiting lists for psychological assessment may be long. Many patients are not currently being offered rehabilitation for problems that are predominately cognitive (Lincoln et al., 2000). Nor is long-term support consistently available to meet the ongoing

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and changing needs of patients and carers as they come to terms with long-term social and psychological effects of stroke (Department of Health, 2006).

CONCLUSIONS In conclusion, despite the considerable strides that are being made in preventative education, provision of acute treatment after stroke and the promising new medical treatments to reduce the long-term effects (Buchan, 2005), stroke remains a common cause of lasting disability, especially among older people. Considerable progress has been made in identification and assessment of lasting problems but there is, currently, less evidence for effectiveness of treatments, especially in the cognitive sphere. The need for further research and for involvement of clinical psychology services will continue for the foreseeable future.

REFERENCES Aben, I., Verhey, F., Honig, A. et al. (2001) Research into the specificity of depression after stroke: a review on an unresolved issue. Progress in Neuro-pharmacology & Biological Psychiatry, 25(4), 671–89. Baddeley, A.D. & Wilson, B.A. (1994) When implicit learning fails: amnesia and the problem of error elimination. Neuropsychologia, 32, 53–68. Bamford, J., Sandercock, P., Dennis, M. et al. (1991) Classification and natural history of clinically identifiable subtypes of cerebral infarction. Lancet, 337(8756), 1521–6. Berg, A., Palomaki, H., Lehtihalmes, M. et al. (2001) Poststroke depression in acute phase after stroke. Cerebrovascular Disorders, 12(1), 14–20. Bowen, A., Knapp, P., Hoffman, A. & Lowe, D. (2005) Psychological services for people with stroke: Compliance with the U.K. National Clinical Guidelines. Clinical Rehabilitation, 19(3), 323–30. Bowen, A. & Lincoln, N.B. (2007) Cognitive rehabilitation for spatial neglect following stroke (Cochrane Review). The Cochrane Library, Wiley, Chichester. British Psychological Society (2002) Psychological services for stroke survivors and their families: Briefing Paper no. 19. Divisions of Clinical Psychology and Clinical Neuropsychology, British Psychological Society, Leicester. Brooks, B.M., McNeil, J.E., Rose, F.D. et al. (1999) Route learning in a case of amnesia: a preliminary investigation into the efficacy of training in a virtual environment. Neuropsychological Rehabilitation, 9, 63–76. Brooks, B.M., Rose, F.D., Potter, J. et al. (2002) Assessing Stroke Patients’ Ability to Remember to Perform Actions in the Future Using Virtual Reality. Proceedings of the 4th International Conference on Disability, Virtual Reality and Associative Technology, Veszprem, Hungary. Brown, V., Walker, R., Gray, C. & Findlay, J.M (1999) Limb activation and the rehabilitation of unilateral neglect: Evidence of task-specific effects. Neurocase, 5, 129–42. Buchan, A. (2005) Stroke is an Emergency. Second Annual Oxfordshire Stroke Awareness Conference, Oxford. Burton, E., Ballard, C., Stephens, S. et al. (2003) Hyperintensities and fronto-subcortical atrophy on MRI are substrates of mild cognitive deficits after stroke. Dementia and Geriatric Cognitive Disorders, 16(2), 113–18. Coull, A.J., Lovett, J.K. & Rothwell, P.M. (2004) Population based study of early risk of stroke after transient ischaemic attack or minor stroke: implications for public education and organisation of services. British Medical Journal, 328(7435), 326.

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Daving, Y., Andren, E., Nordholm, L. & Grimby, G. (2001) Reliability of an interview approach to the Functional Independence Measure. Clinical Rehabilitation, 15(3), 301–10. Department of Health (2006) Improving Stroke Services: A Guide for Commissioners, Department of Health, www.dh.gov.uk/stroke (accessed 20 August 2007). Desmond, D.W., Moroney, J.T., Bagiella, E. et al. (1998) Dementia as a predictor of adverse outcomes following stroke: an evaluation of diagnostic methods. Stroke, 29(1), 69–74. Desmond, D.W., Moroney, J.T., Sano, M. & Stern, Y. (1996) Recovery of cognitive function after stroke. Stroke, 27(10), 1798–803. Deutsch, A., Granger, C.V., Heinemann, A.W. et al. (2006) Poststroke rehabilitation: outcomes and reimbursement of inpatient rehabilitation facilities and subacute rehabilitation programs. Stroke, 37(6), 1477–82. Donkervoort, M., Dekker, J., Stehman-Saris, F. & Deelman, B. (2001) Efficacy of strategy training in left hemisphere stroke patients with apraxia: a randomised clinical trial. Neuropsychological Rehabilitation, 11, 549–66. Doorhein, K. & De Haan, E.H.F. (1998) Cognitive training for memory deficits in stroke patients. Neuropsychological Rehabilitation, 8, 393–400. Ebrahim, S. & Redfern, J. (1999) Stroke Care – A Matter of Chance. A National Survey of Stroke Services. The Stroke Association, London. Evans, J.J., Wilson, B.A., Schuri, U. et al. (2000) A comparison of ’errorless’ and ’trial-and-error’ learning methods for teaching individuals with acquired memory deficits. Neuropsychological Rehabilitation, 10, 67–101. Evans, R.L. & Held, S. (1984) Evaluation of family stroke education. International Journal of Rehabilitation Research, 7(1), 47–51. Folstein, M.F., Folstein, S.E. & McHugh, P.R. (1975) Mini-mental state. A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12(3), 189–98. Forsberg-Warleby, G., Moller, A. & Blomstrand, C. (2002) Spouses of first-ever stroke patients: their view of the future during the first phase after stroke. Clinical Rehabilitation, 16(5), 506–14. Fricke, J. & Unsworth C. (1993) Reliability of the Functional Independence Measure with occupational therapists. Australian Occupational Therapy Journal, 40, 7–15. Gainotti, G., Azzoni, A., Razzano, C. et al. (1997) The Post-Stroke Depression Rating Scale: a test specifically devised to investigate affective disorders of stroke patients. Journal of Clinical and Experimental Neuropsychology, 19(3), 340–56. Gerritsen, M.J., Berg, I.J., Deelman, B.G. et al. (2003) Speed of information processing after unilateral stroke. Journal of Clinical and Experimental Neuropsychology, 25(1), 1–13. Golding, E. (1989) Middlesex Elderly Assessment of Mental State (MEAMS). Harcourt Assessment, The Psychological Corporation, London. Gordon, W.A. & Hibbard, M.R. (1997) Poststroke depression: an examination of the literature. Archives of Physical and Medical Rehabilitation, 78(6), 658–63. Halligan, P. & Cockburn, J. (1993) Cognitive sequelae of stroke: visuospatial and memory disorders. Critical Reviews in Physical and Rehabiitation Medicine, 5(1), 57–81. Hanger, H.C., Walker, G., Paterson, L.A. et al. (1998) What do patients and their carers want to know about stroke? A two-year follow-up study. Clinical Rehabilitation, 12(1), 45–52. Hochstenbach, J., Mulder, T., Van Limbeek, J. et al. (1998) Cognitive decline following stroke: a comprehensive study of cognitive decline following stroke. Journal of Clinical and Experimental Neuropsychology, 20(4), 503–17. House, A., Knapp, P., Bamford, J. & Vail, A. (2001) Mortality at 12 and 24 months after stroke may be associated with depressive symptoms at one month. Stroke. 32(3), 696–701. Ingles, J.L., Eskes, G.A. & Phillips, S.J. (1999) Fatigue after stroke. Archives of Physical and Medical Rehabilitation, 80(2), 173–8. Intercollegiate Stroke Working Party (2004) National Clinical Guidelines for Stroke, 2nd edn. Royal College of Physicians, London. Katz, N., Hartman-Maeir, A., Ring, H. & Soroker, N. (1999) Functional disability and rehabilitation outcome in right hemisphere damaged patients with and without unilateral spatial neglect. Archives of Physical & Medical Rehabilitation. 80(4), 379–84.

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Keith, R.A., Granger, C.V., Hamilton, B.B. & Sherwin, F.S. (1987) The functional independence measure: a new tool for rehabilitation. Advances in Clinical Rehabilitation, 1, 6–18. Kimura, M., Robinson, R.G. & Kosier, J.T. (2000) Treatment of cognitive impairment after poststroke depression: a double-blind treatment trial. Stroke, 31(7), 1482–6. Kneebone, I.I. & Dunmore, E. (2000) Psychological management of post-stroke depression. British Journal of Clinical Psychology, 39(1), 53–65. Korda, R.J. & Douglas, J.M. (1997) Attention deficits in stroke patients with aphasia. Journal of Clinical and Experimental Neuropsychology, 19(4), 525–42. Kwa, V.I., Limburg, M., Voogel, A.J. et al. (1996) Feasibility of cognitive screening of patients with ischaemic stroke using the CAMCOG. A hospital-based study. Journal of Neurology, 243(5), 405–9. Lincoln, N.B., Gladman, J.R., Berman, P. et al. (2000) Functional recovery of community stroke patients. Disability and Rehabilitation, 22(3), 135–9. Lincoln, N., Majid, MJ. & Weyman, N. (2003) Cognitive rehabilitation for attention deficits following stroke (Cochrane Review). The Cochrane Library, Update Software, Oxford. Mackay, J. & Mensah, G. (2004) The Atlas of Heart Disease and Stroke. World Health Organisation, Geneva. Majid, M.J., Lincoln, N.B. & Weyman, N. (2003) Cognitive rehabilitation for memory deficits following stroke (Cochrane Review). The Cochrane Library, Update Software, Oxford. Manly, T. (2002) Cognitive rehabilitation for unilateral neglect: review. Neuropsychological Rehabilitation, 12(4), 289–310. Mant, J., Wade, D. & Winner, S. (2004) Health care needs assessment: stroke, in Health Care Needs Assessment: The Epidemiologically Based Needs Assessment Reviews (eds A. Stevens, J. Raftery, J. Mant & S. Simpson). Radcliffe Medical Press, Oxford. McCarthy, R. & Warrington, E.K. (1990) Cognitive Neuropsychology: A Clinical Introduction. Academic Press, San Diego. McDowd, J.M., Filion, D.L., Pohl, P.S. et al. (2003) Attentional abilities and functional outcomes following stroke. Journal of Gerontology: B: Psychological Sciences and Social Sciences. 58(1), P45–53. McGrath, J.R. & Adams, L. (1999) Patient-centered goal planning: a systemic psychological therapy? Topics in Stroke Rehabilitation, 6(2), 43–50. McKinney, M., Blake, H., Treece, K.A. et al. (2002) Evaluation of cognitive assessment in stroke rehabilitation. Clinical Rehabilitation, 16(2), 129–36. NHS (2003) Changing Workforce Programme: New Ways of Working in Stroke Care. NHS, London. Page, M., Wilson, B.A., Shiel, A. et al. (2006) What is the locus of the errorless-learning advantage? Neuropsychologia 44(1), 90–100. Patel, M., Coshall, C., Rudd, A.G. & Wolfe, C.D. (2003) Natural history of cognitive impairment after stroke and factors associated with its recovery. Clinical Rehabilitation, 17(2), 158–66. Powell, T., Brooker, D.J. & Papadopolous, A. (1993) Test-retest reliability of the Middlesex Assessment of Mental State (MEAMS): a preliminary investigation in people with probable dementia. British Journal of Clinical Psychology, 32(2), 224–6. Rankin, J. (1957) Cerebral vascular accidents in patients over the age of 60. II. Prognosis. Scottish Medical Journal, 2(5), 200–15. Robertson, I.H., Manly, T., Beschin, N. et al. (1997) Auditory sustained attention is a marker of unilateral spatial neglect. Neuropsychologia. 35(12), 1527–32. Robertson, I.H., McMillan, T.M., Macleod, E. et al. (2002) Rehabilitation by limb activation training reduces left-sided motor impairment in unilateral neglect patients: a single-blind randomised control trial. Neuropsychological Rehabilitation, 12(5), 439–54. Robertson, I.H., Ridgeway, V., Greenfield, E. & Parr, A. (1997) Motor recovery after stroke depends on intact sustained attention: a 2-year follow-up study. Neuropsychology, 11(2), 290–5. Robertson, I.H., Ward, T., Ridgeway, V. & Nimmo-Smith, I. (1994) Test of Everyday Attention (TEA). Harcourt Assessment The Psychological Corporation, Oxford. Rose, F.D., Brooks, B.M., Attree, E.A. et al. (1999) A preliminary investigation into the use of virtual environments in memory retraining after vascular brain injury: Indications for future strategy? Disability and Rehabilitation, 21, 548–54.

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Roth, M., Tym, E., Mountjoy, C.Q. et al. (1986) CAMDEX. A standardised instrument for the diagnosis of mental disorder in the elderly with special reference to the early detection of dementia. British Journal of Psychiatry, 149, 698–709. Rudd, A.G., Irwin, P., Rutledge, Z. et al. (1999) The national sentinel audit for stroke: a tool for raising standards of care. Journal of the Royal College of Physicians London, 33(5), 460–4. Stroke Association (2005) Stroke Facts and Figures, Stroke Association, London, UK. Stroke Unit Trialists’ Collaboration (2004) Organised Inpatient (Stroke Unit) Care for Stroke (Cochrane Review). John Wiley & Sons, Chichester. Sturm, W. & Wilmes, K. (1991) Efficacy of a reaction training on various attentional and cognitive functions in stroke patients. Neuropsychological Rehabilitation, 1, 259–80. Sutcliffe, L.M. & Lincoln, N.B. (1998) The assessment of depression in aphasic stroke patients: the development of the Stroke Aphasic Depression Questionnaire. Clinical Rehabilitation, 12(6), 506–13. Tailby, R. & C. Haslam (2003) An investigation of errorless learning in memory-impaired patients: improving the technique and clarifying theory. Neuropsychologia, 41(9), 1230–40. Tate, R.L. & McDonald, S. (1995) What is apraxia: the clinician’s dilemma. Neuropsychological Rehabilitation, 5(4), 273–97. Tatemichi, T.K., Desmond, D.W., Stern, Y. et al. (1994) Cognitive impairment after stroke: frequency, patterns, and relationship to functional abilities. Journal of Neurology Neurosurgery and Psychiatry, 57(2), 202–7. Van Heugten, C.M., Dekker, J., Deelman, B.G. et al. (1999) A diagnostic test for apraxia in stroke patients: internal consistency and diagnostic value. Clinical Neuropsychology. 13(2), 182–92. Visser-Keizer, A.C., Meyboom-de Jong, B., Deelman, B.G. et al. (2002) Subjective changes in emotion, cognition and behaviour after stroke: factors affecting the perception of patients and partners. Journal of Clinical and Experimental Neuropsychology, 24(8), 1032–45. Wade, D.T. (1997) Stroke, in Neurological Rehabilitation (eds R. Greenwood, M.P. Barnes, T.M. McMillan & C.D. Ward). Psychology Press, Hove, pp. 451–8. Wade, D.T. (1999) Goal planning in stroke rehabilitation: why. Topics in Stroke Rehabilitation. 6(2), 1–7. Wade, D.T. (2002) Stroke rehabilitation: the evidence. Neurological Rehabilitation (2nd Edition) (eds R. Greenwood, M.P. Barnes, T.M. McMillan, C.D. Ward). Taylor & Francis, Oxford. Wade, D.T. & Collin, C. (1988) The Barthel ADL Index: a standard measure of physical disability? International Disability Studies. 10(2), 64–7. Wade, D.T., Parker, V. & Hewer, R.L. (1986) Memory disturbance after stroke: frequency and associated losses. International Rehabilitation Medicine, 8(2), 60–4. Wade, D.T., Wood, V.A. & Hewer, R.L. (1988) Recovery of cognitive function soon after stroke: a study of visual neglect, attention span and verbal recall. Journal of Neurology, Neurosurgery and Psychiatry, 51(1), 10–3. Wilson, B.A., Cockburn, J. & Baddeley, A.D. (1985) The Rivermead Behavioural Memory Test. Thames Valley Test Co, Bury St Edmunds. Wilson, B.A., Emslie, H.C., Quirk, K. & Evans, J.J. (2001) Reducing everyday memory and planning problems by means of a paging system: a randomised control crossover study. Journal of Neurology, Neurosurgery and Psychiatry, 70(4), 477–82. Wolfe, C.D., Rudd, A.G., Howard, R. et al. (2002) Incidence and case fatality rates of stroke subtypes in a multiethnic population: the South London Stroke Register. Journal of Neurology, Neurosurgery and Psychiatry. 72(2), 211–16.

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Sleep and insomnia in later life Kevin Morgan Loughborough University, Loughborough, UK

INTRODUCTION Sleep complaints are the most frequently reported of all psychological symptoms (Singleton et al., 2000) and the main reason for prescribing benzodiazepine agonists in primary care (Simon & VonKorff, 1997). Such symptoms can be indicative of a range of physical and emotional health problems (see American Academy of Sleep Medicine, 2005) but the most commonly reported, and commonly treated sleep complaints are the disorders of initiating or maintaining sleep, or the insomnias (see Sateia & Nowell, 2004). In addition to subjective dissatisfaction with sleep quality or quantity, most insomnias also share two other important characteristics: psychological processes profoundly influence them and they are most prevalent in later life. With the aim of informing the assessment and treatment of late-life insomnia this chapter first examines the origins and nature of late-life insomnia before reviewing therapeutic options.

INSOMNIA: DIAGNOSIS Insomnia is now explicitly defined in three diagnostic systems: the Classification of Mental and Behavioural Disorders (ICD-10) (World Health Organization, 1993); the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) (American Psychiatric Association, 1994); and the second edition of the International Classification of Sleep Disorders (ICSD-2) (American Academy of Sleep Medicine, 2005). While there remain differences in terminology and detail, all three classifications agree that insomnia: is characterized by complaints of difficulty getting to sleep, staying asleep or of nonrestorative sleep (despite adequate opportunities to sleep); that such symptoms are persistent, occurring at least three times per week for at least a month; and that the sleep disturbance impairs daytime (social, occupational, emotional) functioning. In addition to this concordance on symptom frequency and severity, these classificatory systems also reflect the widespread assumption that insomnias can broadly be divided into ‘primary’ (occurring in the absence Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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of accompanying physical or psychological disorders) and ‘secondary’ (resulting directly from physical or psychological disorders). However, the logical difficulty (and clinical value) of distinguishing primary and secondary insomnia symptoms, particularly among older people, has been highlighted by Lichstein (2000, 2006), while Stepanski and Rybarczyk (2006) conclude from a review of treatment outcome studies that the primary/secondary distinction ‘. . . may not be as important as previously assumed’. Where insomnia coexists with other health problems, therefore, the term ‘comorbid insomnia’ is now preferred.

INSOMNIA: NATURAL HISTORY In part, the difficulty of separating primary and secondary insomnias arises from the sometimes complex natural history of chronic sleep complaints. A useful guide through this complexity is provided by a conceptual framework (Spielman, Caruso & Glovinsky, 1987) that proposes that insomnia reflects contributions from three main sources: predisposing, precipitating and perpetuating factors. Predisposing factors collectively represent an inherent vulnerability to (or, in epidemiological terms, risk factors for) insomnia. Precipitating factors, on the other hand, are those events and phenomena, which (against a background of existing vulnerability) provoke or ‘trigger’ an insomnia episode. And finally, perpetuating factors are typically counterproductive behavioural responses to sleep disturbance which, over time, help to maintain insomnia as a chronic problem. In later life these factors operate within the context of age-related change in both the electroencephalographic (EEG) structure and the subjective experience of sleep. These important aspects of ontogenetic change will be considered in turn

SLEEP AND AGEING Structural Changes in Sleep Since the discovery of rapid eye movement (REM) sleep (Aserinsky & Kleitman, 1953), and the subsequent upsurge of interest in all-night polysomnography, numerous EEG studies have reported age-related changes in sleep architecture. A convenient way of graphically representing the EEG structure of a single sleep period (the hypnogram) is shown in Figure 14.1. The time spent in each stage is represented by horizontal lines, while the vertical lines indicate a shift from one stage to another. The five sleep stages (Stages 1, 2, 3, 4 and REM) follow each other in a cyclical fashion. Having progressed through Stages 1 to 4 (often referred to as the non-REM or NREM stages), an individual may then return, stepwise, to stage 2 before the first REM period begins, after which the same cycle starts again. People of the same age may show wide individual differences in the characteristics of their normal sleep but one of the most influential factors determining the EEG structure of adult sleep is age. From early adulthood to later life, sleep becomes more fragmented, shorter and lighter. Each of these changes can have profound implications for subjective sleep quality.

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Awake REM 1 2 3 4 1

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Figure 14.1 Sleep-stage profiles for typical younger (above) and older (below) people. Note the decrease in Stages 3 and 4 (deeper sleep), and the reciprocal increase in Stages 1 and 2 (lighter sleep) with increasing age.

Continuity of sleep Relative to that of the young, the sleep of older people is characterized by more frequent ‘shifts’ from one sleep stage to another, and more frequent episodes of intervening wakefulness during the night (Figure 14.1). Both events result in sleep that is more fragmented. Brief periods of EEG wakefulness (alpha activity) during the sleep period are normal at any age but tend to become more frequent in later life (Reynolds et al., 1985; Webb, 1982). In addition to these EEG awakenings (which can last for several minutes), ‘transient arousals’ (approximately 2–15 second bursts of alpha activity) also tend to increase with age (e.g. Boselli et al., 1998). While unrelated to behavioural awakenings, these brief episodes of alpha activity, indicative of sleep fragmentation, are positively related to daytime sleepiness as measured by the Multiple Sleep Latency Test (Carskadon et al., 1982).

Duration of sleep Resulting both from a progressive decrease in the sleep period itself (the time from sleep onset to final awakening), together with increases in the frequency and duration of intersleep arousals, the total time spent asleep declines steadily throughout adulthood. Indeed, falling from approximately 17 hours/night in neonates to an average of approximately 6 hours/night among the oldest old (Roffwarg, 1966), the duration of human sleep shows a steady decline across the lifespan whether we are growing up, or growing old. One of the most consistently reported age-related structural changes within NREM sleep is the progressive reduction of deeper slow wave sleep (SWS) (EEG sleep stages 3 and 4) and, for many older people, the virtual disappearance of stage 4 altogether (see Bliwise, 1993). These structural changes are particularly evident in spectral studies of the sleep EEG where advancing age is associated with significantly lower power densities for frequencies below 16Hz (which includes stage

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3 and 4 slow waves), and significantly higher power densities for frequencies above 18Hz (Carrier et al., 2001; Landholt & Borbely, 2001).

Depth of sleep With advancing age depth of sleep is affected both quantitatively and qualitatively. As already mentioned, the age-related diminution of deeper slow wave sleep (SWS), and reciprocal increase in stages 2 (light sleep) and 1 (drowsiness) results in sleep which is structurally lighter. In addition, studies of auditory awakening thresholds (the minimum amount of noise required to wake a sleeping person) show that during stages 2, 4, and REM older people are more easily awakened by noise than are younger people, despite reductions in the hearing sensitivity of older participants (Zepelin et al., 1984).

Conclusions Results from EEG studies indicate that, with advancing age, sleep becomes more fragmented, shorter and lighter (more easily disturbed). It is possible, however, that these apparently normative changes have been influenced (to an unknown extent) by age-related sleep disorders (particularly sleep related respiratory disturbance or period leg movements) for which, in the earlier studies, participants were not screened. Recently completed analyses (Ohayon et al., 2004; Rappelsberger et al., 2001) do indicate that the degree of age-related change in EEG sleep parameters is influenced by health status, but that the general trends of reduced continuity, duration and depth are robust, and may be considered ‘normal’.

Sleep in dementia Such ‘normal’ age-related changes in sleep structure are substantially amplified in dementia. Relative to age-matched controls, people with dementia take longer to go to sleep, stay awake longer when disturbed, tend to be more active during periods of wakefulness and are substantially more likely to sleep during the day (see Bliwise, 1993; Van Someren, 1996). In addition to this general breakdown in sleep quality, dementia is also associated with the specific disorders of ‘sundowning’ (typified by night-time agitation and wandering; Rindlisbacher & Hopkins, 1992) and REM sleep behaviour disorder (characterized by bursts of vigorous and uncontrolled limb movements during sleep, and strongly associated with Lewy body dementia; Schenk & Mahowald, 2002).

Age-related Changes in Sleep Quality: The Epidemiology of Insomnia Since the earliest population surveys conducted by McGhie and Russell (1962) in the UK, and Karacan et al. (1976) in the US, epidemiological studies have consistently shown that the prevalence of insomnia increases steadily with age (Gislason & Almqvist, 1987; Jacquinet-Salord et al., 1993; Kim et al., 2000; Mellinger et al., 1985; Ohayon, 1996, 2002), and is commonly reported by up to one in three people aged 65 and over (Foley et al., 1995;

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Maggi et al., 1998; Mellinger et al., 1985; Morgan et al., 1988). Epidemiological studies have also consistently shown that dissatisfaction with sleep is more common among older women than among older men (Foley et al., 1995; Ford & Kamerow, 1989; Kim et al., 2000; Maggi et al., 1998; Mellinger et al., 1985; Morgan et al., 1988) and is higher among lower income and lower educational attainment groups (Bixler et al., 1979; Ford & Kamerow, 1989; Habte-Gabr et al., 1991). In contrast to the abundance of prevalence data, information on the incidence of insomnia (the rate at which new cases come into existence) is scarce. A clear, though modest, age gradient in the one-year incidence of insomnia was reported by Ford and Kamerow (1989), with incident complaints rising from 5.7% among those aged 18–25, to 7.3% among those aged 65 and over. Lower estimates of incidence for the age group 65 years and over are reported by Morgan and Clarke (1997), who nevertheless found that incidence continued to show a clear age gradient after 65 years. For each year at risk in a four-year follow up, these researchers found incidence rates of 2.8%, 3.2% and 3.5% for the age groups 65–69, 70–74 and 75–79 respectively. In one of the largest studies to date Foley et al. (1999) report an overall annual incidence rate for insomnia of 5% for those aged 65+. Increasing age is also associated with changes both in the nature, and the duration of sleep complaints. Problems in getting to sleep (sleep onset problems) tend to predominate in younger insomniacs, while problems staying asleep (sleep maintenance problems) become increasingly common in later life (Gislason & Almqvist 1987; Foley et al., 1995; Maggi et al., 1998; Kim et al., 2000). Complaints of early morning awakening (EMA) also increase with age (see Morgan, 2001) but remain less common than sleep maintenance problems in older populations (see Maggi et al., 1998). Several epidemiological studies report data which indicate that symptoms of disturbed sleep are more likely to become chronic in older age groups (Byles et al., 2003; Hohagen et al., 1994; Mellinger et al., 1985).

ORIGINS OF LATE-LIFE INSOMNIA Given that, in older age, structural changes in sleep are experienced by the majority, whereas complaints of unsatisfactory sleep quality are expressed by the minority, it is reasonable to conclude that age-related change per se is not a sufficient condition for the development of insomnia. Rather, the evidence again reinforces the Spielman, Caruso & Glovinsky (1987) model in suggesting that late-life insomnia results from the triangulation of predisposing, precipitating, and perpetuating factors, examples of which are provided below.

Predisposing Factors Comprehensive (and age-independent) psychological models of chronic insomnia have recently been proposed by Harvey (2002) and Espie (2002). Both models view the person with insomnia as excessively (and selectively) attentive to sleep and the consequences of not sleeping and both highlight the impact of such attention in terms of heightened cognitive arousal. According to these models, therefore, insomnia is characterized by a distinctive psychological profile, a view supported by experimental (see Harvey, 2002; Espie 2002) and epidemiological (see Roth & Drake, 2004) evidence. Studies comparing

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the personality profiles of insomniacs and controls, for example, have found consistent differences in young (Monroe, 1967), middle-aged (Adam et al., 1986) and older (Morgan et al., 1989) participants. In all cases insomniacs have shown significantly elevated levels of anxiety and neuroticism. Such characteristics may act as risk factors for insomnia either directly, by contributing to levels of emotional arousal (Kales et al., 1983), or indirectly by lowering the threshold at which sleep is perceived to be a problem.

Precipitating Factors Not all late-life insomnia originates in later life, and many older insomniacs may be experiencing chronic symptoms whose origins can be traced to earlier adulthood. That said, there are many events and circumstances that may occur in later life, which represent a specific threat to sleep quality. Some typical examples are provided below.

Institutionalization It is well recognized in contemporary sleep research that environmental novelty (such as the first night in the EEG laboratory) results in sleep which is shorter, lighter, and more broken, a phenomenon originally described as the ‘first-night effect’ (Agnew et al., 1966; Scharf et al., 1975), and since observed in laboratory studies of older subjects (Reynolds et al., 1985). After a brief period of adaptation (say, 1–2 nights), however, sleep returns to its more ‘normal’ structure (Reynolds et al., 1985). There is no reason to suppose that such phenomena do not accompany institutional admissions and they may be interpreted (wrongly) as an ongoing sleep disturbance.

Health status Age-related increases in insomnia symptoms and hypnotic drug use are closely associated with rising levels of chronic disease with increasing age (Foley et al., 2004) suggesting that, at least in a proportion of cases, physical ill health provides a trigger for late-life insomnia. In addition, both depression (Reynolds et al., 1988) and dementia (see below) produce characteristic sleep disturbances in older people. In combination, then, these factors predict that continuing demographic ageing (see Chapter 1, this volume) will continue to increase the demand for insomnia management in later life.

Dementia care and caregiving While distressing for affected individuals, dementia-related changes in the architecture, circadian timing and quality of sleep contribute substantially to the demands of caring and are among the most frequently cited reasons for the breakdown of caregiving at home (Gilhooly, 1984; Gilleard, 1984; Kesselring et al., 2001; Pollak & Perlick, 1991; Schulz et al., 1995; see also Chapter 16, this volume). There is little doubt that caregiving, for a range of illnesses and disabilities, can disrupt normal sleeping patterns and predispose caregivers

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to insomnia. Among primary caregivers living with people with Parkinson’s disease, for example, Smith et al. (1997) report levels of sleep disturbance double that found among age matched controls. The amount of care provided also appears to increase the likelihood of disturbed sleep. The General Household Survey for Great Britain (Office of National Statistics, 2003) shows levels of reported sleep disturbance rising from 7% among those providing less than 20 hours care/week, to 47% of those providing 50 or more hours of care/week.

Perpetuating Factors: Learning and Stimulus Control As originally proposed by Bootzin (1972) and subsequently developed (see Bootzin & Epstein, 2000), stimulus control theory presumes the influence of both operant and classical learning in the onset and maintenance of insomnia. As an operant behaviour reinforced by sleep itself, sleep onset becomes associated with a number of factors (getting into bed, switching off the light, settling down to sleep), which ultimately become discriminative stimuli for reinforcement (in the presence of which sleep onset becomes more probable). In chronic insomnia, however, where long periods in bed are increasingly associated with wakefulness, connections between these stimuli and sleep onset can be significantly weakened. Furthermore, through the repeated pairing of bedroom cues with the frustration of sleeplessness, these same stimuli can now, through the mechanisms of classical conditioning, become conditioned stimuli for negative emotional responses, which antagonize and sustain episodes of insomnia. Much of the evidence to support this view comes from clinical studies (see Morin, Hauri et al., 1999).

MANAGING SLEEP AND INSOMNIA Background Since the US National Institutes of Health concluded that ‘. . . hypnotic medication should not be the mainstay of management for most of the causes of disturbed sleep’ (National Institutes of Health, 1991), the research evidence has continued to emphasize the advantages of psychological approaches to the treatment of insomnia. In an extensive systematic review of chronic insomnia management, for example, Buscemi et al. (2005) concluded that the clinical benefits of benzodiazepine agonists were almost certainly inflated by reporting bias and needed to be offset against the evidence that these drugs pose a significant risk of harm. A further detailed meta-analysis of hypnotic drug use in older patients (Glass et al., 2005) also found that the modest benefits of hypnotics (the overall effect size for sleep quality was only 0.14) were outweighed by the risk of harm. On the other hand, reviews and metaanalyses show that an average of five hours psychological treatment (combining stimulus control, progressive relaxation and cognitive approaches) produces reliable and lasting improvements in both sleep structure (as indexed by sleep latency, continuity and duration) and subjective sleep satisfaction among 70%–80% of treated adult patients (Morin et al., 1994; Morin, Hauri et al., 1999). Collectively referred to as ‘cognitive behaviour therapy for insomnia’ or CBT-I, these therapeutic approaches (often combined with sleep hygiene

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and sleep restriction procedures; see below) have also proved effective in treating older patients with (Morgan et al., 2004) and without (Morin, Colecchi et al., 1999) comorbidity. In combination with the clinical trials evidence, two other factors strongly support the case for offering CBT-I as a first-line treatment for insomnia at all ages. First, untreated insomnia degrades quality of life (Groeger, Zijlstra & Dijk, 2004; Dixon et al., 2006) and increases the risk of major depression (Ford & Kamerow, 1989; Livingston, Blizard & Mann, 1993). Secondly, recent policy and practice guidelines continue to emphasize the value of non-drug approaches to sleep management across a range of circumstances (Department of Health 1999, 2001; National Institute for Clinical Excellence, 2004a,b,c). Detailed guidance on the use of psychological treatments for insomnia in adulthood can be found in Morin and Espie (2003). More detailed accounts of assessment and treatment in late-life insomnia can be found in Lichstein and Morin (2000). What follows is a brief overview of treatment approaches and options. The interested clinician is advised to consult the specialized texts for more detail.

Assessment Internationally agreed guidelines and procedures for the assessment of insomnia have recently been published (Buysse et al., 2006). Broadly, the goal of assessment should be to capture the history, severity and daytime consequences of the presenting insomnia, and obtain insight into those traits, habits and attitudes relevant to the onset or maintenance of the problem. A range of valid and reliable scales is available for this purpose. Recommended assessments would include: the Pittsburgh Sleep Quality Index (Buysse et al., 1989), for insomnia severity; the Epworth Sleepiness Scale (Johns, 1991), for daytime sleep tendency; the fatigue severity index (Krupp et al., 1989); and the Dysfunctional Beliefs and Attitudes about Sleep (DBAS) scale (Espie et al., 2000). In addition, as sleep problems occur over time, serial assessment of sleep patterns, using self-completed daily ratings or sleep diaries (as illustrated by Figure 14.2) is essential (see Morgan et al., 2004). Such ratings, continued throughout treatment and follow-up periods, also provide valuable clinical outcome information.

Sleep Hygiene In recent years the research literature has established clear links between aspects of routine/lifestyle and sleep quality (for example, Jefferson et al., 2005). Appropriate changes in habit (or improvements in ‘sleep hygiene’), on the other hand, have been associated with significant (if modest) improvements in sleep quality among older patients with insomnia (for example, Hoch et al., 2001). As a general principle, then, regularizing daytime and night-time activities, observing habitual bedtime ‘rituals’, optimizing daytime stimulation, and minimizing daytime naps can all make a useful contribution to therapeutic outcomes. However, sleep hygiene is probably best deployed as an adjunctive rather than a ‘stand-alone’ therapy; on its own it is unlikely to deliver significant and lasting improvements (see Stepanski & Wyatt, 2003). Relevant aspects of sleep hygiene can be assessed using the Sleep Hygiene Awareness and Practices Scale (Lacks & Rotert, 1986).

After settling down, how long did it take you to fall asleep?

After falling asleep, for how long were you awake during the night in total?

At what time did you finally wake up?

At what time did you get up?

Did you take a sleeping tablet last night? (give dosage)

How much alcohol did you drink yesterday? (in Units)

How would you rate the quality of your sleep last night? 0 1 2 3 4 very poor moderate very good

How enjoyable was your sleep last night? 0 1 2 3 4 not at all moderately very

How active was your mind in bed last night? 0 1 2 3 4 not at all moderately very

How physically tense were you in bed last night? 0 1 2 3 4 not at all moderately very

How anxious were you in bed last night? 0 1 2 3 4 not at all moderately very

2

3

4

5

6

7

1

2

3

4

5

Figure 14.2 A simple daily sleep diary.

At what time did you go to bed last night?

Date of Birth:

1

Initials: Day 1

Day 2

Day 3

Day 4

Date of Day 1: Day 5

Day 6

Day 7

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Psychological Therapies A typical CBT-I ‘package’ comprises sleep hygiene, stimulus control, sleep restriction, relaxation and cognitive therapy components. These components can be delivered over 4–5 sessions (lasting 40–50 minutes), with messages reinforced by printed handouts (for examples, see Morgan et al., 2004; see also Chapter 27, this volume, for a general discussion of the application of CBT with older people).

Stimulus control procedures One of the most successful psychological methods for treating insomnia (Lacks & Morin, 1992), stimulus control includes a variety of strategies for strengthening and maintaining associations between bedroom and sleep onset. These include going to bed only when tired, using the bedroom only for sleep and sex, leaving the bedroom if sleep onset does not occur within 15–20 minutes (following either ‘lights-out’, or a nocturnal awakening), and arising at a preset time irrespective of the amount slept. While shown to be effective in the management of late-life insomnias (Morgan et al., 2004; Morin, Colecchi et al., 1999), the standard stimulus control instructions (arising from bed in the night, for example) may not be appropriate for all older people.

Sleep restriction Where insomnia is accompanied by excessive amounts of time spent in bed (excessive, that is, relative to the amount of actual sleep achieved), sleep restriction therapy has been associated with marked improvements (see Spielman, Saskin & Thorpy, 1987). As a formal therapy, sleep restriction involves an agreement with patients to reduce their time in bed so that it matches their estimated time asleep. Thus, if the patient spends nine hours in bed but, on average, achieves only seven hours of sleep, then seven hours in bed would at first be recommended. The recommended time in bed can then be reviewed weekly and varied according to the average sleep efficiency index, calculated as (Total Sleep time ÷ Time in Bed) × 100, for the preceding week. Time in bed can be increased by 15 minutes if the average sleep for the previous week (as measured by sleep diaries) exceeds 90%, or decreased by the same amount if average sleep efficiency falls below 85% (Spielman, Saskin & Thorpy, 1987).

Relaxation-based treatments Progressive relaxation (Espie et al., 1989) and autogenic training (Nicassio & Bootzin, 1974) techniques for reducing somatic tension have been found effective in the management of sleep-onset insomnia, with long-term benefits apparent at follow-up. Evaluation studies among older people with insomnia have also shown significant improvements with homebased self-administered relaxation procedures (Rybarczyk et al., 2002).

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Cognitive treatments Cognitive therapies have been found effective in the treatment of people with insomnia of all ages (see Morin, Colecchi et al., 1999; Morgan et al., 2004). Aimed primarily at reducing cognitive arousal and focusing pre-sleep mentation, therapeutic strategies vary from imagery training to paradoxical intention, and have been shown to be effective both alone, and when delivered in CBT-I ‘packages’ (see Morin, Hauri et al., 1999).

Review Not all the treatment options within the CBT-I package will benefit all patients equally. Reviews of progress during therapy, therefore, present an opportunity to consolidate experience gained, and consider remaining options. Such reviews can make good use of sleep diaries both as an outcome measure and as a vehicle for discussion and reflection with patients. Persistent insomnias at first assumed to be transient, those who show poor adherence with psychological treatments, patients with complex sleep problems who may otherwise become chronic drug users, and co-morbid insomnias where the accompanying condition, and hence the insomnia, can vary in severity may all require special attention during therapy.

CONCLUSIONS In addition to senescent changes that directly influence the structure and quality of sleep, advancing age is also associated with an increasing number of events that can influence and disturb sleep indirectly. As a result sleep problems in older age are both prevalent and complex. Academic and clinical sleep research has, in recent years, made considerable progress in identifying and clarifying some of the specific causes and correlates of disturbed sleep in later life. It is now clear that such problems, often multifactorial in origin, require a broad and flexible clinical response. Consonant with this growth in research knowledge, treatment approaches have become increasingly systematized in recent years, with due emphasis given to sleep assessments, sleep hygiene, and the appropriate deployment of psychological therapies.

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Glass, J., Lanctˆot, K.L., Herrmann, N. et al.. (2005) Sedative hypnotics in older people with insomnia: meta-analysis of risks and benefits.British Medical Journal, 331, 1169–75. Groeger, J.A., Zijlstra, F.R.H. & Dijk, D.J. (2000) Sleep quantity, sleep difficulties and their perceived consequences in a representative sample of some 2000 British adults. Journal of Sleep Research, 13(4), 359–71. Habte-Gabr, E., Wallace, R.B., Colsher, P.L. et al. (1991) Sleep patterns in rural elders: demographic, health, and psychobehavioral correlates. Journal of Clinical Epidemiology, 44, 5–13. Harvey, A.G. (2002) A cognitive model of insomnia. Behaviour Research and Therapy, 40(8), 869–93. Hoch, C.C., Reynolds, C.F., Buysse, D.J. et al. (2001) Protecting sleep quality in later life: a pilot study of bed restriction and sleep hygiene. Journals of Gerontology Series B-Psychological Sciences and SocialSciencess, 56(1), P52–P59. Hohagen, F., K¨appler, C., Schramm, E. et al.. (1994) Prevalence of insomnia in general practice attenders and the current treatment modalities. Acta Psychiatrica Scandinavica, 90, 102–8. Jacquinet-Salord, M.C., Lang, T., Fouriaud, C. et al. (1993) Sleeping tablet consumption, self reported quality of sleep, and working conditions. Journal of Epidemiology and Community Health, 47, 64–8. Jefferson, C.D., Drake, C.L., Scofield, H.M. et al. (2005) Sleep hygiene practices in a population-based sample of insomniacs. Sleep, 28(5), 611–15 . Johns, M.W. (1991) A new method for measuring daytime sleepiness – The Epworth Sleepiness Scale. Sleep, 14, 540–5 Kales, A., Caldwell, A.B., Soldatos, C.R. et al. (1983) Biopsychobehavioral correlates of insomnia II: pattern specificity and consistency with MMPI. Psychosomatic Medicine, 45, 341–56. Karacan, I., Thornby, J.I., Anch, H. et al. (1976) The prevalence of sleep disturbance in a primarily urban Florida county. Social Science & Medicine, 10, 239–44. Kesselring, A., Krulik, T., Bichsel, M. et al. (2001) Emotional and physical demands on caregivers in home care to the elderly in Switzerland and their relationship to nursing home admission. European Journal of Public Health, 11, 267–73. Kim, K., Uchiyama, M., Okawa, M. et al. (2000) An epidemiological study of insomnia among the Japanese general population. Sleep, 23, 41–7. Krupp, L.B., LaRocca, N.G., Muir-Nash, J. & Steinberg, A.D. (1989) The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Archives of Neurology, 46, 1121–3. Lacks, P. & Morin, C.M. (1992) Recent advances in the assessment and treatment of insomnia. Journal of Consulting and Clinical Psychology, 60, 586–94. Lacks, P. & Rotert, M. (1986) Knowledge and practice of sleep hygiene techniques in insomniacs and good sleepers. Behaviour Research & Therapy, 24, 365–8. Landholt, H.P. & Borbely, A.A. (2001) Age-dependent changes in sleep EEG topography. Clinical Neurophysiology, 112, 369–77. Lichstein, K.L. (2000) Secondary insomnia, in Treatment of Late-life Insomnia. (eds K.L. Lichstein & C.M. Morin). Sage, Thousand Oaks CA, pp. 297–319. Lichstein, K.L. (2006) Secondary insomnia: a myth dismissed. Sleep Medicine Reviews, 10, 3–5. Lichstein, K.L. & Morin, C.M. (eds) (2000) Treatment of Late-life Insomnia. Sage, Thousand Oaks CA. Livingston, G., Blizard, B. & Mann, A. (1993) Does sleep disturbance predict depression in elderly people – a study in inner London. British Journal of General Practice, 43(376), 445–8. Maggi, S., Langlois, J.A., Minicuci, N. et al. (1998) Sleep complaints in community-dwelling older persons: prevalence, associated factors, and reported causes. Journal of the American Geriatrics Society, 46, 161–8. McGhie, A. & Russell, S.M. (1962) The subjective assessment of normal sleep patterns. Journal of Mental Science, 108, 642–54. Mellinger, G.D., Balter, M.B. & Uhlenhuth, E.H. (1985) Insomnia and its treatment. Archives of General Psychiatry, 42, 225–32. Monroe, L.J. (1967) Psychological and physiological differences between good and poor sleepers. Journal of Abnormal Psychology, 72, 255–64. Morgan, K. (2001) Mental health factors in late-life insomnia. Review of Clinical Gerontology, 11, 71–81.

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PART THREE

Service Context

15

Values and diversity in working with older people Kate Allan Edinburgh, UK

The purpose of this chapter is to consider the themes of diversity and values in relation to work with older adults. These are issues which cross various kinds of boundaries including those between the personal domain and the professional, between personal beliefs, cultural norms and scientific ways of understanding, between the users of services and those who plan and provide them, and between the discipline of clinical psychology and others, both academic and applied. There is also a strong sense in which we have to look beyond the sphere of individual and collective professional practice, through organizational and service-related matters, to the wider social, cultural and political contexts in which we live and act. As such this chapter does not discuss a discrete area of clinical practice or service-related activity. In considering the wide-ranging subjects of values and diversity it does not offer ways of arriving at clinical formulations or describe treatment protocols, but rather raises questions and highlights issues which demand reflection and discussion. It argues that this kind of activity must take its place as part of a personal, professional, organizational and political development process.

VALUES What do we mean by the term ‘values’? One way of thinking of values is that they are about what we believe is important in life. At an individual psychological level they can be thought of as the ‘core beliefs’ or ‘fundamental assumptions’ that guide our way of making sense of the world, influence our emotional responses, and drive our behaviour. At a spiritual or religious level, values can be construed as beliefs (or questions) about the essential nature of the human (and possibly the divine), what gives meaning to individual experiences and relationships and ultimately our whole lives. Professional values are enshrined in training courses, professional practice, debates and literature, and codes of conduct. Cultural values are reflected in what we celebrate, abhor, and aspire to and what we read in newspapers and see on television. At a societal and political level, values concern how we think our society Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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should be organized and run, where influence and decision-making power should arise, how resources should be distributed and how people, both individually and collectively, should be valued and treated. In some ways values are extremely personal but as social beings our own individual values form part of a dynamic interaction with the values of others. These others include those with whom we interact on a day-to-day basis but we are also affected by those we encounter through wider social and cultural channels, and by those with whom we feel ourselves to have common interests and experiences. Our personal values are therefore always located in a cultural, political and temporal context. They are subject to change and development, for example as we age and accumulate experience, and as we encounter others who have very different perspectives and beliefs about what is important. And, as well as existing in the here and now, such shared values have a historical dimension and link us to the past.

HOW WE VALUE PERSONS We begin here with a very fundamental value-related question which has been explored at length in the dementia literature (most extensively by Kitwood, 1997), and which is also addressed in some detail in Chapter 10, this volume. The central issue here is how we value human beings, specifically how we think about the nature of a ‘person’. This issue is central to Kitwood’s influential consideration of the nature of dementia because of the commonly held perception that dementia is a condition that destroys the identity of the affected individual. Kitwood pinpointed this perception as being central to the ‘predicament’ of persons with dementia and in setting out to challenge it he drew attention to the very long tradition within Western philosophy of identifying personhood with intellectual abilities of various kinds, for example the capacity to use language, to think rationally, to make moral decisions and to take responsibility for one’s actions. The belief that in order to be fully a person an individual has to be competent in these areas has permeated Western culture to a profound extent. It has also become inextricably linked to what Post (2000) has described as our ‘hyper-cognitive culture’: the tendency to value human beings according to their ability to contribute economically to a capitalist economy, reinforcing the link between sophisticated intellectual functioning and being a valued and rewarded member of society. Clearly, the equation of personhood with cognitive ability is exclusive. People born with significant learning disabilities may never be considered fully persons, and those who have previously been intellectually able but then lose their capacities through, for example, severe mental illness, acquired brain injury or the development of dementia, stand to be deprived of their prior status and no longer perceived as persons. As a response to this problem of exclusivity, Kitwood proposed an alternative way of thinking about personhood. Instead of allying it with cognitive ability, he argued that personhood should be seen as, ‘a standing or status which is bestowed on one human being, by others in the context of relationship and social being. It implies recognition, respect and trust’ (Kitwood, 1997, p. 8). This means that all of us are only persons by virtue of being regarded as such by others: we do not carry our own personhood within us as a kind of possession and it is not a function of cognitive ability. As such we are all reliant on each other for our sense of being a person and therefore are all potentially vulnerable to having others withdraw their regard for us as persons. And, given our cultural inheritance of thinking about what makes a human being

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a person, individuals who develop dementia are especially vulnerable to such withdrawal. It is this withdrawal of regard, and not changes within the brain, which Kitwood identified as the central problem of dementia. As a corollary of this, he argued that dementia is a condition in which social and psychological factors play a much greater role than predominantly medical understandings have hitherto recognized. Against the view that dementia is a process that can be defined and explained by brain changes, Kitwood articulated the concept of ‘malignant social psychology’. This is a set of psychological and interpersonal processes that come into play when those around the individual with dementia hold certain beliefs. For example, if we believe that people with dementia no longer have any awareness of what is happening around them we are likely to treat them more like objects than as a people who are having meaningful experiences and feelings. We might then administer medication or do things to that individual without attempting to communicate in any way. If such behaviour is met with helplessness and withdrawal (or anger and aggression) in the person with dementia, these responses are likely to be explained in terms of brain damage, reinforcing the belief that the essential nature of the person within has been destroyed and so justifying similar actions in future. Kitwood argued, therefore, that the withdrawal of regard for the status of the other as a person in the full sense has a direct effect of inducing behaviour which is labelled as evidence of dementia when it is actually socially constructed and perpetuated. A classic self-fulfilling prophecy is in place. Kitwood himself described this in the following terms: ‘We can thus view the process of dementia as involving a continuing interplay between those factors that pertain to neuropathology per se, and those which are social-psychological. The nature of that interplay is dialectical’ (Kitwood, 1997, p. 50). The practice of malignant social psychology has been and continues to be the day-to-day reality for many people with dementia (Ward, 2005; 2006a,b), Kitwood’s reworking of the concept of personhood has had major ramifications for the way we think about dementia and how we relate to those with the condition. Recognizing and celebrating the person within dementia has fostered remarkable progress in finding positive ways of supporting people with dementia. These include:

r listening to and valuing the subjective experience of dementia (Clare, 2002; Harris, 2002); r constructive ways of looking at the experience and expression of emotion (Cheston & Bender, 1999);

r exploring a wide range of ways of communicating (Davis, 2005; Killick & Allan, 2001); r exploiting the positive potential of creative activities in supporting communication, confidence and self-esteem (Craig, 2004);

r developing our understanding of the nature of spirituality and dementia (Everett, 1996; Shamy, 2003). Further thinking about the nature of personhood (Hughes, Louw & Sabat, 2006) or selfhood (Sabat, 2001) in dementia continues. Hulko (2007) has emphasized the need to move towards thinking about ‘identity’ as a concept that embraces such dimensions of the person as gender, class, ethnicity and sexuality. A further development is that of moving from thinking about the ideal kind of care practice being person centred to seeing it as ‘relationship centred’ (Adams, 2005; Sheard, 2004). Driven both by the reconceptualization of dementia and government policy, we now appreciate the importance of learning about dementia directly from those who live with it

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(for example, Bryden, 2005; Henderson, 1998), and appreciate that people with dementia need to be involved and consulted as service users and research participants with views and preferences (Allan, 2001; Brooker & Surr, 2006; Innes & McCabe, 2007; Wilkinson, 2002). The emergence of social and political activism on the part of people with dementia is also gaining ground, for example through the work of organizations like the Scottish Dementia Working Group and Dementia Advocacy and Support Network International. To return to our focus on values, however, this discussion aims to highlight our responsibility in reflecting on our own values in relation to this very basic issue of how we think about personhood. Do we subscribe to the dominant view, which sees human beings as persons primarily by virtue of what they are able to do, or do we embrace a relationship-based understanding that accords human beings the special status of personhood without regard to competence and performance? Although Kitwood’s argument centred on the situation for people with dementia, these ideas have a fundamental relevance for how we think about older people generally, and the kinds of possibilities we are able to see in our work with them. We now turn to a discussion of values in relation to thinking about ageing and older people in a wider sense.

OUR ATTITUDES TOWARDS AGEING Ask anyone what comes to mind most readily when the subject of ageing and old age is raised – ask yourself – and the words most likely to be mentioned are ones like illness, loss, pain, dependency, deterioration, dementia, wrinkles and incontinence and death. The word ‘wisdom’ may eventually crop up, but the balance is overwhelmingly likely to be negative. The disposition to think about ageing and older people in negative terms, to accept the view that ‘old age is a problem’, is so universal in our culture that it is hard to imagine it being any other way. Is it not simply natural and obvious to think about ageing as a process of loss and disintegration, something to be feared and resisted? Is it not natural for older people to be seen as weak and vulnerable, and for them to be depressed because the ageing process is so inherently depressing? In order to be able to put this way of seeing into a constructive context, it is again necessary to take a step back and appreciate deeper influences on thinking about what it means to be human. This involves thinking particularly about the role of science and medicine in Western societies. Since the Renaissance, which fostered the adoption of science as the ‘gold standard’ for ways of understanding the world around us, Western societies have embraced science as the ultimate route to knowledge and understanding. As such, it is seen as being an activity which is rational and politically neutral (Cheston & Bender, 1999). Hill (1999) describes the influence of such thinking on the development of Western medicine, which has come to conceptualize the body as a kind of machine, meaning that medicine is construed as a process of fixing the machine when it becomes faulty. This entails a whole raft of assumptions about ways of understanding human experience, illness and health but of most pertinence here is the effect it has on making sense of old age. The dominant metaphor that arises is that of a machine which is inevitably and inexorably declining in function and power, to the point of complete failure. Such a ‘decline ideology’ of ageing (Gullette, 2004) ignores or relegates other ways of looking at ageing (for example, the value of subjective meanings or personal stories), or findings which do not fit the pattern, to the fringes.

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We overlook, for example, the wisdom, resourcefulness and resilience of those who have survived into old age; the potential for seeing later life as a time for continued learning and development, for deeper wellbeing and new patterns of meaning; and the contribution older people could make to their culture and society. Within the machine metaphor, ageing is approached with selective attention to those aspects which fit the expectation of deterioration and failure. Explanations for the problems older people experience are sought within this framework. This might mean that a diagnosis of depression is made, rather than seeing the person’s distress as a function of housing problems, poverty or discrimination. This tendency has been described as the medicalization of old age, and it has powerful ramifications for the kinds of possibilities and problems we see, and how we as clinical psychologists conceptualize our role in relation to people in later life. Psychology itself has also been a major force for seeing older people in negative ways. Freud has had enormous influence in promoting the assumption that old people (which for him meant people over the age of 50!) cannot change and cannot therefore benefit from psychological therapies. His legacy in this regard is to be seen everywhere, including in the attitudes of today’s trainee clinical psychologists towards the prospect of working with older people (Brodie, 2004; Lee et al., 2003), and ties in strongly with wider social perceptions of older people as rigid, slow and resistant to new ideas. Out in the everyday world the consequences of the medicalization of old age can be seen in the perception of advancing age as a kind of disease, something to be lied about or concealed; the fact that the word ‘old’ is used as an insult, and older people considered socially embarrassing and undesirable. At a societal level the rhetoric is of older people as a burden threatening to overwhelm our systems of care rather than a resource. Within this system of values, the ageing body has been the main focus of a medically dominated way of understanding old age, reinforcing an individualized, problem-focused level of understanding and intervention. The dominant discourse is of the body in old age being ugly, defective and ultimately a hopeless case. A sociological perspective on the body in later life comes from Hepworth (2000). He draws on examples from literature to elucidate the influence of our perception of our own body in the development of personal identity, how this continues into old age, and wider social practices of identifying external appearance with the moral value of persons. Whilst the practice of clinical psychology does take an interest in the relationship between the self and the body in other specialties (for example in the context of eating disorders, body dysmorphic disorder, etc.), this is not an area which has received much attention in work with older people. The association of ageing and death is another reason why older people are devalued. We live in a culture that fears and denies the fact of death, and frames it as a failure of medicine. Association with older people can be seen as a reminder to us all of the fact of our own mortality. It is easier to avoid and deny rather than to embrace this reality and allow it to affect our values, choices and behaviour. As a discipline that has developed within a medically dominated system of health and social care, practitioners of clinical psychology need to consider the extent to which this biomedical model permeates approaches to older people and their needs. The very terminology we use points to our values. It is commonplace to hear older people referred to as a homogenous category: for example, ‘the elderly’ (Falconer & O’Neill, 2007), for the users of services to be described in stigmatizing ways: ‘patients’, ‘sufferers’, and ‘victims’, and for the names of particular conditions to be used to refer to people: ‘dementias’, ‘psychotics’, and so forth. Paternalistic attitudes that position older people as vulnerable are also

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reflected in the very widespread practice of addressing people with terms such as ‘dear’ and ‘love’ (Feldman, 1999). The way we describe our own activities is also telling: we deal in case studies, management approaches and treatment plans.

AGEISM This brings us to the very important subject of ageism. As a concept ageism has been described and debated most extensively within the fields of sociology and social gerontology (Bytheway, 1995, 2005; Johnson & Bytheway, 1993) and social psychology (Nelson, 2002). Bytheway (2005) discusses both narrow and broad definitions. As an example of the former, he cites Butler’s (1975) frequently quoted definition as follows: Ageism can be seen as a process of systematic stereotyping of and discrimination against people because they are old, just as racism and sexism accomplish this for skin colour and gender. Old people are characterized as senile, rigid in thought and manner, old-fashioned in morality and skills. . . Ageism allows the younger generations to see older people as different from themselves, thus they subtly cease to identify with their elders as human beings.

Bytheway himself considers this definition of ageism to be too simplistic. He suggests a broader definition as follows: ‘[ageism is] a set of beliefs about how people vary biologically as a result of the ageing process’ (Bytheway, 2005, p. 339). This view of ageism does not single out the experiences of older people as the primary focus of ageism but rather recognizes that people of all ages are subject to expectations of how their values and behaviour should vary according to their age. It calls attention to the fact that in Western societies age is used as a fundamental basis for categorizing people and making decisions about the allocation or withholding of resources. However, Bytheway also emphasizes that such a definition of ageism generates a ‘lifelong fear of the ageing process’ (Bytheway, 2005, p. 339). Thompson (1995) conceptualizes ageism as having three distinct levels – the personal, the cultural and the structural. At the personal level it concerns our individual beliefs and feelings about our own and others’ ageing. Ageism at the cultural level is manifested in the overwhelmingly negative and stereotyped portrayal of older people in the mass media, and the fact that old age itself is widely regarded as grotesque and anxiety provoking. At the structural level evidence of ageism is seen in economic arrangements which disadvantage older people through forced retirement, low pensions and limited access to healthcare. The existence of ageism within the healthcare system is well recognized (for example, Titley, 1997; Young, 2006). This manifests in the most basic failures of care (for example, see www.ageconcern.org.uk for information about their campaign to end the malnourishment of older people in hospitals in the UK), to the basis for decision making about undertaking treatment (Bowling, 1999) and the rationale for screening programmes (Henwood, 1990). As has been noted, evidence of ageist values among trainee clinical psychologists has been reported by Brodie (2004) and Lee, Volans and Gregory (2003). Reed, Stanley and Clarke (2004) found evidence of routine ageism even in those whose role it is to empower older people and to provide advocacy and support. The segregation of younger and older people in our society is another manifestation of ageism, fostering lack of understanding of the commonalities of people of different ages (Hagestad & Uhlenberg, 2005) and some would argue that the very fact of having separate services for older people is an example of ageism (see Woods, 2003, for a discussion of this).

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Ageist values and practices are so integral to our culture that it is hard even to recognize them in ourselves and others. Macdonald and Rich (1984, p. 12) attest to this with ‘ageism is part of the air that [we] have breathed since we were born’, and ageist prejudice and behaviour is evident in older people themselves who distance themselves from others perceived as old (Minichiello, Browne & Kendig, 2000). The routine disparagement and abuse of older people is acceptable in our culture in a way that would be unthinkable if it were to be directed towards other groups, such as women, those with disabilities or black people, and we tolerate behaviour towards older people which would be considered outright abuse in other circumstances (see Chapter 18, this volume for further discussion of these issues). Again, how should we respond to these realities in our work as clinical psychologists? As well as reflecting on our own values in this regard, part of our response will be influenced by the kinds of frameworks we adopt in order to conceptualize and guide our role. By and large we are trained to make sense of people and their experiences with reference to psychological constructs like thoughts, beliefs and individual actions. Is such a framework alone adequate in our efforts to work with people who occupy such a radically devalued and marginalized position in society? Is it not incumbent upon us to operate with a greater awareness of the wider context of our activities, and for our formulations and interventions to reflect such awareness? Community clinical psychology is a branch of the discipline that is much more accustomed to thinking across boundaries and with a more explicitly political emphasis. As Orford (1992, p. 4) explains, community psychology assumes that the causes of problems are ‘an interaction, over time, between persons and social settings and systems, including the structure of social support and social power’. Thinking in terms of power, powerlessness and empowerment is integral to the approach, and implies ways of operating which are relatively unfamiliar to clinical psychologists such as working to empower organizations and communities, emphasizing prevention rather than treatment, and the sharing of psychological expertise in collaboration with nonprofessionals. From the perspective of the very young discipline of ‘aging studies’, Gullette (2004) calls for a move away from what she describes as cross-sectional research, which focuses on ‘slices of life’, at the expense of investigations which seek a more holistic understanding of the life course. She cites the sociologist Jay Gubrium as an example of an academic who works with the ‘concept of whole life’ with a particular emphasis on the value of listening to the stories of older people. Bond (2001) provides a very useful and accessible overview of sociological models for understanding the experiences of people with dementia, but these ideas have a much wider application in thinking about work with older people generally. This includes consideration of biomedical, psychological and sociological models for finding meaning in human behaviour, and more detailed discussion of a range of sociological perspectives on the sphere of health, illness and disability.

DIVERSITY Ageism is a huge and daunting issue but we also need to recognize that individuals who were born more than 65 years ago are not only members of the social category of ‘older people’. A direct consequence of thinking in stereotypes is that members of an identified group are seen as being essentially similar to one another (Nelson, 2002) and dissimilar to ourselves. And indeed we often seem to find it very difficult to look beyond the word ‘old’ and see a unique individual.

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But people over the age of 65 are also men and women. Some have disabilities, physical or learning, and some, like deaf sign language users, would reject the label of disability whilst being classified as such by most others in society. Some enjoy robust good health, others have lived with physical conditions or mental health problems all their lives. Some live in urban settings, in high-rise flats or detached properties, some in the suburban fringe, and some in the most remote and rural of localities. Some have their home in prison or other institutions and some live on the very fringes of society as travelling people or those classed as ‘homeless’. A significant proportion of older people are members of minority ethnic and linguistic groups, perhaps born in distant places in very different social and political circumstances. Some have arrived in their current locations through choice, some through hardship and some as a result of momentous and traumatizing upheavals. Some live alone, some with partners or friends, or with members of their families. Some are gay, lesbian, bisexual or transgendered and have been able to live this aspect of their identities openly, whereas others will have been forced to hide it. Older people are represented in diverse faith communities, with all the ramifications that this can have for the intimate details of life in terms of prayer, dress and diet. Some older people are wealthy and command a lot of economic power and many are poor, struggling with the basics in terms of eating well, keeping warm and maintaining a reasonable standard of living. In addition to the many aspects of diversity mentioned here, the issue of age diversity itself also deserves consideration. Would it be expected that a 25 year old would have a great deal in common in terms of values, expectations and lifestyle with that of a 55 year old? Probably not. However, there is commonly an age range of 30 years or more between the youngest users of older people’s services and the oldest. This means that the oldest current users may have grandparents born during the 1860s, have childhood memories of the First World War and be great-grandparents, whilst the youngest were young adults during the 1950s and 1960s and might count Elvis Presley, the Beatles and the Rolling Stones among their formative influences. Taking into account the fact that people in their fifties who have early onset dementia are often referred to services for older adults, it is entirely possible to encounter people who are still working and have school-age children. This is a broad range, spanning a very great deal of social change and representing a wide spectrum of personal and cultural values. The fact of wide age diversity within the older population has led to the development of ways of subdividing the category. Coleman and O’Hanlon (2004) discuss the convention of distinguishing between the ‘young-old’ (usually those aged from 65 to 75 years), the ‘oldold’ (75 to 85 years), and the ‘oldest-old’ (those over 85 years). Demographically the oldestold are the most rapidly expanding group, but their experiences are also the least understood (see Johnson & Barer (1997) for further information). This practice may be useful and reflect authentic differences between people but it also runs the risk of introducing further layers of discrimination in which the ‘young-old’ benefit from the greatest proportion of resources and expertise at the expense of the oldest-old and, as discussed by Cheston and Bender (1999), the old-old are the subject of ageist disparagement by the young-old.

FURTHER FORMS OF DISCRIMINATION The fact that diversity within the population of older people is relatively invisible also means that the realities of multiple forms of discrimination are often hidden. Not only are older

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people liable to experience prejudice and stereotyping on account of their age, but they also face a formidable set of barriers on account of the interactions of different kinds of discrimination. An older South Asian woman, for example, is at risk of ‘triple jeopardy’ (Norman, 1985), through racism, ageism and sexism and she is also likely to be the subject of assumptions regarding less visible aspects of her identity, for example in the area of heterosexism, disablism and classism. Further, the very recognition of distinct groups within the elderly population brings with it the danger that we fail to recognize the diversity within subgroups. The activation of dominant stereotypes, for example regarding the sexual conservatism of older people or the readiness of Asian families to ‘look after their own’ is liable to obscure the fact that the values, experiences and circumstances of one person, whatever their sexual, ethnic or socioeconomic categorization, will be unique, and demand an approach that avoids facile assumptions. The aspect of diversity that has attracted most attention in the provision of health and social services is that of ethnic diversity, although it has been less of a focus within the sphere of work with older people. It is recognized that the multiple types of adversity faced by people from minority groups (for example, racism, poverty, poor housing) heighten the risk of psychological distress but older people’s services are considerably underutilized by older members of minority ethnic groups in both the UK and US (Yu, 2000; Biegel & Farkas, 1997). The development of culturally sensitive and accessible services is at a relatively early stage in the UK partly because of the fact that people who migrated here in the 1950s and 1960s have only recently reached old age. Bowes and Wilkinson (2002) discuss the challenges of carrying out research with South Asian people with dementia, and the issues they describe in this context apply to service delivery and development work as well. In order to gain fuller understandings of the experiences, needs and resources of people from minority ethnic groups it is essential that we reflect on the manifestations of all forms of discrimination and their myriad interactions. We again need to set our familiar ways of understanding situations in a wider context (for example, Blakemore, 1997; Slater, 1995) and there is also much to learn from the development of antidiscriminatory approaches from the field of counselling and social work (Lago & Smith, 2003; Payne, 2005). The applicability of specific psychological models and interventions may have to be adapted considerably to be appropriate for particular individuals. Cultural diversity in all its forms influences how people think about health and illness, wellbeing and distress, and what constitutes a good way of living. Ways of assessing and intervening need to take account of these variations. This may mean challenging our usual understandings, for example, about how meaningful it is to talk about the concept of depression to someone whose culture is less individualistic than one’s own, or to consider the religious or spiritual dimensions of the nature of dementia or a psychotic illness. Our appraisal of what counts as a good outcome may also need to be questioned. Using terms like ‘independent’ or ‘self-caring’, concepts that are themselves value laden and culture specific, may be inappropriate. Pederson (2002) discusses various models of cross-cultural counselling, and recommendations from OwusuBempah and Howitt (2002) in working with people from different cultural backgrounds are useful in this respect (see also Chapter 26 for further discussion of these issues). Although women are in the majority numerically within the older population, understanding the particular psychological and sociological factors that affect the lives of older women have only recently begun to be the focus of study, whilst the experiences of older men

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have received more attention (Arber, Davidson & Ginn, 2003). The experiences of older women have been overlooked even within the feminist movement (Macdonald & Rich, 1984). Feminist perspectives on the experiences of older women, such as those discussed by Estes (2005), are not a powerful dimension of our thinking as practitioners and psychologists, and even wide-ranging and serious considerations of the psychological dimensions of women’s health (for example, Ussher, 2000) have largely overlooked this intersection. An exception comes from Baty (2000), however, who provides an account of therapeutic work which sought to promote an older woman’s understanding of the role of wider social and political factors affecting the position of women in society in her experience of distress. Ageist attitudes mean that sex and sexuality are seen as the province of young people, with the consequence that the sexuality of older people generally, and certainly that of people who have conditions like dementia, is widely denied and devalued (Archibald, 2004). Further difficulties are faced by those whose sexuality does not conform to the mainstream. The majority of older gay and lesbian people have lived not only with invisibility and the stigma of deviancy but also with the expression of their sexuality being a deemed criminal offence. Again, the experiences of older gay men and lesbians have generally been ignored even within the area of gay and lesbian studies (Allen, 2005), and we are a long way off having health and social services which respect diversity in this sphere (see Manthorpe & Price, 2003, for a discussion of the needs of gay and lesbian people with dementia). Integral to much of the foregoing discussion is the issue of power. The dominant story of older people and ageing is that of people being excluded at all levels from the personal to political. It is possible to find many examples from recent years of this situation changing, for example of pressure groups exerting influence, individual older people speaking up, and people with dementia expressing their views and calling for change, but the systematic marginalization of older people is still a major problem. What are the implications of the relative powerlessness of older people in our day-today practice? As clinicians who exercise power and enjoy respect as experts, we have particular responsibilities in this regard. Our judgements have real consequences for the way people are regarded by others, the opportunities they are given and the freedoms which are curtailed. Examining our own prejudices and blind spots in relation to ageing, cultural, sexual and social diversity, and the responsible exercise of power must, therefore, be part of an ethical stance. McGoldrick (1994) warns that ‘worse than our ignorance which could be overcome by learning, is our inability to acknowledge our ignorance’, and Clegg (1998, p. 15) also emphasizes the need for reflection which undermines the ‘rhetoric of certainty’. Proctor (2002) examines the relationship of power generally to that of (person-centred) psychotherapy, and points up the need for a much more explicit acknowledgement of the complexities inherent in this intersection, as well as a much more overt commitment to addressing sources of oppression and injustice in the wider world. Bender (2006) deals out a comprehensively negative appraisal of the contribution so far of clinical psychologists working with older adults to addressing inequities in our society and improving their quality of life. He also calls for more explicitly political activity in this regard. Leyin (2007) offers a discussion of the concept of ‘empowerment’, a term that is now commonly heard in discussion of services for adults with mental health problems, people with learning disabilities and older people. He argues for a more searching examination of the assumptions

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which often underlie the use of this term, including attention to the wider social context in which it is used and implemented.

POSITIVE POSSIBILITIES This chapter has concentrated so far on many of the problems that arise in relation to the position of older people in our society and how we might respond to these. It seems important, therefore, to conclude with a discussion that orientates us to more positive possibilities. In her discussion of ageing from the point of view of an ‘age critic’, Gullette (2004, p. 20) poses the question ‘Is it too blissful to imagine, as our goal, being able to feel more at home in the life course at every age?’ If we can conceive of such a possibility, what should be the role of clinical psychology in helping to bring it about?

‘Successful Ageing’ Towards the end of the twentieth century a huge industry has developed which promises us that the problems of old age can be solved by products such as anti-wrinkle cosmetics, dietary supplements and hair colourants. Or, as McHugh (2003) ironically describes, the purchase of a property in a newly constructed and well-appointed retirement village of Arizona. And indeed, one of the images of successful ageing in our time is that of the affluent older person who can afford an exciting and active lifestyle and the insurance premiums that go with it. An alternative conception of successful ageing is presented in Rowe and Kahn’s influential (1998) book, which proposes that the three main elements of successful ageing are freedom from disease, maintaining a high level of cognitive and physical functioning and also engagement with activities, including social activity. Vincent (2003) discusses the idea of old age as ‘liberation’. Recognizing that many of the forms of liberation he identifies depend on overcoming the problem of poverty in later life, he envisages various possibilities. These include the liberation of women from the constraints of the reproductive body, later life bringing liberation from the constraints of family life (both in terms of responsibility for children and older family members), liberation from the routine of paid work and possibilities in the area of personal development through education, new leisure pursuits and also spiritual growth. No doubt such understandings of the idea of successful ageing are partial. They need the kind of development that comes about only with a deeper appreciation of the complexities of people’s experiences, both as individuals and as members of communities, and also with the perspectives of older people themselves. Could clinical psychologists see part of their role as fostering such development?

Positive Psychology Since the late 1990s a distinctive branch has developed within academic psychology that potentially has a great deal to offer older people and those who support them. Seligman

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(2005) describes positive psychology as a ‘science of human strength’ which has developed in response to the recognition that traditional psychology has been ‘deformed’ (Seligman, 2005, p. 4) by a focus on distress and ill-health, that the science has become a ‘victimology’. Seligman argues that as a result of this bias, psychology has failed in its responsibility to seek understanding of human success, for example in a ‘fulfilled individual and a thriving community’. In common with community psychology, there is an emphasis on prevention rather than treatment and ‘the possibility that building strength is the most potent weapon in the arsenal of therapy’ (p. 3). (See Seligman, 2003, for an accessible introduction to positive psychology.) A key focus in positive psychology is that of identifying the strengths or virtues of an individual or a community, and increasing wellbeing by adapting circumstances to allow strengths to be used. For example, strengths at the individual level could include curiosity and interest in the world, capacity to love and be loved, gratitude, humour and playfulness, whilst community-level strengths might be responsibility, civility and altruism. The ‘fit’ between one’s strengths and the opportunity to use them in daily life is seen as a characterization of human happiness. The nurturance of strengths is also seen as providing a buffer against stress and difficulties, both at an individual or community level. The emphasis on strengths ties in with the work of Fredrickson (2005, p. 120), which highlights the experience of positive emotions in human happiness, both as an indicator of wellbeing and also, crucially, as a path to ‘optimal functioning, not just within the present, pleasant moment but over the long term as well’. Examples of positive emotions are joy, hope, gratitude, humour and empathy, areas of human life that more traditional varieties of psychology, including clinical psychology, have largely overlooked. Csikszentmihalyi (1990) has written extensively about the concept of ‘flow’, which brings together the domains of using strengths and experiencing positive emotion. ‘Flow’ is a term for the universal experience of human wellbeing when one is totally involved with an activity, and the usual sense of separateness from the environment and awareness of the passage of time diminish. Csikszentmihalyi argues that regular experiences of flow help to create order and good functioning within the brain and this in turn fosters good health. So far the potential of positive psychology to enhance the lives of older people has not been extensively explored, although Williamson (2005) discusses a range of issues which are commonly associated with ageing from a positive psychology perspective. Positive psychology approaches to disability (Elliott, Kurylo & Rivera, 2005) consider the potential for personal and spiritual growth through the experience of disability, and again have direct relevance for the development of new and hopeful ways of working with older people, as do perspectives on working within cultural diversity (Lopez et al., 2005).

LATER LIFE: A DEVELOPMENTAL PERSPECTIVE Very much resonating with the approach of positive psychology, although not originating within that discipline, are the greater recognition and value of understanding ageing as a process of ongoing development. Where cognitive development is concerned, psychology has a long tradition of seeing this as something that ends in early adulthood (see Gruber & Von´eche, 1977, for discussion of the work of Jean Piaget). Adulthood is conceptualized as a process of unavoidable age-regulated decline, which accelerates powerfully in later life.

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As well as failing to fit with the evidence revealed by the investigation of cognitive change in later life (see Rabbitt, 2006), such models exclude the possibility of later life as a time for continued development and cast the older person in the role of helpless victim. Cohen (2005) discusses many aspects of the positive potential of the ‘mature mind’, including that of developmental intelligence. Developmental intelligence ‘reflects the maturing synergy of cognition, emotional intelligence, judgement, social skills, life experience and consciousness’ (Cohen, 2005, p. xix), which supports far greater flexibility, stability, creativity and wellbeing than has been generally recognized, and this ties in with the work of Staudinger (1999) on the development of wisdom in old age. Perceptions of the lives of older people are dominated by negative stereotypes, which see an emotionally painful old age as a matter of certainty. However, work which has explored this domain points to a different reality. Investigation of the complex concept of quality of life in old age has revealed unexpected positive findings regarding older persons’ ratings of their own levels of ‘life satisfaction’ (Diener & Suh, 1997), and Gross et al. (1997) report findings that indicate that a diverse sample of older adults experience more complex, meaningful and more emotionally stable lives than younger people. Greater understanding of the emotional resources and strengths of older people, both individually and in the context of their communities, and the changing bases for emotional wellbeing and strong self-esteem, must take their place in the development of ways of preventing and alleviating distress. In many non-Western cultures, older people are regarded as the repository of cultural knowledge and wisdom, and the holders of special spiritual insights. Whether spirituality is understood within a specifically religious framework or not, there is the possibility of viewing later life as a time for developing a stronger sense of meaning, of finding perspectives which integrate apparently incompatible positions, and for offering guidance and help to younger members of the community. Work in the areas of humour (Lefcourt, 2005), humility (Tangney, 2005), compassion (Cassell, 2005) and forgiveness (McCullough & Witvliet, 2005) could invite us to develop our understanding of the possibilities of working with older people. Perhaps such exploration could also help us with the ultimate spiritual challenge of facing death, our own and that of those we love.

WHERE NOW? Where does all this leave the practice of clinical psychology with older adults? The purpose of this chapter has been to point up issues and problems on which we do not normally focus and that might take us well outside of the comfort zone of our usual knowledge base and skills. The growing evidence base for development of various kinds into late adulthood, together with the orientation and insights of positive psychology and the communityfocused, politically-aware discipline of community psychology certainly pose a challenges to the distress and illness-focus of clinical psychology generally, and in work with older adults specifically. We might well feel threatened but in this discomfort we should also find a strong sense of invitation and possibility too. Combining the strengths of the various branches of psychology, setting these in the context of a stronger appreciation of the social and political context of our work, and applying them to the situation of older people today, in all their complexity, diversity, richness and resourcefulness stand to point up extremely powerful ways forward.

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Our commitment to this enterprise could bring benefits to a large and growing section of the population, not least ourselves as we grow and develop into the older adults of tomorrow.

REFERENCES Adams, T. (2005) From person-centred to relationship-centred care. Generations Review, 15(1) 4–7. Allan, K. (2001) Communication and Consultation: Exploring Ways for Staff to Involve People with Dementia in Developing Services. The Policy Press, Bristol. Allen, K.R. (2005) Gay and Lesbian Elders, in The Cambridge Handbook of Age and Ageing (ed. M Johnson). Cambridge University Press, Cambridge. Arber, S., Davidson, K. & Ginn, J. (2003) Gender and Ageing: Changing Roles and Relationships. Open University Press, Buckingham. Archibald, C. (2004) Sexuality and dementia: beyond the pale? In Dementia and Social Inclusion: Marginalised Groups and Marginalised Areas of Dementia Research, Care and Practice (eds A. Innes, C. Archibald & C. Murphy). Jessica Kingsley, London. Baty, F. (2000) Working with older women: developments in clinical psychology, in Women’s Health: Contemporary International Perspectives (ed. J. Ussher). BPS, Leicester. Bender, M. (2006) To have and have not, PSIGE Newsletter, 96, 23–6. Biegel, D.E. & Farkas, K.J. (1997) Barriers to the use of mental health services by African-American and Hispanic elderly persons. Journal of Gerontological Social Work, 29(1), 23–44. Blakemore, K. (1997) From minorities to majorities: perspectives on culture, ethnicity and ageing in British gerontology, in Critical Approaches to Ageing and Later Life (eds A. Jamieson, S. Harper & C. Victor). Open University Press, Buckingham. Bond, J. (2001) Sociological perspectives, in A Handbook of Dementia Care (ed. C. Cantley). Open University Press, Buckingham. Bowes, A. & Wilkinson, H. (2002) South Asian people with dementia: research issues, in The Perspectives of People with Dementia: Research Methods and Motivations (ed. H. Wilkinson). Jessica Kingsley, London. Bowling, A. (1999) Ageism in cardiology. British Medical Journal, 319, 1353–5. Brodie, C. (2004) Trainee clinical psychologists’ attitude towards adults over the age of 65 and their interest to work with older adults – pre-teaching, post-teaching and post-placement. PSIGE Newsletter, 87, 20–5. Brooker, D. & Surr, C. (2006) Dementia Care Mapping: Principles and Practice. University of Bradford, Bradford. Bryden, C. (2005) Dancing with Dementia: My Story of Living Positively with Dementia. Jessica Kingsley, London. Butler, R. (1975) Why Survive? Being Old in America. Harper & Row, New York. Bytheway, B. (1995) Ageism. Open University Press, Buckingham. Bytheway, B. (2005) Ageism, in The Cambridge Handbook of Age and Ageing (ed. M. Johnson). Cambridge University Press, Cambridge. Cassell, E.J. (2005) Compassion, in Handbook of Positive Psychology (eds C.R. Snyder & S.J. Lopez). Oxford University Press, Oxford. Cheston, R. & Bender, M. (1999) Understanding Dementia: The Man with the Worried Eyes. Jessica Kingsley, London. Clare, L. (2002) Developing awareness about awareness in early-stage dementia: the role of psychosocial factors. Dementia, 1, 295–312. Clegg, J. (1998) Critical Issues in Clinical Practice. Sage, London. Cohen, G. (2005) The Mature Mind: The Positive Power of the Aging Brain. Basic Books, New York. Coleman, P.G. & O’Hanlon, A. (2004) Ageing and Development: Theories and Research. Arnold, London.

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Craig, C. (2004) Reaching out with the arts: meeting the person with dementia, in Dementia and Social Inclusion: Marginalised Groups and Marginalised Areas of Dementia Research, Care and Practice (eds A. Innes, C. Archibald & C. Murphy). Jessica Kingsley, London. Csikszentmihalyi, M. (1990) Flow. Harper & Row, New York. Davis, B.H. (2005) Alzheimer Talk, Text and Context: Enhancing Communication. Palgrave Macmillan, New York. Diener, E. & Suh, E.M. (1997) Subjective wellbeing and age: an international analysis, in Annual Review of Gerontology and Geriatrics, Volume 17 (eds K.W. Schaie & M.P. Lawton). Springer, New York, pp. 304–24. Dobson, R. (2005) Age discrimination denies elderly people a ‘dignified death’. British Medical Journal, 330(7503), 1288. Elliott, T.R., Kurylo, M. & Rivera, P. (2005) Positive growth following acquired physical disability, in Handbook of Positive Psychology (eds C.R. Snyder & S.J. Lopez). Oxford University Press, Oxford. Estes, C.L. (2005) Women, ageing and inequality: a feminist perspective, in The Cambridge Handbook of Age and Ageing (ed. M Johnson). Cambridge University Press, Cambridge. Everett, D. (1996) Forget Me Not: The Spiritual Care of People with Alzheimer’s, Inkwell Press, Edmonton, Alberta. Falconer, M. & O’Neill, D. (2007) Out with ‘the old’, elderly, aged. British Medical Journal, 334, 316. Feldman, S. (1999) Please don’t call me ‘dear’: older women’s narratives of health care. Nursing Inquiry, 6(4), 269–76. Fredrickson, B. (2005) Positive emotions, in Handbook of Positive Psychology (eds C.R. Snyder & S.J. Lopez ). Oxford University Press, Oxford. Gross, J.J., Carstensen, L.L., Pasupathi, M. et al. (1997) Emotion and aging: experience, expression and control. Psychology and Aging, 12, 590–9. Gruber, H.E. & Von´eche, J.J. (1977) The Essential Piaget. Routledge, London. Gullette, M. (2004) Aged by Culture. Chicago University Press, Chicago IL. Hagestad, G. & Uhlenberg, P. (2005) The social separation of old and young: a root of ageism, Journal of Social Issues, 61(2) 343–60. Harris, P.B. (2002) The Person with Alzheimer’s Disease: Pathways to Understanding the Experience. Johns Hopkins, Baltimore MD. Henderson, C.S. (1998) Partial View: An Alzheimer’s Journal. Southern Methodist University Press, Dallas TX. Henwood, M. (1990) No sense of urgency: age discrimination in health care, in Age: The Unrecognised Discrimination: Views to Provoke a Debate (ed. E. McEwen).Age Concern, London. Hepworth, M. (2000) Stories of Ageing. Open University Press, Buckingham. Hill, T.M. (1999) Western medicine and dementia, in Dementia Care: Developing Partnerships in Practice (eds T. Adams & C. Clarke). Bailli`ere Tindall, London. Hughes, J., Louw, S. & Sabat, S. (2006) Dementia: Mind, Meaning and the Person, Oxford University Press, Oxford. Hulko, W. (2007) Social science perspectives on dementia research: intersectionality, in Dementia and Social Inclusion: Marginalised Groups and Marginalised Areas of Dementia Research, Care and Practice (eds A. Innes, C. Archibald & C. Murphy). Jessica Kingsley, London. Innes, A. & McCabe, L. (2007) Evaluation in Dementia Care. Jessica Kingsley, London. Johnson, C.L. & Barer, B.M. (1997) Life Beyond 85 Years: The Aura of Survivorship. Springer, New York. Johnson, J. & Bytheway, B. (1993) Ageism: concept and definition, in Ageing and Later Life (eds J. Johnson & R. Slater). Sage, London. Killick, J. & Allan, K. (2001) Communication and the Care of People with Dementia. Open University Press, Buckingham. Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Open University, Buckingham. Lago, C. & Smith, B. (2003) Anti-discriminatory Counselling Practice. Sage, London. Lee, K., Volans, P.J. & Gregory, N. (2003) Trainee clinical psychologists’ views on recruitment to work with older people. Ageing and Society, 23, 83–97

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Lefcourt, H.M. (2005) Humour, in Handbook of Positive Psychology (eds C.R. Snyder & S.J. Lopez). Oxford University Press, Oxford. Leyin, A. (2007) Empowerment: implied assumptions. Clinical Psychology Forum, 170 (February), 7–10. Lopez, S.J., Prosser, E.C., Edwards, L.M. et al. (2005) Putting positive psychology in a multicultural context, in Handbook of Positive Psychology (eds C.R. Snyder & S.J. Lopez). Oxford University Press, Oxford. Macdonald, B. & Rich, C. (1984) Look Me In the Eye: Old Women, Aging and Ageism. The Women’s Press, London. Manthorpe, J. & Price, E. (2003) Out of the shadows. Community Care, (3–9 April) 40–1. McCullough, M.E. & Witvliet, C.V. (2005) The psychology of forgiveness, in Handbook of Positive Psychology (eds C.R. Snyder & S.J. Lopez). Oxford University Press, Oxford. McGoldrick, M. (1994) Culture, class, race and gender. Human Systems, 5, 131–54. McHugh, K. (2003) Three faces of ageism: society image and place. Ageing and Society, 23(2) 165–85. Minichiello, V., Browne, J., Kendig, H. (2000) Perceptions and consequences of ageism: views of older people. Ageing and Society, 20(3) 253–78. Nelson, T.D. (2002) Ageism: Stereotyping and Prejudice against Older Persons, The MIT Press, Cambridge MA. Norman, A. (1985) Growing Old in a Second Homeland, Centre for Policy on Ageing, London. Orford, J. (1992) Community Psychology: Theory and Practice. John Wiley & Sons, Chichester. Owusu-Bempeh, K. & Howitt, D. (2002) Addressing cultural diversity, addressing racism. The Psychologist, 15(2), 293–5. Payne, M. (2005) Modern Social Work Theory: A Critical Introduction. Palgrave Macmillan, Basingstoke. Pederson, P.B. (2002) Counselling Across Cultures. Sage, London. Post, S.G. (2000) The Moral Challenge of Alzheimer’s Disease, 2nd edn. Johns Hopkins University Press, Baltimore MA. Proctor, G. (2002) The Dynamics of Power in Counselling and Psychotherapy: Ethics, Politics and Practice. PCCS Books, Hay-on-Wye. Rabbitt, P. (2006) Tales of the unexpected – 25 years of cognitive gerontology. The Psychologist, 19(11), 674–7. Reed, J., Stanley, D. & Clarke, C. (2004) Health, Well-being and Older People. The Policy Press, Bristol. Rowe, J.W. & Kahn, R.L. (1998) Successful Aging. Dell, New York. Sabat, S.R. (2001) The Experience of Alzheimer’s Disease: Life Through a Tangled Veil. Blackwell, Oxford. Seligman, M.E.P. (2003) Authentic Happiness: Using the New Positive Psychology to Realize your Potential for Lasting Fulfilment. Nicholas Brealey, London. Seligman, M.E.P. (2005) Positive psychology, positive prevention and positive therapy, in Handbook of Positive Psychology (eds C.R. Snyder & S.J. Lopez). Oxford University Press, Oxford. Shamy, E. (2003) A Guide to the Spiritual Dimension of Care for People with Alzheimer’s Disease and Related Dementia: More Than Body, Brain and Breath. Jessica Kingsley, London. Sheard, D. (2004) Bringing relationships into the heart of dementia care. Journal of Dementia Care, 12(3), 22–4. Slater, R. (1995) The Psychology of Growing Old. Open University Press, Buckingham. Staudinger, U.M. (1999) Older and wiser? Integrating results on the relationship between age and wisdom-related performance. International Journal of Behavioral Development, 23, 641–64. Tangney, J.P. (2005) Humility, in Handbook of Positive Psychology (eds C.R. Snyder & S.J. Lopez). Oxford University Press, Oxford. Thompson, N. (1995) Age and Dignity: Working with Older People. Arena, London. Titley, J. (1997) Healthcare Rights for Older People: The Ageism Issue. Age Concern, London. Ussher, J.M. (2000) Women’s Health: Contemporary International Perspectives. BPS, Leicester. Vincent, J. (2003) Old Age. Routledge, London. Ward, R. (2005) What is dementia care? Dementia is communication. Journal of Dementia Care, 13(6), 16–17.

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Ward, R. (2006a) What is dementia care? An invisible workload. Journal of Dementia Care, 14(1), 28–30. Ward, R. (2006b) What is dementia care? Seeing patterns – making sense. Journal of Dementia Care, 14(2), 22–3. Wilkinson, H. (2002) The Perspectives of People with Dementia: Research Methods and Motivations. Jessica Kingsley, London. Williamson, G.M. (2005) Aging well: outlook for the twenty-first century, in Handbook of Positive Psychology (eds C.R. Snyder & S.J. Lopez). Oxford University Press, Oxford. Woods, R. (2003) What’s so different about older people? Clinical Psychology and Psychotherapy, 10, 129–32. Young, J. (2006) Ageism in services for transient ischaemic attack and stroke. British Medical Journal, 333, 508–9. Yu, W.K. (2000) Chinese Older People: A Need for Social Inclusion in Two Communities. The Policy Press, Bristol.

16

Family caregiving: research and clinical intervention Steven H. Zarit Pennsylvania State University, Pennsylvania, US

and Anne B. Edwards Purdue University Calumet, Indiana, US

INTRODUCTION Of all the demographic changes of the last century, perhaps the one that has altered the characteristics of the human life span most is the increase in life expectancy. Old age was once a rare event, achieved by a very small proportion of each generation; now, reaching age 65, 75 and even 85 is commonplace and increasingly expected. Not only do people survive to old age but most of them live healthy and satisfying lives. At the same time, old age brings an increasing risk of chronic disease and disability. With more people living to old age, more ultimately need assistance at some point in their lives. When an older person needs help, it is usually given by family members. They do this despite major changes in structure and roles of contemporary families that potentially limit the amount of assistance they can provide, such as increased participation of women in the workforce and smaller family size. While families have always assisted their elders, they are doing so now more often and for longer periods of time. Even in the Scandinavian countries, where public policies encouraged the development of formal service systems to free younger generations to participate fully in the workforce, family care continues to have a predominant and, as the population ages, an ever more important role in assisting elders (Shea et al., 2003; Thorslund, 1991). As the number of people providing care to an older relative has increased, attention has focused on the often challenging, demanding circumstances involved in caregiving. Much of the research on family caregiving has, in fact, been concerned with identifying stresses or burdens of family care and the risk and protective factors for stress. These studies form a strong foundation for clinical intervention as they identify potentially modifiable aspects of the situation. A smaller, but important, clinical research literature has identified promising

Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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approaches that can help families manage care of their elderly relatives more effectively while experiencing less strain. In the following sections, we shall review the demographic changes that have brought about the prominence of family caregiving and then identify potential resources and limitations for families in meeting the challenge of caring for elderly relatives. We shall then examine research that documents the stresses associated with family caregiving and examines individual differences in the experience of stress. Finally, we shall explore promising clinical interventions to assist caregiving families.

BASIC DEFINITIONS For the purposes of this chapter, we have adopted a functional definition of caregiving as interactions in which one family member is helping another on a regular (daily, or nearly so) basis with tasks that are necessary for independent living. Included are ‘instrumental’ tasks, such as managing finances, transportation, shopping, cooking and housework, as well as ‘personal’ tasks, such as bathing, dressing and toileting. In the case of disabilities involving dementia, the ‘care recipient’ may require some ongoing supervision. A relationship develops into caregiving when an older person becomes dependent on another’s help to complete tasks and another family member (such as a spouse or child) provides or arranges for this assistance. In other words, caregiving constitutes a change in ongoing patterns of exchange and assistance in response to a new disability, which results in one or more people providing regular help to the elder. We want to differentiate caregiving from the ordinary, ongoing exchanges of help and support that characterize most families. Those in older married couples provide mutual and often complementary assistance to one another, for instance when sharing household tasks, and they may help and receive help from children. These ordinary and routine exchanges may be a source of conflict in the family or be experienced as burdensome but they need to be understood as distinct from a situation in which assistance is provided because of mental and physical frailties. Likewise, we mean something different from longstanding enmeshed family relationships where, for example, a daughter may feel that her mother places an excessive emotional burden on her. The daughter may present herself as a caregiver who is overburdened and emotionally drained by her mother’s demands, although the character of their interactions has probably not changed much over the years. These situations are important clinically because they represent the ageing of ingrained family conflicts but they should be carefully differentiated, both in research and in clinical practice, from those circumstances in which new dependencies have developed. Of course, new dependencies may reawaken or intensify longstanding family problems. Nonetheless, we feel this distinction between longstanding and changing patterns of exchange is important and basic. In research, it allows us to identify how changes in the family result in new problems and stresses. Clinicians, in turn, will make more effective interventions if they differentiate between acute disruptions that may be amenable to practical interventions and longstanding relationship problems that may be highly resistant to change. Incorrectly calling an interaction ‘caregiving’ can precipitously shift the power in the family, needlessly worsening the ‘care recipient’s’ wellbeing and access to resources. This distinction between usual family exchanges and caregiving can, of course, sometimes be difficult to make. In fact, AARP conducted a telephone survey of over 4,000 Americans, and 15% met the criteria for caregiving but did not identify themselves as a caregiver.

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Likewise, 10% self-identified as caregivers but did not meet the study criteria (Kutner, 2001). This discrepancy may exist in part because some patterns of help may develop gradually over a period of many years, such as when a spouse gradually takes over household tasks in response to increasing disability. By later life most couples probably have some specialization of functioning that developed in response to minor disabilities, such as when a husband opens jars for a wife who has arthritis in her wrist and fingers. When there is no dramatic change or event, these situations may go on for many years, with the ‘caregiver’ making gradual accommodations to the other person’s disability and perhaps never labelling themselves as ‘caregiver’. As this discussion implies, people will identify themselves as caregivers in different ways and in response to different situations. In fact, identification of oneself as a caregiver and socialization into the role is a major transition for families, with implications for how they subsequently adapt to the demands placed on them (Aneshensel et al., 1995; Gaugler, Zarit & Pearlin, 2003). For this chapter, we shall limit our discussion to caring for people who need regular assistance with daily living tasks, recognizing that some of the carers may not identify themselves as such, and that some people nominating themselves as caregivers may not meet this definition. Within the definition of ‘caregiver’ lies an important distinction between ‘primary’ and ‘secondary’ caregivers. In most caregiving situations, one family member assumes the major responsibility for assisting a disabled elder. When the elder lives in the same household with a relative, whether a spouse, child, or someone else, that person almost always takes on most caregiving activities. If an elder lives alone, proximity and kin relationship usually determine who takes on the main caregiving role, with daughters being most likely to assume this responsibility (National Alliance for Caregivers, 2005; Stone, Cafferata & Sangl, 1987). Other family members may assist the primary caregiver by providing occasional relief or by taking the responsibility for specific tasks, such as when a son handles his mother’s finances but her daughter manages daily care needs (for example, Gaugler et al., 2003). Most of what is known about caregiving, to date, concerns primary caregivers. How patterns of care develop, change and become differentiated and change over time, as well as the potential for conflict between primary and secondary caregivers, are important, but relatively overlooked issues.

THE DEMOGRAPHICS OF CAREGIVING Caring for a dependent elderly person has become a focus of research as well as a salient issue for society, primarily as a result of the major demographic changes that have taken place in the industrialized world. The first is the dramatic change in life expectancy over the last 100 years. For people in the United States, life expectancy at birth in 1900 was 48.3 years for men and 51.1 years for women. This figure increased rapidly throughout the twentieth century. By 2000, life expectancy at birth had reached an all-time high of 74 years for men and 80 for women (Kinsela & Velkoff, 2001). During this period, the proportion of older people in the population increased from 4% to 13%. The group of oldest old, people 80 and over, is increasing at a faster rate than other age groups (Kinsela, 1996; see also Chapter 1, this volume). The increase in life expectancy means that more people live to ages when they are likely to need the assistance of a caregiver. While many older people are healthier than those of earlier cohorts, significant numbers have chronic illnesses and need assistance with

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everyday activities. In England and Wales, for example, Melzer and his colleagues found that 1.3 million people over the age of 65 were cognitively or physically impaired (Melzer et al., 1999). This need for assistance is strongly associated with age. Among persons 65 to 69 years of age in the United States, only 8.1% needed help with at least one activity of daily living, while this figure rose to 34.9% for those over the age of 85 (McNeil, 2001). Many caregivers are required to meet the needs of so many people with physical and cognitive limitations. Using a probability sample drawn from Medicare records in the US, Stone and her colleagues (Stone, Cafferata & Sangl, 1987) projected that approximately 2.2 million caregivers were providing unpaid care to 1.6 million noninstitutionalized disabled elderly people with one or more activities of daily living (ADL) limitations. Combining the findings of a number of large surveys, Brody (1985) estimated that 5 million people were caring for their parents at any one point in time. This does not take into account the number of people caring for a spouse, which is the most frequent form of caregiving. One recent study has reported a much higher number of caregivers than previously thought. Using a random digit dial technique, the National Alliance for Caregivers (2005) estimated that 33.9 million people in the US, or just over 16% of the population of people 18 and over, were providing unpaid care to at least one person over the age of 50. The increase in the number of people needed to care for an elderly relative has an especially high impact on women. Sixty-seven per cent of those who provided assistance to someone in another household and 56% of those who provided assistance to someone in their household were women (US Bureau of the Census, 1990). Daughters are more likely to be the primary caregiver for an impaired parent than are sons. When a daughter is the primary caregiver, male siblings provide much less additional care than female siblings, when proximity to the primary caregiver is held constant (Brody et al., 1989). Even in networks where there is only one adult child to provide care, the participation of only males is about half that of only females (Coward & Dwyer, 1990). Among married couples, husbands and wives tend to spend similar amounts of time caring for their spouse but husbands receive more help from informal sources than do wives (Enright, 1991). Most care of frail elders continues to be provided by family caregivers and other informal carers. Less than 15% of all caregiving days in the community are provided by formal services (Doty, Liu & Wiener, 1985). Sixty per cent of family caregivers of people not in a nursing home in the US use no paid help of any kind (National Alliance for Caregivers, 2005).

CAREGIVING AT A DISTANCE In addition to changes in the proportion of older people in the population, other social trends are adding to the challenges and complexities of family caregiving. Cohabitation of parents with their adult children has been decreasing across the world, even in traditional Confucian societies like Japan and South Korea (Sundstr¨om, 1993). Furthermore, children tend to live at an increasing distance from parents, a trend noted both in the US (Siegel, 1980; Soldo, 1980) and in the EU (Hermanova, 1995). The most recent estimates are that 15% of caregivers in the US have to travel over an hour to their care recipient’s home (National Alliance for Caregivers, 2005). The family caring from a distance faces special challenges. They may have difficulty obtaining accurate information about daily problems their parent faces and deciding when an intervention is necessary. While local resources may be available to help older people

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remain in their own homes, children living at some distance may find it hard to identify and monitor home help or other services. Sometimes, parents and children will disagree over the need for help. As an example, children may hire a helper, such as a homemaker, to provide some assistance in the home, only to have the parent dismiss this person. When questions about parents’ ability to remain in their own home are raised, children living at a distance may consider moving them to their own community, or into their own home. This decision is exceedingly difficult because all of the available alternatives are likely to have drawbacks. Failure to relocate someone who needs help may result in serious injury or even death. Arranging for and monitoring help at a distance can be time consuming and frustrating for children. On the other hand, moving parents from their long-term residence may take them away from friends and other supports. While they may be able to perform common daily activities in a familiar setting, such as shopping, housework or even driving, they may not be able to adjust to the move to a new community and may lose some functional competencies. Children may unreasonably expect that disabled parents will be able to reestablish an independent lifestyle after a move, making new friends and initiating new activities, only to find that the parent has become increasingly dependent on them for social needs and other activities. Parents may even insist that they could go back to their homes again, increasing the feelings of tension and guilt in their children.

CHANGES IN FAMILY SIZE AND STRUCTURE Another change in family structure that affects the lives of older people and their adult children alike is the decrease in family size. This means that fewer children share the responsibility for care. As part of this trend, there has been a dramatic increase in the number of one-child families. The proportion of one-child families in the US reached a high of 40% in the 1980s (Falbo, 1984). In Europe, the percentage of one-child families rages from 10% in Finland to 25% in the UK (Tomassini et al., 2004). This means that many children are the sole family member available to provide help when their elderly parent needs assistance. Only children tend to feel more responsibility for their parents (Barnes, Given & Given, 1992) because they know that arrangements for the care of their parents rest on their shoulders. This knowledge can be beneficial. Adult children with siblings feel abandoned by other members of the family and have a greater negative reaction to caregiving than children with no siblings (Barnes, Given & Given, 1992). Caregivers’ expectation of assistance by other family members shapes how well they adjust to the caregiving role. In the case of only children, the expectation of help from others is not there, which explains the lack of negative adjustment.

RESEARCH ON FAMILY CAREGIVING PROCESSES AND OUTCOMES Models of Caregiving Stress Caregiving for a disabled elder has been identified as one of the most stressful and disruptive events in the family life cycle. Many adverse and unwanted consequences have

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been identified. Caregiving can interfere with other aspects of one’s life, such as when a daughter’s care to an ailing mother interferes with her employment or takes time away from her husband or children. Many caregivers experience strong negative emotions, such as anger and depression. Furthermore, these stresses are usually not short term. A person may provide help to an older relative over a period of several years, responding to a changing and increasingly complex set of challenges. Even events such as placement of the elder into an institution, or the elder’s death, which are typically viewed as releasing caregivers from their burdens, present new, potentially disruptive stressors (Gaugler et al., 2004; Rosenthal & Dawson, 1991; Schulz et al., 2004; Zarit & Whitlatch, 1992). We want to emphasize that caregiving is a complex, multifaceted process. There is no one pattern of caregiving or adaptation, nor are there distinct stages. Rather, caregiving is characterized by a great deal of individual variation at every point in the process. Families differ in their willingness and ability to take on this role, in their feelings of affection and obligation to the elder and in the resources available to them for carrying out the role. Likewise, elders requiring help vary considerably in the type of their disability, their personalities and past history of relationships with potential caregivers and their willingness to accept help. Simple reductionist concepts such as stages of caregiving do not do justice to the wide variability of situations. Nor can the impact of caregiving be captured by a single dimension of burden or other construct. Perhaps the most critical point to emerge from research on family caregiving is that people adapt quite differently to similar situations. Feelings of distress or burden are influenced, but not dictated, by characteristics of the elder’s disease or disability; they are also not determined solely by the type or amount of care required. Some family caregivers assisting an elder with severe disabilities report little or no problems or distress, while others who are caring for someone with modest degrees of disability indicate they are overwhelmed or burned out by the care they are giving (Aneshensel et al., 1995; Zarit, Reever & BachPeterson, 1980). These individual patterns become further differentiated over time. Some caregivers adapt successfully to chronic, deteriorating conditions, whereas others become progressively more burdened (Aneshensel et al., 1995; Arai et al., 2002; Townsend et al., 1989; Zarit, Todd & Zarit, 1986). To explore these individual differences, researchers have used theories of stress and adaptation (Lazarus & Folkman, 1984; Pearlin & Schooler, 1978). A particularly useful approach, the stress process model, was developed by Pearlin and his associates (Aneshensel et al., 1995; Pearlin et al., 1990) to guide their longitudinal investigation of family care of people with dementing illnesses. This model, which is shown in Figure 16.1, will be used to organize findings from the research literature. By identifying potentially important dimensions of the stress process, the model can also guide clinicians in conducting assessments of caregiving families. While the particular components of the model are explored below, three concepts are critical for understanding the process of adaptation over time to a chronically stressful situation like caregiving (Aneshensel et al., 1995; Pearlin, 1993; Pearlin et al., 1990). The first concept concerns the potential for stress proliferation, that is, for the effects of the stressors associated with caregiving to spill over into or interfere in other areas of a person’s life. A caregiving daughter, for example, may find she is arguing more with her husband, who feels neglected because of the time she now spends with her parent. The second concept is stress containment. Containment refers to the processes by which caregivers can limit or minimize the effects of caregiving stressors by using resources available to them. Resources

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Primary Stressors Objective Subjective

Secondary Stressors Role Strain

Outcomes: Health & Well-being

Intrapsychic Strain

Resources

Figure 16.1 A model of caregiver stress. Adapted from Pearlin, Mullan, Semple & Skaff (1990)

can be psychological (for instance, having high self-esteem or good coping strategies), social (for example, receiving instrumental or emotional support), or economic (for example, high income, financial assistance). Because of these resources, caregivers experience less distress or burden in their situation over time than do others who have inadequate resources. Third, caregiving can be understood as a career. Caregivers go through a developmental process of learning or socialization, and experience key transitional events, such as initial diagnosis of their relative’s illness and placement into an institution. A caregiver’s adaptation, then, depends on stressors, resources and the particular point in their caregiving career.

Social Context of Caregiving Who is the caregiver? As we have already seen, many different people may take on the role of caregiver. The kin relationship between caregiver and care recipient makes a difference in terms of feelings of commitment and obligation and how difficult or distressing caregiving will be for them. In turn, feelings of commitment and obligation influence how long someone is willing to provide assistance. The closest relatives, spouses and perhaps also daughters provide the most assistance for the longest period of time. A spouse caregiver almost always shares the same household with the care recipient, at least at the outset of caregiving, whereas daughters and other relatives are more likely to reside in separate households. When older people have a long-term, degenerative disorder, such as dementia, daughters often move them into their household. The available research describes committed caregivers who initially made the decision to become involved, and who remain deeply involved over time. Among this group, the amount of emotional distress experienced in comparable care circumstances differs according to their kin relationship to the care recipient. Typically, husbands caring for their wives report less emotional distress than wives caring for their husbands, even after controlling for severity of the older person’s disease (Anthony-Bergstone, Zarit & Gatz, 1988; Bookwala & Schultz, 2000; Schulz et al., 1993; Williamson & Schulz, 1990; Zarit & Whitlatch, 1992). Surprisingly, few differences are found between wives and daughters who are caregivers,

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once place of residence is controlled. That is, if wives are compared to daughters who share a household with the care recipient they have similar commitments and feelings of emotional distress (Goodman, Zarit & Steiner, 1994; Townsend et al., 1989) and show similar health behaviours (McKibbin et al., 1999). In fact, daughters and wives appear strikingly similar in their commitment and feelings of obligation to the care recipient (Goodman, Zarit & Steiner, 1994). Surprisingly, kin relationship does not affect the likelihood of institutional placement or how long a caregiver keeps someone at home (Aneshensel, Pearlin & Shuler, 1993; Aneshensel et al., 1995). This is contrary to the expectation that spouses would be more likely to persist in the caregiving role than children. This lack of difference may be due to the fact that daughters who have become caregivers are a select group who made a deliberate decision, whereas spouses are more clearly expected to do so. Because of the small number of sons acting as primary caregiver, little systematic information is available on them. In addition, not much is known about various other family members who provide care, such as siblings and grandchildren. Kin relationship, of course, encompasses dyads who vary considerably in their past history and quality of their relationship. Someone who had a good relationship with the care recipient (Williamson & Schulz, 1990) or who believes providing assistance reciprocates for help the care recipient gave earlier in life (Goodman, Zarit & Steiner, 1997) may experience less emotional distress in the caregiving role. In fact, when disability level and degree of cognitive impairment are controlled, higher relationship quality is related to lower levels of depression in caregivers (Lawrence, Tennstedt & Assmann, 1998). The idea of reciprocity is important when determining why someone would become the primary caregiver for an elderly relative. Reciprocity can be an important reason for the choice children make to care for their dependent parents. Children can feel indebted to their parents for the care they received and even for giving them life (Berman, 1987). Blau (1981) describes this indebtedness as an irredeemable obligation toward parents. This perceived obligation can promote feelings of guilt and frustration among adult child caregivers.

Intergenerational exchange When examining patterns of exchange between adult children and their elderly parents, a number of factors can influence the support elderly parents receive. Children and parents who have consistent contact are more likely to give or receive support (Hogan, Eggebeen & Clogg, 1993). In addition, the more children an elderly person has, the more likely they are to receive support (Eggebeen, 1992). When elderly parents are asked who they would receive support from, children are chosen more often than any other family member (Hogan, Eggebeen & Clogg, 1993). Even though older people prefer to receive support from their children, there are factors that affect the likelihood of receiving support. As might be expected, affection (Silverstein & Bengtson, 1997), prior patterns of help (Silverstein et al., 2002), and perceived need (Eggebeen & Davey, 1998) affect the amount of help that the older generation receives. Using data from the National Survey of Families and Households, Eggebeen (1992) explored the differences in patterns of exchange between elderly Americans and their non-coresidential children by marital status and family structure. He found that the likelihood of older people receiving support from their children varies by marital status of the elder. Divorced parents are less likely than widowed parents to be receiving support from their children. Divorce also

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results in decreased contact between parents and children and poorer quality of relationships (Amato, Rezac & Booth, 1995). This is distressing, because married older adults can receive informal support from their spouses, whereas the sole main source of support for divorced elders is their children. With the increased divorce rate, more and more adult children will have divorced elderly parents. This could have a large impact in the amount of help given to parents. In addition, divorced older people tend to be more disadvantaged than those who are married or widowed (Uhlenberg, 1990), so they are most likely to have the greatest need for support.

Culture and socioeconomic status Culture and socioeconomic status affect how caregiving is carried out in many different ways. Ethnic groups differ in values and beliefs about the importance of caring for their older people , and, indeed, in how they view ageing and disability (Lawton et al., 1992; Mintzer et al., 1992; see also Chapter 26, this volume). Black caregivers have been found to show less distress while providing a more intense level of care than their White and Hispanic counterparts (Navaie-Waliser, et al., 2001). For some groups, care of the person at home takes a priority over everything else, whereas other groups are more likely to view professional help in a positive light. To date, the vast majority of studies on caregiving and culture have been carried out in the US so it is not known how the ethnic groups prevalent in the UK differ. Socioeconomic status (SES), or social class, has a complex relationship to the caregiving process. It would be generally expected that people with lower SES would have fewer economic resources and therefore have more of the burden of care on themselves. In the US, however, low-income caregivers often have greater access to publicly supported programs than middle-class families, thus partly offsetting disadvantages due to their low income. They may also be more likely to be able to obtain help from an extended family and friendship network.

Primary Stressors Pearlin et al. (1990) have distinguished between primary stressors and the secondary strains of caregiving. Primary stressors are those events and actions directly related to the elder’s disability and to the assistance provided to the elder. They include the need for assistance with activities of daily living and emotional or behaviour problems of the care recipient. By contrast, secondary strains involve changes in caregivers’ lives that result from their efforts to respond to or manage primary care tasks. This distinction is useful because it separates the events and activities specifically related to an elder’s illness or disability from the ramifications those events may have for caregivers’ lives. By making this distinction, clinicians can more effectively pinpoint the main sources of stress, and target their interventions appropriately. The stress process model further differentiates between objective and subjective dimensions of primary stressors. Objective dimensions are the actual activities the caregiver engages in (for example, assisting with dressing, responding to agitated or depressed behaviour). Subjective dimensions refer to the immediate impact these stressors have on

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the caregiver. This distinction reflects that the meaning or value that someone places on a specific event is a better predictor of its impact than an objective measure of the stressor (Lazarus & Folkman, 1984; Pearlin & Schooler, 1978). Two distinct approaches have been used to evaluate the subjective impact of stressors. The first, drawn from the work of Lazarus and Folkman (1984), assesses how caregivers subjectively evaluate the stressfulness of specific caregiving events (Kinney & Stephens, 1989; Teri et al., 1992; Vitaliano et al., 1991a,b; Zarit, Todd & Zarit, 1986). Taking a somewhat different, though complementary approach, Pearlin and colleagues (Aneshensel et al., 1995; Pearlin et al., 1990) developed three indicators that reflect the main subjective effects of caregiving. These primary subjective stressors are: role overload, that is, becoming physically or emotionally depleted by one’s caregiving activities; role captivity, feeling trapped by one’s responsibilities; and loss of the relationship with the other person. This last dimension is particularly pertinent for progressive disorders such as dementia. It reflects the sense of loss the caregiver feels for the person and what was valued in their relationship. Primary objective stressors have positive but surprisingly small associations with outcome measures, such as depression or emotional distress. Assisting an elder with activities of daily living, including bathing, dressing and feeding, has generally not been found to be related to poor outcomes. Rather, care recipients who have frequent behavioural or emotional problems place more stress on caregivers (Aneshensel et al., 1995; Pruchno & Resch, 1989; Pinquart & S¨orenson, 2003). When diagnosis is considered, caring for someone with a dementia or with another chronic mental disorder is generally much more difficult than assisting someone with physical care needs but few or no emotional or behaviour problems (Birkel, 1987; Pearson, Verma & Nellett, 1988). Caregivers also rate behaviour and emotional problems as subjectively more distressing or stressful for them (Haley, Brown & Levine, 1987; Teri et al., 1992). Agitated and repetitive behaviours in dementia are generally rated as the most stressful. Teri and colleagues note that depressive behaviours, such as when the care recipient may cry or talk about dying, are also very problematic for families. Although clinical lore suggests that caregivers are often overwhelmed by dealing with care recipient’s incontinence, this is not always the case. On average, incontinence is less stressful for caregivers than behavioural or emotional disturbances. A much stronger relationship, with outcomes such as health and wellbeing, emerges when subjective primary stressors are added to the objective measures (Aneshensel et al., 1995; Aneshensel, Pearlin & Schuler, 1993). In particular, role overload and role captivity are important predictors, both in cross-sectional and longitudinal analyses, of how much distress caregivers experience. In other words, increases in role overload and role captivity result in greater emotional distress among caregivers, after controlling for level of objective stressors. A German study found that family caregivers consistently rated their care recipients as having more behaviour problems than did formal caregivers. The differences were more pronounced when family caregivers reported high levels of burden and these differences were still found six moths later (Zank & Frank, 2002). These findings indicate that knowing a specific event has occurred is not sufficient for determining whether it is problematic or troublesome for a particular caregiver. The meaning the event has, as well as its subjective impact, has to be considered. A goal for clinical interventions is to assess what is specifically stressful about a situation, event or behaviour and whether caregivers experience physical or emotional overload in response to the care demands placed on them. Clinicians who look only at caregiving activities and not their

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subjective impact will intervene in ways that miss the mark, and fail to help caregivers with the tasks or problems that cause them the most stress.

Secondary Role Strains Much of the media attention given to family caregiving has focused on its potential to disrupt other areas of the person’s life, particularly to interfere with work, or with the caregiver’s marital relationship. There is evidence of stress proliferation into these areas, but, as with primary stressors, considerable individual differences are found. For women who fill the roles of wife, mother, employee, and caregiver to a parent, the importance placed on each one of these roles is positively related to psychological wellbeing (Martire, Stephens & Townsend, 2000). This is one of the few studies to examine multiple roles of caregivers simultaneously; most research focuses on one role in addition to that of a caregiver. We shall now turn to three specific role strains: family conflict, disruption of work, and disruption of leisure and social activities.

Family conflict Conflict with other family members over caregiving is quite common (Brody et al., 1989). Studies have begun documenting the types and frequency of family conflict. Using a sample of caregivers of dementia patients, Semple (1992) identified three dimensions of family conflict: firstly, regarding definitions of the elder’s illness and how to provide care; secondly, over how and how much the family assists the care recipient; and thirdly, over how they treat and assist the caregiver. All three types of family conflict are more commonly reported by adult children than spouse caregivers. In fact, the primary and the secondary caregiver often disagree on the degree of the recipient’s behaviour problems and the coping ability of the primary caregiver. If the secondary caregiver indicated lower behaviour problems and higher coping ability, the primary caregiver showed more distress (Bourgeois et al., 1996). Family conflict generally is associated with poorer outcomes, specifically, feelings of depression and anger (Aneshensel et al., 1995; Malone Beach & Zarit, 1995; Semple, 1992). Investigating the specific daily interactions between the primary caregiver and other family members, Malone Beach and Zarit (1995) found that giving advice and information was generally experienced as stressful. Providing information is usually viewed as a type of social support. These findings, however, suggest that relatives may be giving advice but not listening to the primary caregiver or finding out what is really needed in the situation. When daughters are the primary caregivers, they may experience conflict with their sisters (Brody et al., 1989; Suitor & Pillemer, 1993). In turn, the sisters of caregiving daughters may feel guilty about not doing more (Brody et al., 1989). A caregiving daughter is more likely to feel support from her husband or from friends than from a sibling (Brody et al., 1992; Suitor & Pillemer, 1993). Family tension and conflict can certainly antedate caregiving. Caregiving can also awaken or intensify long-standing family conflicts between parent and child or among siblings. The quality of the marital relationship before the onset of illness can influence the experience of the caregiver once she begins caring for her husband. Caregivers who rated their marriage as

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more mutually responsive pre-illness showed less depression and exhibited fewer behaviours that could potentially harm (physically or emotionally) the care recipient (Williamson & Shaffer, 2001). Using longitudinal data that control for prior levels of family conflict, Aneshensel et al. (1995) have also found that increases in primary stressors (particularly subjective stressors such as role overload and role captivity) lead to increased levels of family conflict. In other words, there is a proliferation of stress whereby a worsening in basic elements of the care situation is associated with exacerbations of family tensions. These findings have been drawn from long-term caregiving situations. There are many acute crises during which families make critical decisions, such as decisions about a medical treatment, about arranging for care following a hospitalization, or around death and dying. We know less about conflict that can emerge in short-term situations, such as when the older person must go to the hospital. Anecdotal evidence suggests that family members frequently disagree with decisions, or second-guess and undercut the primary caregiver. Transfer of assets, whether during the older person’s life or afterwards, is, of course, another common source of family conflict. A further source of family tensions is when caring for a parent affects the caregiver’s marital relationship. In a comparison of couples with and without an elderly parent with Alzheimer’s disease, Creasey et al. (1990) found that wives with a parent with Alzheimer’s disease tended to have a more negative relationship with their husbands than wives with a healthy parent. Husbands who had a parent with Alzheimer’s disease did not experience comparable tensions. When Adamson et al. (1992) tested a model to find what aspects of the caregiving situation were associated with the marital relationship, they found that depression of the elder and caregiver burden were directly associated with marital happiness. Other variables, such as spouse burden and relationship closeness, affected marital happiness through their impact on caregiver burden. The primary caregiver is at greater risk than his or her spouse for marital conflict.

Disruption of work A form of secondary role strain that is becoming a common concern is that of employment. Research on working caregivers has drawn from theories that address how people acclimatize to the roles they acquire. Goode (1960) introduced the concept of role strain, or the difficulty in meeting the demands of multiple roles. In this view, role strain is seen as normal and even inevitable; therefore the task for everyone is to discover ways to reduce this strain. Other theorists, however, have proposed that occupying more than one role simultaneously can be beneficial (Sieber, 1974). Marks (1977) took this idea one step further by trying to explain why some people have more than enough energy to meet the demands of all their roles. He proposed than an additional role may actually generate energy that can be used to complete the demands of other roles. Studies suggest that there can be both positive and negative effects of being employed and a caregiver simultaneously (Scharlach; 1994; Stephens, Franks & Atienza, 1997). Satisfaction at work has been found to be associated with fewer depressive symptoms, except for those caregivers who experience high levels of caregiving stress (Stephens & Townsend, 1997). Simply advising a caregiver to quit her job would be ill advised without asking about the satisfaction she receives from her job.

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However, workers caring for an elderly relative do face a challenge. In a study of caregiving women in different age groups, middle-aged women, the group that has the highest proportion of workers, had the strongest sense of responsibility concerning caregiving (Brody et al., 1983). In fact, when studying mothers and their daughter caregivers, Brody and Schoonover (1986) found that the mothers received the same amount of help whether their daughters worked or not. Reports of strain are common among working caregivers (Mutschler, 1994; Scharlach & Boyd, 1989). With this finding comes the question of what contributes to that strain. The four main predictors of conflict between work and caregiving are: the elderly family member’s emotional health; the number of caregiving tasks performed by the caregiver; the presence of children in the caregiver’s residence and having caregiving responsibilities when beginning the current job (Gibeau & Anastas, 1989). In addition, sociodemographic variables such as the employee’s gender, marital status, household income, job status, occupation, and flexibility of work schedule are related to employees’ levels of absenteeism and stress (Neal et al., 1990). Other studies have found that the severity of disability of the elderly relative and the intensity of the caregiving responsibilities are related to work and caregiving conflict (Gibeau & Anastas, 1989). In turn, the amount of work-caregiving conflict is related to more caregiving role overload and caregiving strain (Edwards et al., 2002). Another factor to be considered is the type of occupation. Mutschler (1994) reports that production workers have less opportunity to adjust work and care demands than do workers in executive, sales or clerical positions. The effects of caring for an elderly relative have significant consequences in the workplace. A sizeable number of caregivers in the US leave their jobs within three months after becoming a caregiver (Franklin, Ames & King, 1994), and participation in the labour force is significantly reduced for caregivers in most EU countries (Vitanen, 2005). Many workers generally try to rearrange their schedules or reduce their hours, rather than giving up their job (Mutschler, 1994). There are many different factors that contribute to the decision or need to leave a job because of caregiving responsibilities. Caregivers who leave their jobs or reduce their work hours tend to have relatives who have more severe disabilities (Brody et al., 1987; Stone & Short, 1990) and to have faced work constraints for a longer period of time (Mutschler, 1994). Workers have identified changes in work rules that would make the juggling of work and caregiving easier. These changes include flexible work time, reduced hours without reduced benefits, and job sharing. Access to affordable in-home respite or adult day care has also been reported to be helpful. Caregivers using formal services identify those services as critical if they are to maintain their employment and meet their family member’s need for care (Gibeau & Anastas, 1989).

Disruption of leisure and social activities Caregivers, like anyone else, occupy many roles whether they work or not. Even the roles that caregivers take on when they participate in leisure or social activities can play an important part in the stress process of a caregiver. One of the most frequent consequences of caring for a frail elder is the need to give up or restrict social activities (George & Gwyther, 1986; Haley et al., 1995; Horowitz, 1985). Social and leisure activities are closely linked to social

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support, and, as a result, there are not many research studies that look at social activities exclusively. Miller and Montgomery (1990) found that caregivers who report social activity limitations also report greater objective and subjective time and task demands than those who report no limitations in social activities. When the severity of the elders’ impairment was controlled for, the subjective appraisal of the nature of providing care was more important than objective care demands in predicting limitations in social activities. These results indicate that those people who perceive their caregiving situation as demanding may limit their social activities, and lose a vital source of social support.

Secondary Intrapsychic Strain A unique dimension of the stress process model is the concept of ‘secondary intrapsychic strain’. This concept captures an important feature of caregiving that has been hinted at in anecdotal accounts, namely, the tendency for caregivers to become so immersed in their role that they lose their sense of self. As caregiving becomes an all-consuming process, erosion of self-concept can occur, exacerbating the caregiver’s overall wellbeing and hastening the breakdown of care arrangements (Aneshensel et al., 1995; Skaff & Pearlin, 1992 ). Caregiving may also contribute in positive ways to self-concept. Caregivers may feel they are successfully and competently discharging an important obligation and they may feel they have gained some valuable experiences from doing so (Lawton et al., 1989). These positive attributions appear to be very important for many caregivers but do not result in significant containment of stress over time (Aneshensel et al., 1995).

Resources for Managing Stress We have emphasized from the outset that there is considerable variability in the outcomes of the chronic stressors of caregiving. A major source of these individual differences is the resources people have and use. Social support and coping are the most widely recognized and studied modifiers of caregiving stress. A related concept, one’s sense of mastery or control, also contributes to adaptation in important ways. Implicit in the concept of modifying variables is that people are not passive or helpless in the face of stress. Rather, they make active attempts to control, modify and understand the events with which they are confronted. There is a dynamic relation between stressors and resources, by which the use of effective approaches may lessen the impact of stressors and even how often they occur. Ineffective strategies, by contrast, can further aggravate the situation. We also believe that these resources are not fixed or immutable like traits. Instead, resources may become depleted over the course of a long period of chronic stress, or may become augmented, as caregivers learn new strategies for coping or seek out new sources of support (Pearlin & Skaff, 1995).

Social support Social support is perhaps the most important modifying variable for family caregivers. In the face of problems that frustrate individual efforts at coping, as is often the case in

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chronic disease, social support can be an important source of help to caregivers. Supportive relationships can lessen their frustration and provide some relief from the ongoing pressures of caregiving (Hansson & Carpenter, 1994). Social support has multiple dimensions and has been studied in many different ways. For the sake of simplicity, we will emphasize two major categories of social support: instrumental support, or actual assistance in performing certain tasks, and emotional support, the extent to which other people reflect positive feelings to the caregiver. We shall consider support provided by informal sources, namely, family, friends or volunteers, and from formal or paid sources. The idea that social support from family and friends decreases the effects of stress is widely held. Benefits have been found for both mental and physical health. Harper and Lund (1990) report that perceived social support is related to lower subjective burden among wives, husbands and daughters of people with dementia. Clipp and George (1990) report that caregivers who have high and stable support are less likely to experience a decline in their own health over time. Similarly, Kiecolt-Glaser and her colleagues (Kiecolt-Glaser et al., 1991) found that social support buffered the effects of chronic stress on the immune systems of spousal caregivers of Alzheimer’s patients. Despite these generally positive findings, other studies have reported that social support has no benefits (Cosette & L´evesque, 1993; Stommel, Given & Given, 1990). One reason for these discrepancies may be that studies have assessed different types of social support (Miller et al., 2001) and have examined social support through the subjective lens of the caregiver. For example, Rivera and colleagues found that depressed caregivers report less positive feedback and fewer recreational contacts than nondepressed caregivers (Rivera et al., 1991). It is not known whether the difference lies in the perception of support or the type of support received. Complicating the issue further is that the same type of support benefits spouse caregivers and daughter caregivers differently (Li, Seltzer & Greenberg, 1997). Another source of differences may be that involvement with family and friends, but particularly family, can be a source of both support and conflict (Malone Beach & Zarit, 1995; Suitor & Pillemer, 1993). The effects of formal support are less clear cut. Many caregivers in large-scale studies report using little or no formal help (for example, Mullan, 1993; Stone, Cafferata & Sangl, 1987). Caregivers most in need of formal assistance may, paradoxically, be least likely to obtain help. Mullan (1993), for example, found that caregivers who were depressed were less likely to use formal services over time than nondepressed caregivers. Another complicating factor is that many family caregivers delay use of formal services until the situation has become critical. Noelker and Bass (1989) found that high levels of impairment among care recipients and declining health among caregivers predicted use of formal services. Similarly, many caregivers of people with dementia delay use of adult day care until late in the disease, when benefits of day programmes are limited (Zarit et al., 1999). If formal services are introduced only when caregiving is breaking down, families may not gain the kind of relief intended by the programme. Another complicating factor is how well formal and informal sources of assistance interface. Noelker and Bass (1989) suggest a framework for viewing the type of coordination of formal and informal help. They propose five patterns: kin independence, where the family provides all assistance; formal service specialization, in which agencies perform one or more tasks exclusively, while families assist with other tasks by themselves or in conjunction with agencies; dual specialization, where families and agencies assist with different tasks; supplementation, where agencies assist with tasks that are also provided by the

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family; and substitution, where agencies take over all tasks previously provided by the family. The pattern of interface may be related to how effectively formal services help caregivers. Some patterns of interface may be more adaptive at different points in a caregiver’s career or for carrying out certain caregiving tasks, or some caregivers may do better with one type of interface than another (Lyons, Zarit & Townsend, 2000). For example, the use of healthcare services for care recipients who are more physically disabled is associated with better caregiver outcomes; whereas the use of home services when the care recipient displays behaviour problems is associated with lower caregiver depression (Bass, Noelker & Rechlin, 1996). How informal and formal helpers interact with one another may be a critical factor in how much relief caregivers experience. Although caregivers generally view formal service providers as helpful, they often complain that services are not flexible or suited to their needs (Malone et al., 1992). Agencies may take away caregivers’ sense of control, for example, by not explaining what services the family is eligible for, or by not allowing families to make choices about the type and timing of services.

Coping Coping represents the responses people make to stressors to avoid their harmful consequences (Pearlin & Schooler, 1978). Most research on coping has identified three broad categories of responses (e.g. Lazarus & Folkman, 1984; Pearlin & Skaff, 1995). Problemfocused coping includes strategies that are focused on management of the stressors or the situation that gave rise to them. Cognitive coping, in turn, represents efforts to manage the meaning of the stressful situation, for instance relabelling a difficult problem as a learning experience. Finally, emotion-focused coping involves management of the symptoms of stress. It has generally been reported that cognitive coping and problem solving is related to lower distress and emotion-focused coping to higher distress (e.g. Haley et al., 1987; Quayhagen & Quayhagen, 1988; Vitaliano et al., 1991b). Clinical reports also emphasize that learning to manage stressors more effectively is helpful (Zarit & Zarit, 2006). The efficacy of a coping strategy, however, may depend to an extent on the nature of the stressor. When stressors are not easily modifiable, as is the case for some aspects of caregiving, then strategies which manage the meaning or consequences of these events may be more productive (Park & Folkman, 1997; Pearlin & Skaff, 1995). It is also important to consider that stressors and coping have a reciprocal relation. Stressors evoke coping responses, but effective efforts at management may lower the rate at which stressors occur. Ineffective coping in turn can lead to exacerbation of behavioural and emotional problems. As an example, confronting a person with dementia who asks to see her long-deceased mother is likely to make her more agitated and to increase the frequency of her request. By contrast, comforting her and reminiscing about her mother can be calming and can lead to a reduction in the frequency of this behaviour. Bledin et al. (1990) have proposed an intriguing link between expressed emotion (EE) and poor coping. Expressed emotion refers to communication of negative emotions in speech and verbal behaviour, such as critical comments, hostility and the absence of warmth. Bledin and associates found that higher rates of negative emotions were related to poor coping strategies among daughters who were caring for a parent with dementia. In turn, EE and

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poorer coping were associated with greater emotional strain. High levels of EE have also been reported to be associated with less frequent use of strategies to manage the meaning of stressors by caregivers (Vitaliano et al., 1989). Researchers are just beginning to examine how some caregivers use spiritual beliefs and prayer to cope with the stressors of their role. Caregivers of people with Alzheimer’s disease report that their spiritual beliefs and religious practices help them cope with the demands of their role (Robinson & Kaye 2001; Stuckey, 2001). Caregivers who used religious or spiritual beliefs as coping mechanisms have a better relationship with care recipients, and in turn have lower levels of depression (Chang, Noonan & Tennstedt, 1998).

Mastery or control A third resource, which is more abstract than social support or coping, is the sense that people have control over the events in their lives. Feelings of control have been found to be effective buffers for a variety of stressors (Cohen & Edwards, 1989) and an important contributor to wellbeing and health of older people in many different situations (Rodin, 1986). Using a family systems perspective, Boss and colleagues (Boss et al., 1990) report that greater ambiguity about family boundaries and mastery predicted depression among caregivers of dementia patients. Daughters with higher levels of mastery are more likely to use problem-focused coping strategies and show lower levels of depression than those who have lower levels of mastery (Li et al., 1999). Mastery reduces stress proliferation over time and may result in better adaptation following key transitions, such as placement in a nursing home (Aneshensel et al., 1995). As noted earlier, feelings of mastery or control may be important determinants of whether or not caregivers use and get relief from formal services (Malone et al., 1992).

Outcomes of Caregiving Outcomes include the effects of caregiving on wellbeing. There is considerable evidence that caregiving is associated with negative mental health consequences, particularly elevated rates of depressive symptoms (e.g. Gallagher et al., 1989; Kiecolt-Glaser et al., 1991; Schulz et al., 1995; Whitlatch, Feinberg & Sebesta, 1996; Wright, Clipp & George, 1993). Following caregivers of Alzheimer’s patients over three years, Redinbaugh, MacCallum and Kiecolt-Glaser (1995) found that half of the sample met criteria for syndromal depression at one or more assessments. Rates of depression symptoms are high when caregivers are compared with noncaregiving samples that are similar in age and gender (AnthonyBergstone, Zarit & Gatz, 1988; Jutras & Lavoie, 1995). Depression and other problems are generally lower among caregivers of physically impaired compared to cognitively impaired older people (Birkel, 1987; Tennstedt, Cafferata & Sullivan, 1992). Caregivers sharing a household with the care recipient are more likely than others to experience depressive and other mental health symptoms. Though most research has focused on depression, feelings of anger may be a particularly important dimension (Anthony-Bergstone et al., 1988; Coon et al., 2003). Findings on the effects of health have been mixed, with some studies showing that caregivers have poorer health and others reporting little or no effect (Vitaliano, Zhang

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& Scanlan, 2003). The most dramatic finding is that caregivers who experience strain in that role have higher rates of mortality than age- and gender matched controls (Schulz & Beach, 1999). Several studies have documented the effects of chronic stress on physiological systems, including cardiovascular, endocrine and immunological functions (Kiecolt-Glaser et al., 1991; Kiecolt-Glaser & Newton, 2001; Vitaliano et al., 2005; Vitaliano, Zhang & Scanlon, 2003). Over time, these cumulative effects may lead to increased risk of health problems and mortality, although more investigation is needed. The question has also been raised about whether there might be positive outcomes or benefits of being a family caregiver (Lawton et al., 1989; Pearlin et al., 1990; Stephens, Franks & Townsend, 1994; L´evesque, Cossette & Laurin, 1995; Riedel, Fredman & Langenberg, 1998; Wright, Clipp & George, 1993). Caregivers may, for example, gain a sense of having fulfilled an obligation or believe they have helped their relative in important ways. These positive benefits deserve more attention, because they may be at the heart of why some caregivers are willing to continue in this role, despite considerable personal sacrifice. The timeframe in which outcomes are measured has often been compressed. In some cases, outcomes are measured simultaneously with predictors, or there is a short-term longitudinal design of six months or one year (but see Aneshensel et al., 1995, as an example of a long-term study of outcomes). Because caregiving often continues over several years, information on longer time spans is needed to examine more fully these various outcomes. Longitudinal studies have found that caregivers vary a great deal over time in their functioning. Some caregivers decline in wellbeing, others improve and some remain the same over time (for example, Arai et al., 2002; Schulz et al., 1993; Townsend et al., 1989; Zarit, Todd & Zarit, 1986). As summarized earlier, some predictors of longitudinal outcomes have been identified. Reductions in wellbeing over time are related to higher rates of behavioural disturbances and proliferation of stress into other roles, while improved wellbeing is associated with better resources (Aneshensel et al., 1995). The term ‘outcome’ also has a larger meaning than symptoms or burden. One way to conceptualize the outcome of caregiving is the extent to which families feel they have achieved their objectives or feel that the sacrifices they made were balanced by the worth of what they were doing. Another type of outcome is the discontinuation of caregiving, such as when caregivers turn their relative over to another family member or to a nursing home. How caregivers make that decision and whether it represents a positive or negative outcome may very well be the most important issue in a caregiver’s career. We shall also turn to that issue in the following section.

Transitions in Caregiving Caregiving is a dynamic, evolving process that changes over time in relation to fluctuations in the condition of the older person, depletion and/or augmentation of the caregiver’s resources and variability in secondary stressors that may impinge on the situation. The course of caregiving varies, depending on the nature of an elder’s disability; specifically whether the condition is stable, improving or deteriorating. While there can be considerable heterogeneity, three important transitions affect caregivers in critical ways: entry into the role; placement of the elder into an institution and bereavement (Aneshensel et al., 1995). We do not imply that these transitions form a series of ordered stages. In fact, many caregivers may never have to place their relative into an institution. There will also be

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other transitions during the caregiving career, around which families reorganize and rethink their involvement. These three transitions, however, are particularly pivotal points for many caregivers.

Entry into the caregiving role Of these three transitions, least is known about entry into the role. Who becomes a caregiver is, as we noted earlier, determined to an extent by social norms. Recognition of one’s entry into the role may be sudden, such as when an elder has a stroke or fractures a hip. More typically, however, families respond to gradually growing needs as an elder’s condition deteriorates slowly over time. Under those circumstances, some key event, such as if the older person wanders away from home and gets lost or is diagnosed with Alzheimer’s disease, crystallizes the change in status and responsibilities of the caregiver. In one of the first prospective studies of entry into the caregiving role, Gaugler and his colleagues (Gaugler, Zarit & Pearlin, 2003) found that how abruptly a person begins his or her career as a caregiver is associated with wellbeing. Caregivers were followed for three years, and information concerning institutionalization and adaptation (including depression and role overload) was collected. Those who began caregiving duties before a diagnosis was made or symptoms of dementia were recognized, showed better adaptation to their role over time and were less likely to institutionalize the care recipient. Though we have little prospective or concurrent information on caregivers going through role acquisition, they are often quite explicit in retrospective reflections on what they would have liked during this process. In general, caregivers report that when they received a formal medical diagnosis of the elder’s condition they were given little explanation of the meaning or consequences of the disorder (Aneshensel et al., 1995). They also received virtually no information about caregiving, potential formal resources they might use, or legal and financial implications. The one piece of advice likely to have been given is that they should consider nursing-home placement, an event that is usually many years away.

Institutionalization as a pivotal transition In any chronic, debilitating condition, nursing-home placement is a compelling alternative to family care. Most families consider placement at least at some point during their caregiving career. Timing of placement is highly variable. For disorders with a predictable deteriorating course, such as dementia, placement can occur at any point, or not at all (Zarit, Todd & Zarit, 1986). Retrospective accounts identify the elder’s behaviour as the main factor that led to placement. Prospective studies, however, have found that subjective indicators of stress, such as feeling trapped or burdened, are as important in leading to placement as the elder’s behaviours or functional impairments (Zarit, Todd & Zarit, 1986; Aneshensel, Pearlin & Schuler, 1993). Placement does not end the caregiving role but represents a restructuring of it. While nursing home placement reduces some stressors, there are also new problems and challenges. Studies following placement have found that most caregivers remain involved in the nursing home. They visit frequently and typically assist with at least some activities of daily living (Aneshensel et al., 1995; Duncan & Morgan, 1994; Schulz et al., 2004). Caregivers no

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longer have major responsibility for daily care but they now often interact with staff to ensure that their relative receives appropriate care. Learning how to interact with staff in an effective way and to accept differences in how staff members provide care can be a major challenge. Because staff may change or rotate to different units, families feel there is no continuity in care or in their relationships with staff (Duncan & Morgan, 1994). Feeling they have lost control over the situation and concern that staff are not providing adequate care can be very distressing to families. Another new stressor following placement, particularly in the US, is the cost of care. Because nursing-home care is rarely covered by insurance, families can experience considerable economic strain. In particular, spouses of a nursing-home resident can expect to spend half or more of their assets before government assistance programmes take over. Nursing home placement also places family caregivers, particularly spouses, in an ambiguous and undefined role. They are not widowed but they also do not have the companionship and other benefits of being married. This ambiguous status has been described by Rosenthal and Dawson (1991) as ‘quasi-widowhood’. Friends and even family do not know how to treat the person or even how to talk about the placement. They may avoid the caregiver or avoid talking about what is meaningful to the caregiver. Caregivers may be excluded from social situations involving couples, because of the uncertainty surrounding their marital status. Caregivers may, in fact, receive more support and attention following the person’s death than after placement, because there are clear norms and expectations for behaviour toward people in mourning. Finally, many people experience guilt following placement, which contributes to their feelings of emotional distress. Given the continuities in caregiving after placement and the new problems associated with it, it should not be surprising that caregivers continue to experience considerable emotional distress. Zarit and Whitlatch (1992, 1993) used a longitudinal panel of caregivers of people with dementia to compare people who placed their relative during a one-year time period with those who provided continuing care. Placement was associated with a decrease in primary subjective stressors, that is, feelings of burden directly associated with daily care routines, but there was little improvement in emotional wellbeing in the year following placement, compared to the group continuing care at home. In other words, caregivers who were depressed and had anxiety prior to placement often remained depressed and anxious following placement (see also Schulz et al., 2004). Over a longer period of time, mood improves, but even up to four years following placement, about a quarter of caregivers experience significant emotional distress (Aneshensel et al., 1995). Caregivers are often advised to place their relative out of the belief that this will lower the stress on them. As these results suggest, the benefits are far more limited and placement typically leads to new stresses. These findings suggest that advice about placement should never be made casually. Furthermore, it is evident that caregivers need support following placement to help with the challenges of this transition.

Cessation of caregiving: bereavement and its aftermath The final transition in caregiving is bereavement. Like placement, however, one’s identity as a caregiver and the cumulative effects of caregiving do not end with the elder’s death (see also Chapter 5, this volume). Many caregivers continue feeling considerable emotional distress following their loss, either related to distress during the caregiving role (Aneshensel

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et al., 1995; Bodnar & Kiecolt-Glaser, 1994) or because of the loss of an important and meaningful role (Boerner, Schulz & Horowitz, 2004). A caregiver’s wellbeing after bereavement can follow a number of trajectories. Aneshensel and her colleagues (Aneshensel et al., 2004) followed caregivers for five years and found that those caregivers who did not show symptoms of distress before bereavement, did not do so afterwards. However, those caregivers who were emotionally distressed before bereavement exhibited more and more symptoms after the care recipient died. Lower role overload, more socioemotional support, and higher self-esteem can protect caregivers against distress after bereavement. Therefore, interventions aimed at increasing support and decreasing role overload can benefit caregivers, not only while they are actively caring but long after the care recipient dies (Aneshensel et al., 2004).

CLINICAL INTERVENTIONS As we have seen, caregiving places people at considerable risk with regard to their own health and emotional well-being. Although the elder’s illness may be chronic and largely untreatable, many dimensions of the stress process are potentially modifiable. Clinical interventions that target these modifiable features of the caregiving situation can effectively lower stress on the family, while addressing the elder’s care needs in optimal ways. These interventions can help caregivers manage their situation more effectively and make informed choices about providing care that reflect their values and those of their relative. The focus will be on interventions for caregivers of people with dementia. Although the treatment process can vary depending on the type of disorder, the approaches developed for this most severe of problems have wide applicability. Our examination of clinical interventions will begin with assessment issues. Next, we shall consider clinical approaches for caregivers assisting a relative in the community. We shall conclude with a consideration of interventions around the key transition of nursing-home placement. Reviews of the effectiveness of interventions can be found in Knight, Lutzky and Macofsky-Urban (1993), Zarit and Leitsch (2001) and Chapter 32 of this volume.

Assessment for Interventions with Caregivers As with any clinical intervention, the foundation of a successful treatment is careful assessment. Assessment of caregivers is especially important because of the heterogeneity in stressors, resources, values and other factors that affect treatment. Interventions need to be tailored to a family’s specific problems and concerns, rather than being based on theoretical notions of what caregivers ought to need. Often the first step in an assessment is to clarify the care recipient’s medical diagnosis. The family may not have complete information about the diagnosis. In cases where the older person has not seen a geriatric specialist, there may be questions about whether or not the diagnostic process has been adequate. Many potentially treatable disorders can cause symptoms that mimic dementia and so it is imperative that these problems are ruled out before developing an intervention. Treatable components of other problems may also be overlooked – for instance, the use of vision and hearing aids in cases of sensory loss.

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Assessment next proceeds to identify the unique stressors and resources for a particular caregiver. The stress process model, which was introduced earlier, can be used to guide the assessment process. In identifying primary and secondary stressors, clinicians should keep in mind two important points. First, medical diagnosis is only the starting point. The problems facing a particular family can vary considerably, even when the diagnosis of their elder’s condition is the same. Although disorders like dementia follow a predictable course, the type and severity of problems that families encounter can be quite different. As an example, agitation is a common problem in the middle phases of dementing illnesses, but some patients exhibit little or no agitation. Rather than assuming that all dementia patients become agitated, the clinician needs to determine if that problem is actually present. Second, caregivers differ in which problems they find stressful. As an example, one of us worked over a period of 10 years with a husband who was caring for his wife, who had dementia. During that whole time, the most stressful problem he encountered occurred early in his wife’s illness when he had to take over paying the household bills. Late in the disease, his wife became incontinent. While incontinence is a problem that many people regard as overwhelming, this caregiver did not find it stressful at all. Consistent with the literature on other stressful events, caregivers respond to problems in varied ways. Even behaviours that most people would find upsetting, such as agitation or distortions of reality (for example thinking a deceased relative is alive) may not bother or overwhelm some caregivers. The clinician, then, must assess which problems are stressful for this family, rather than assuming that everyone finds a particular problem difficult. This principle applies to secondary stressors as well. As we discussed earlier, holding a job while giving care can add to one’s stress, but it can also be an outlet that allows some caregivers to get away from the problems of their relative’s illness. Similarly, reductions in social activities and even conflict with other family members may or may not be important to a particular caregiver. An important goal is to treat those problems that are troublesome or upsetting to a given caregiver, rather than to intervene for problems that the caregiver is managing well. In the process of identifying stressors, clinicians can also obtain information about resources and deficits in the situation – for example, coping strategies that are working well or poorly, or the absence of any coherent, effective way of managing the elder. Two particular problems are encountered in a small number of cases: abuse and risk of suicide. Some caregivers are physically or psychologically abusive (see also Chapter 18, this volume). Abuse may occur out of mistaken ideas about care, for example, when a person with dementia is restrained in bed as a way of controlling wandering. Suicidal thoughts are common, especially among husbands caring for their wives. They may be considering ending their wife’s life and their own. A standard clinical inquiry about suicidal and homicidal thoughts is warranted as part of the assessment (see also Chapter 7, this volume).

Community Care: Strategies and Interventions Clinical interventions require a flexible approach that addresses the individual differences among caregivers. There are some general strategies, however, that are likely to be relevant in most caregiving situations. These strategies include: educating caregivers about their relative’s disability and other problems, improving management of stressors, and increasing emotional and instrumental support. We will show how these strategies can be implemented

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in three clinical approaches: individual counselling; family counselling; and support groups. This model is described in more detail in Zarit, Orr and Zarit (1995) and Zarit and Zarit (2006). Treatments based on this approach have been found to reduce subjective burden and depression among caregivers of people with dementia and to delay institutionalization (Mittelman et al., 1993, 1995, 1996; Whitlatch, Zarit & Von Eye, 1991). Effects may last as long as three years after treatment (Mittelman et al., 2004).

Strategies for Intervention Educating caregivers A very important part of interventions with caregivers is identifying what information they have about their relative’s illness, the implications of that illness, and their long-term options for care. At the point caregivers seek assistance they often have very little information. Although their relative’s condition is chronic and intractable, they may still be wondering about treatments that might reverse the disabilities. The availability of medications for Alzheimer’s disease, including cholinesterase inhibitors and memantine, offer some hope, but the gains provided are limited and short lived. Families may need help in deciding when it is appropriate to stop searching for a cure, so they can focus their energies on managing the illness. When caring for someone with dementia or other mental health problems, caregivers often misinterpret behaviours in ways that lead to greater stress on themselves and on their relative. As an example, caregivers may believe that a dementia patient who asks the same question over and over again may be doing so to annoy or aggravate them. In turn, they will respond with anger or exasperation, which only increases the patient’s agitation. In situations like that it is important to teach families about the effects of their relative’s illness and to help them interpret troubling behaviours as part of the illness. In some instances, caregivers need to recognize that their relative can no longer manage independently, or may not even be able to behave in rational or appropriate ways. They have to understand that they must take charge of the situation. Helping them reach this point should be done carefully and with a great deal of support. It is not the role of clinicians to beat down a caregiver’s denial but rather to establish a nonjudgmental relationship in which caregivers are able to explore their alternatives and develop a better understanding of their situation. Caregivers also need to become familiar with legal and financial arrangements that affect the care of their relative. Legal issues, of course, vary considerably from one country to another. Relatives may seek authority for the following: to make medical and carerelated decisions for a cognitively impaired or mentally disabled elder; to make decisions about resuscitation and end-of-life care; and to manage the elder’s finances. The latter is particularly important in the US, where there is no government assistance for nursing home care until an elder has used up most personal resources.

Managing stressors Caregivers often use inadequate or inappropriate methods for managing stressors, or they may not know how to respond at all. Disturbed behaviour and mood are especially

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problematic. Caregivers may respond by confronting or avoiding the elder, neither of which is a particularly effective strategy. Training caregivers to use simple behavioural management techniques can help them manage a variety of everyday problems. These approaches have been useful for problems such as agitation, incontinence, wandering, not sleeping at night, and depressed mood (Teri et al., 1997). As a first step, caregivers record over a period of several days when incidents of problem behaviour occur, as well as the events that preceded them and the events that followed. The clinician is looking to identify antecedents that trigger problem behaviour and consequences that act to reinforce problem behaviour. By identifying the pattern of possible antecedents and consequences, a clinician and caregiver can work together to generate possible solutions. Solutions include changing the environmental cues that may trigger problem events, increasing positive activities as a way of improving mood and preventing problem behaviours and increasing reinforcement of appropriate behaviours (Zarit & Zarit, 2006). The problems caused by secondary stressors, such as conflict between work and an elder’s needs or family disagreements, often require extensive discussion and planning to come up with potential solutions. A collaborative, problem-solving approach can help generate practical options for addressing these problems. These approaches to managing stressors require a transition from educational efforts. Education helps caregivers understand what the person cannot do and why help is needed. Paradoxically, acceptance needs to lead to an active management approach. Many of the daily hassles of caregiving can be relieved through systematic examination of their antecedents and consequences, and alternative approaches for managing the situation. While giving up hope for their relative’s recovery, caregivers learn to become more effective in managing these day-to-day problems, thereby improving their quality of life and that of their relative.

Providing support As discussed earlier, support includes both emotional and instrumental support. The clinician serves as a very valuable source of emotional support. Although conveying information and training caregivers in new skills, clinicians must always make these interventions in the context of a supportive, nonjudgemental relationship. Within the safety of this relationship, caregivers will be willing to take risks and try new behaviours that may improve their circumstances. The assumption behind many community-based service programmes is that caregivers can be assessed and then matched to services in one or two sessions. That approach is not realistic because caregivers need more time to sort out their options and preferences, and to overcome feelings of hopelessness and helplessness that may have developed. Emotional and instrumental support may be available from family and friends. Caregivers sometimes isolate themselves unnecessarily. They may be afraid to ask for help or may believe that other people should know what kind of help they need, volunteering it without their asking. Caregivers may need to be encouraged to reach out to these potential sources of support. Help from service agencies can relieve caregivers of some of their burden but they are often reluctant to use services for a variety of realistic and unrealistic reasons. Among realistic obstacles are the possibility that services may not be appropriate to the caregiver’s needs; service providers may be unreliable such as when home health aids do not show up as

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scheduled; or services may be too expensive. Unrealistic obstacles include beliefs that it is wrong to use help, that the family should do everything by themselves, that no one else can provide appropriate help, or that the elder will be harmed in some way by the formal service. Clinicians need to work patiently with caregivers to sort through these reasons. In the case of realistic barriers it will often be possible to identify alternative approaches. For unrealistic barriers, clinicians can engage caregivers in a process of identifying and testing out the beliefs that block them from accepting help and then generating new ways of looking at the situation. This approach, which is drawn from cognitive behaviour therapy (Beck et al., 1979; see also Chapter 27, this volume), engages caregivers in an active, supportive process to identify and examine the assumption they are making that prevent them from use help and resources. Most caregivers are likely to think about nursing-home placement at least at some point in the course of their involvement. All too often, clinicians recommend placement precipitously, when other alternatives might be possible. It is important to proceed cautiously because, as we showed earlier, placement shifts, but does not relieve, caregiver distress. Placement can also be associated with negative effects for the older person. There is an increased risk of mortality following placement, even after controlling for health (Aneshensel et al., 2000). Nursing homes can also increase the rate of excess disabilities among older residents by restricting activity and taking away control over personal routines and activities (Zarit, Dolan & Leitsch, 1998). In effect, placement represents a difficult choice, which often must be made but should never be suggested lightly, casually, or without careful thought. The role of clinicians is to give permission to caregivers to consider placement as one of the options available to them. In a collaborative way, clinician and family can explore the pros and cons of placement. Families need, however, to make this decision in their own way, consistent with their values and the resources available to them. There is no right time, nor should clinicians try to beat down the caregiver’s resistance to placement. Some families are willing to make whatever sacrifices are necessary to keep an elder at home and may have the resources to do so.

Clinical Approaches with Caregivers Counselling A counselling relationship with the primary caregiver forms the foundation for interventions. It allows caregivers to learn and try out new strategies for managing stressors and to consider alternatives and options for care. As noted, the counselling relationship provides emotional support, which may be pivotal in helping caregivers to take a more active role in coping with their situation. The focus often fluctuates between consideration of the caregiver’s needs and trying new strategies for managing the situation. Counselling can be brief or long-term, depending on the complexity of the situation and the extent to which the elder’s disability might bring up long-standing problems or concerns of the caregiver. Many caregivers benefit from a small number of sessions (five to 10), which emphasize providing new information, trying out new approaches and obtaining additional support. Long-term counselling typically addresses pre-existing personal or interpersonal issues that the elder’s disability has brought to the fore (see Zarit & Zarit, 2006). As an

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example, disability in one member of a couple who were highly dependent on one another may result in very strong emotional reactions in the caregiver and considerable ambivalence about taking over activities previously performed by the spouse.

Family counselling Family counselling is a powerful approach for working with caregivers. The family is potentially a major source of assistance. They can provide more flexible help than formal agencies as well as providing the emotional validation that caregivers need. On the other hand, conflict over how the care is being provided can be a major source of distress to everyone involved. Family interventions that are designed to decrease conflict and increase instrumental and emotional support have proven to be a very effective way of lowering stress on the caregiver (Mittelman et al., 1993, 2004; Whitlatch, Zarit & Von Eye, 1991). Between one and four family sessions focused on caregiving issues can resolve disagreements and build a consensus on the support that the primary caregiver needs. Clinicians should plan for family meetings carefully. It is important to learn in advance something about the family system (for example, how the family solves problems, who is influential, what conflicts there are over caregiving, what longstanding conflicts there may be). The clinician and primary caregiver work collaboratively to plan who to invite. The timing of the meeting should occur at the point when caregivers have a good understanding of their situation and when they are able to identify the types of help that their family could provide that would be useful to them. Where to hold the meeting is another concern. Family meetings are often more effective when held in the caregiver’s home, or in the home of another relative, rather than in the clinician’s office. Families are less defensive when they are on familiar ground and may even be impressed by the clinician’s commitment to come to the home. The family session recapitulates the process that primary caregivers have gone through. Typically, the session begins by examining what is known about the patient’s condition and dispelling any misunderstandings about diagnosis or treatment. In cases of dementia, families may also benefit by asking questions about causes of the disease and learning more about why patients behave the way they do. Rather than lecturing, the clinician should be a resource who responds to questions from the family. When there is a consensus about the patient’s condition, the focus can be turned to the caregiver. Caregivers can be asked what would help them. Some will be able to indicate what they would want but others may need encouragement. The family will often begin, on its own, to consider how it could meet the caregiver’s needs. Only if it cannot do so should the clinician offer suggestions. Typically, the family’s own solutions will be better than the clinician’s, because they are more likely to work within that family system. There are a number of steps clinicians can take to make the family session more successful. First and foremost is to avoid being drawn into a discussion of long-standing disagreements. A family meeting is different from family therapy. The participants did not request treatment for long-standing family issues, nor would that type of process be useful in the short run for the caregiver or patient. Rather, the focus needs to remain on how to help the caregiver. Second, the clinician should guide families towards realistic plans. If a family member makes an unrealistic commitment, it will be more frustrating for everyone in the long run. Third, the clinician should encourage everyone to help in one way or another, while

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discouraging comparisons about whether everyone is doing their share. Old sibling rivalries and other tensions need to be diffused, or they will drain everyone’s energy without helping the caregiver. The clinician can point out that there are many different ways of helping, and that everyone should do what they can. One person may only be willing or able to call the primary caregiver, while another person volunteers to provide respite. While very different in the amount of effort, each type of help can be useful in its own way. Finally, as with any behaviourally oriented task, the types of help to be provided should be specific, including who will do what and when it will take place. There should be follow-up to the family meetings to see if everyone has done what was agreed upon. The clinician can also be a resource that the family can turn to if there is a significant change in the situation.

Support groups Support groups are a very popular intervention for family caregivers, especially for people assisting someone with a dementia. Part of a genuine grassroots movement, support groups arose in response to caregivers’ feelings that they were not getting the information or help they needed from physicians and that family and friends did not understand or support them. Research on support groups suggests they are not as effective as counselling or a combination of individual and family treatment in relieving the caregiver’s emotional distress (Toseland et al., 1990; Whitlatch, Zarit & Von Eye, 1991). On the other hand, there are many positive things that groups can do. Groups can be a practical way of disseminating information about a disease and particularly about different ways of coping with the consequences of it. Caregivers readily share information about which physicians or other providers are helpful, which home services are worth trying, and so on. They can also make very creative suggestions for managing problem behaviours and other stressful situations. Groups can also convey a special type of understanding that results from talking with people who have shared a similar experience. Groups can be organized in many different ways. They can have a professional or a peer leader. The group can be open to anyone who wants to attend a session, or it can be closed to a small number of participants. It is often useful to interview people before they attend a group to divert anyone who may be too upset at that time to benefit or who would in some way not be able to contribute, for example, a person with a severe hearing loss or who suffers from a severe, chronic mental health problem such as schizophrenia. On the other hand, it may not be possible to do that in every group. The format for the group can also vary. Some groups mainly discuss caregivers’ problems and feelings, whereas other groups may bring in speakers. These different ways of structuring groups can achieve distinct goals. There is probably no one right way to run a support group. Rather, clinicians (or peer leaders) should consider what their goals are, and then structure the group optimally for achieving those ends. As with any group, the leader must sometimes take an active role to mobilize the therapeutic potential of group interaction. Leaders must also restore a balance when, for example, one person dominates the conversation, or when there is a lot of conflict. As a group develops, leaders often find that they can step back a bit and let the members take the lead. The whole point of a support group, after all, is to learn from people in similar situations, so the more the members interact directly with one another the better.

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CONCLUSIONS Caring for a disabled elder can be very stressful and demanding. As the population has aged, more people need help than ever before, often for long periods of time. Because of trends in modern society, this explosion of dependent older people has occurred at the same time that the family’s resources to care for them have declined. Women’s working outside the home and high rates of divorce and remarriage have reduced the resources families have for caring for the older generation. Caregiving is often very stressful for families, especially in cases of dementia and when the disability persists over long periods of time. While it may not be possible to improve the elder’s condition significantly, there are often modifiable aspects of the care situation. As examples, building social support and improving how caregivers manage stress can alleviate some of their emotional distress. Clinical interventions can target these modifiable dimensions to reduce stress on caregivers. Interventions can include individual counselling with the caregiver, family counselling, and support groups. In the end, caregiving poses a considerable challenge to families and to society. Clinical approaches can help lower the burden on caregivers and help them continue to care for their relative in the best possible ways.

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US Bureau of the Census (1990) The Need for Personal Assistance with Everyday Activities: Recipients and Caregivers. Current Population Reports (Series P70–19) Washington DC: Government Printing Office. Velkoff, V. & Lawson, V.A. (1998) Gender and Aging: Caregiving. International Brief, Bureau of the Census. IB/98-3. US Census Bureau, Washington DC. Vitaliano, P.P., Becker, J., Russo, J. et al. (1989) Expressed emotion in spouse caregivers of patients with Alzheimer’s disease. Journal of Applied Social Sciences, 13, 216–50. Vitaliano, P.P., Echeverria, D., Yi, J. et al. (2005) Psychophysiological mediators of caregiver stress and differential cognitive decline. Psychology of Aging, 20(3), 402–11. Vitaliano, P.P., Russo, J., Young, H.M. et al. (1991a) The screen for caregiver burden. The Gerontologist, 31(1), 76–83. Vitaliano, P.P., Russo, J., Young, H.M. et al. (1991b) Predictors of burden in spouse caregivers of individuals with Alzheimer’s disease. Psychology and Aging, 6, 392–402. Vitaliano, P.P., Zhang, J. & Scanlan, J.M. (2003) Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin, 129(6), 946–72. Vitanen, T.K. (2005) Informal Elderly Care and Female Labour Force Participation Across Europe (European Network of Economic Policy Research Initiatives Report No. 13). European Network of Economic Policy Research Initiatives, Brussels. Whitlatch, C.J., Feinberg, L.F. & Sebesta, D.S. (1996) Depression in family caregivers: adaptation over time. Journal of Health and Aging, 9, 222–43. Whitlatch, C.J., Zarit, S.H. & Von Eye, A. (1991) Efficacy of interventions with caregivers: a reanalysis. Gerontologist, 31, 9–14. Williamson, G.M. & Schulz, R. (1990) Relationship orientation, quality of prior relationship, and distress among caregivers of Alzheimer’s patients. Psychology and Aging, 5, 502–9. Williamson, G.M. & Shaffer, D.R. (2001) Relationship quality and potentially harmful behaviors by spousal caregivers: How we were then, how we are now. Psychology and Aging, 16, 217–26. Wright, L.K., Clipp, E.C. & George, L.K. (1993) Health consequences of caregiver stress. Medicine, Exercise, Nutrition, and Health, 2, 181–95. Zank, S. & Frank, S. (2002) Family and professional caregivers’ ratings of dementia symptoms and activities of daily living of adult day care patients: Do differences change over time? Aging and Mental Health, 6, 161–5. Zarit, S.H. (1980) Aging and Mental Disorders. Free Press, New York. Zarit, S.H., Dolan, M.M. & Leitsch, S.A. (1998) Interventions in nursing homes and other alternative living settings, in Clinical Geropsychology (eds I.H. Nordhus, G. VandenBos, S. Berg & P. Fromholt). American Psychological Association Books, Washington DC, pp. 329–44. Zarit, S.H. & Leitsch, S.A. (2001) Developing and evaluating community based intervention programs for Alzheimer’s patients and their caregivers. Aging and Mental Health, 5(Suppl), S84–S98. Zarit, S.H., Orr, N.K. & Zarit, J.M. (1985) The Hidden Victims of Alzheimer’s Disease: Families under Stress. New York University Press, New York. Zarit, S.H., Reever, K.E. & Bach-Peterson, J. (1980) Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist, 20, 649–55. Zarit, S.H., Stephens, M.A.P., Townsend, A. et al. (1999) Patterns of adult day service use by family careigvers: a comparison of brief versus sustained use. Family Relations, 48, 355–61. Zarit, S.H., Todd, P.A. & Zarit, J.M. (1986) Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist, 26, 260–70. Zarit, S.H. & Whitlatch, C.J. (1992) Institutional placement: phases of the transition. Gerontologist, 32, 665–72. Zarit, S.H. & Whitlatch, C.J. (1993) Short and long term consequences of placement for caregivers. Irish Journal of Psychology, 14, 25–37. Zarit, S.H. & Zarit, J.M. (2006) Mental Disorders in Older Adults, 2nd edn. Guilford, New York.

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Residential care Bob Woods University of Wales Bangor, Bangor, UK

INTRODUCTION This chapter focuses on communal living environments for older people, where staff roles include the provision of personal care for residents. In the previous editions of this handbook, this chapter was titled ‘institutional care’ (Woods, 1996, 1999). Even then, it was felt necessary to explain that the dictionary definition of an institution as ‘a society or organization founded especially for charitable, religious, educational or social purposes (or the building used by such an organization)’ had been superseded in practice, with the adjective ‘institutional’ having come to imply ‘regimented or unimaginative’, and the verb ‘institutionalize’ to ‘make dependent and apathetic’. The concept of an institution for older people is not a popular one. Internationally, policies emphasize care in the community. Older people themselves almost universally express horror at the thought of ending their days in an old people’s home or a long-stay hospital ward. Families agonize and feel great guilt over decisions to place the older person in such a place. Staff often perceive their jobs as of low value, so morale may be low and recruitment difficult. Institutional care for older people has become, it would appear, irrevocably associated with negative connotations related to decades of care systems that have fulfilled the stereotypes only too well, despite efforts having been made to replace the word ‘institution’ with more acceptable generic euphemisms, such as ‘alternative homes’, ‘residential facilities’ and ‘care homes’. Townsend (1962) described how residential care homes in the UK were ‘the last refuge’ and had changed little in quality from the workhouse system they replaced. In the UK, as in many other countries, there have regularly been notorious scandals involving poor care in residential homes and hospitals for older people with dementia. These have involved units run by the NHS and local authorities as well as those from the private sector. In some instances, physical abuse of residents has been reported (see, for example, report on Elder Abuse of House of Commons Health Committee, 2004, pp. 15–23; Garner & Evans, 2000). Newspapers and TV investigatory programmes feature such scandals from time to time, although the reports from official inquiries appear to have much less impact than those involving child care. A recent investigation into incidents occurring in an NHS facility concluded: ‘The Rowan ward service had many of the known risk factors for abuse: a poor Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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and institutionalized environment, low staffing levels, high use of bank and agency staff, little staff development, poor supervision, a lack of knowledge of incident reporting, a closed inward looking culture and weak management at ward and locality level’ (Commission for Health Improvement, 2003, Executive Summary, pp. 2). There is increasing recognition that care in the community may be just as regimented, impersonal and disempowering as the facilities it was intended to replace. Askham et al. (2007) report a detailed observational study of the experience of care at home for people with dementia, taking Goffman’s (1961) analysis of custodial care and the total institution as a framework for analysis. The key aspects of this are routinization, surveillance and ‘mortification of the self’ (in effect, depersonalization; invalidation of the individual’s identity and roles). People with dementia were indeed subjected to a daily life largely governed by routines, mainly to achieve the tasks of daily care; their movements and behaviour were usually under surveillance, with carers needing to monitor the person to avoid difficult situations developing; and there were instances of the person with dementia being infantilized and denied former roles and activities. However, care at home was not entirely a ‘total institution’ in that carers were typically seeking to balance these aspects with maintaining home life and intimate relationships. In similar vein, although it is tempting to attribute the apathy, inactivity and dependence that are so often observed in care homes to the impact of the institutional environment on the older person, it has been recognized for some time that these aspects commence before admission, while the person is still in the community (Tobin & Lieberman, 1976). They reflect the problems leading to the decision to enter a residential environment, as well as a process of change in the person’s self-perception to one where few, if any, valid social roles remain. The institution may not do enough to combat this process, but it probably does not set it in train. The prevalence of depression is high in care homes, with perhaps 40% of residents without a severe cognitive impairment being depressed (Mann et al., 2000; Mozley et al., 2004). It is also high amongst older people living at home in receipt of community care, with as many as a quarter having a depressive disorder (Banerjee, 1993). Mozley et al. (2004) assessed depression in older people on admission to a care home, and again 5 months later. Most (71%) of the residents who were depressed after 5 months had been depressed on admission, although a significant minority (29%) clearly did become depressed while in the home. Boyle (2005) highlights the importance to older people of having a sense of autonomy in making decisions and choices, wherever they live, and whatever their level of physical disability. In a comparison of older people either living in care homes or receiving care at home, Boyle found that people with physical disability receiving community care reported low autonomy more frequently than those in care homes, and that this appeared to be associated with a high rate of mental health problems. Restrictions and constraints can occur in either type of setting, and contribute to depression. It is possible to debate whether or not, ideally, there should be any institutional care at all; Townsend (1962) argued that many of the drawbacks he identified in residential care arose from the context of communal living with a group of virtual strangers from diverse backgrounds and could not be readily remedied even by more liberal policies. In like manner, advocates of social role valorization (see Stirling, 1996, 2004) have at times argued that because living in an institution is not a valued option, then it should not form part of the care spectrum offered; ‘ordinary living’ is the aim. However, pragmatically, the care system is so dependent on the residential sector that this is not going to be dispensed with in the near future. In the UK, around 6% of over-65s are in some form of institutional care; 1% of

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the 65 to 74 age group but as many as 26% of the over 85s (Peace et al., 1997). The notion that no older person would choose to enter a care home is now also subject to challenge; Oldman and Quilgars (1999) suggest that some older people may in fact see a care home as a positive alternative to feeling themselves to be a burden on their family and friends. Remaining at home and entering a care home will both have their risks and benefits for the older person and both must be carefully considered in each individual case. This chapter takes the view that developing and maintaining a high-quality environment of care – whether based around the person’s own home or in a communal setting – is a challenging task. There is great potential for creativity and innovation and for the application of psychological theory and research in understanding the complex systems involved. Augmenting family care is not sufficient; many of those entering residential care live alone and have outlived close family members. The task, for residential and community care, is to provide both acceptable accommodation and high-quality care. Increasingly models of care are being developed that recognize this dual, complementary function. In the UK, and elsewhere, ‘extra-care housing’ is becoming a popular form of alternative home, essentially providing domiciliary care, in a coordinated manner, to people living in a cluster of selfcontained living units (Evans et al., 2007). Effectively, this aims to reduce the worst aspects of communal living – of sharing ‘home’ with strangers – whilst having the benefits of a care team on-site, day and night, being able to provide more flexible and, when needed, intensive input than is often possible in typical community care packages.

QUALITY IN RESIDENTIAL CARE What characterizes a residential setting of high quality? Anyone who has visited even a few such places will have some ideas as to what differentiates those with a poor quality of care from those where higher standards are achieved. However, the complexity of defining and evaluating care quality is indicated by the surprisingly low agreement on such judgements, even between experienced raters, according to a report by Gibbs and Sinclair (1992).

‘Homeliness’ and Physical Environment An immediate impression may be the ‘homeliness’ of the facility. The size and scale of the unit, the provision of single rooms for residents, the type and style of furnishing, the presence of personal touches and possessions, and the absence of a ‘clinical’ feel or of unpleasant odours may all contribute to this aspect. For example, in a relatively impoverished hospital context, Mountain and Bowie (1992) found that ‘a large number of residents only possessed a core of toiletries . . . and did not have items such as ornaments, pictures or jewellery’. This is an area where major changes have occurred over the last decade. New care homes will certainly offer single rooms, typically with en suite facilities. Large dormitories are no more, although hospital facilities may still require sharing of bed-rooms. Concern remains that arrangements are made for older people that would be unacceptable in other client groups; thus, an eight-bed care facility for people with profound learning disabilities would be considered large, whereas for older people it might be dismissed as too small to be economically viable.

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Levels of Activity and Interaction A fairly immediate indication will be the level of activity and interaction within the home; Ballard et al. (2001) in an observational study of 218 people with dementia, residing in 17 publicly funded and independent sector facilities, concluded that residents spent nearly half of the daytime period of observation either asleep (17%), socially withdrawn or not involved in any type of interaction or activity (30%). Interactions occurred in 14% of the observation periods and activities other than watching TV and watching TV both occurred 3% of the time. Most time was spent in basic task-related activities such as meals and toileting (33%). In the US, Kuhn et al. (2005) found that day-time sleep was more common (19.7%) in people with profound dementia than those with a moderate (8.4%) or mild degree of impairment (2.5%). Innes and Surr (2001) report higher levels of social interactions in six care homes, but with a wide range evident (from 12–34%). Brooker et al. (1998) noted a similar range of social interaction in nine NHS units, with ‘passive interest’ being observed between 9% and 24% of the time. Nolan, Grant and Nolan (1995) also report high levels of passivity and low levels of interaction in a variety of NHS settings for older people. Mozley et al. (2004) observed day-time sleeping occurring for 10% of the time in a sample of 30 care homes, with residents being observed as ‘awake-inactive’ for 23% of the time. Conversations with other residents or staff were observed 10% of the time. Activity, engagement and interaction levels provide a fairly crude index; increasing activity may not reflect an improvement if the residents see the activities as meaningless and irrelevant, or if participation is virtually enforced. The quality of interaction is, of course, as relevant as the quantity (Brooker, 1995); this consideration has led to the development of measures such as Dementia Care Mapping (DCM) (Brooker, 2005; Kitwood & Bredin, 1992) and the Quality of Interactions Schedule (Dean, Proudfoot & Lindesay, 1993) designed to address the quality dimension as well as the quantitative aspect. Mozley et al. (2004) conclude that good quality care homes offer residents opportunities for occupation, with pleasurable activities that are appropriate and valued.

Staff Attitudes Arguably the most important indication of the quality of the care home comes from observing the attitudes and behaviour of staff to the recipients of care. Are residents treated as individuals, unique people with their own needs and preferences, or en bloc, as if all have the same needs? Are residents treated with respect and efforts made to preserve dignity? Are residents addressed as adults, or are they talked down to in a patronizing, infantilizing, devaluing fashion? Are explanations given regarding care procedures and choices offered, or is the person treated as a passive, inanimate object to be cleaned and changed in a dehumanizing manner? Kitwood (1996, 1997) describes a person-centred care approach, emphasizing respect for the individuality, value and worth of the person with dementia (see also Brooker, 2004). Using methods such as DCM (Brooker, 2005), indicators of quality based on these considerations can be constructed. Care settings will differ markedly in their quality, reflected in these attributes, and, at least in principle, improvements in quality of care should be

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attainable, for example from an audit cycle involving feedback and action planning (Brooker et al., 1998). This is not a universally accepted view. Booth’s (1985) major comparative survey of residential homes found: ‘the differences between regimes are little more than a veneer on the massive uniformity of institutional life. The common features of residential institutions are so dominant in their effects as to mask or suppress any influence that small differences in the social environments of homes exert’ (Booth, 1985, p. 234). Ballard et al. (2001) and Kuhn et al. (2002) are amongst those who have used Dementia Care Mapping (DCM) to evaluate the quality of care environments. In both studies, a range of overall average wellbeing scores were obtained. The significance of particular levels has yet to be ascertained, although a relationship with severity of dementia does appear to occur, at least initially (Brooker et al., 1998). These studies raise the question of the extent to which the quality of the care environment can be simply assumed from the average well-being or quality of life of the individual residents. Quality of life may be related to other factors apart from quality of care, and observational approaches such as DCM emphasize public, observable aspects and are less able to take into account pleasurable activities outside the home, or inner mental events, for example. It may be that as cognitive impairment increases, the quality of care received approximates to quality of life, but observable wellbeing may not be sufficient as the only index. The characteristics of the residents and factors such as staffing levels and community integration also need to be considered. In the next section some of the international research on improving the quality of the care environment will be reviewed. It will become clear that achieving high quality in care for people with dementia is an intricate task, requiring inputs at many levels; it is a goal that must not be abandoned simply because of its complexity. The emphasis here on environments specifically for people with dementia is justified in view of Lawton’s ‘environmental docility’ model (Parmelee & Lawton, 1990), which suggests that the person with lowered competence and function is more likely to be shaped by and vulnerable to environmental contingencies. Older people with intact cognitive function are thought to be more able to themselves shape the environment to suit their individual needs; people with dementia are much more at the mercy of their physical, social and interpersonal surroundings. From a study of 88 care facilities in Canada, Bravo et al. (1999) concluded that higher level of cognitive impairment in a care setting is the major predictor of lower quality of care. In the UK, it appears that the majority of nursing home residents have dementia – Macdonald et al. (2002) reported that people with dementia constituted 74% of residents of homes which were not designated as specialist homes for people with dementia. In the US, 50% of nursing home residents have moderate to severe dementia, as do between 23 and 42% of residents of residential care / assisted living facilities (Zimmerman et al., 2003).

IMPROVING THE CARE ENVIRONMENT FOR PEOPLE WITH DEMENTIA Special Care Units Special care units for people with dementia were identified by Carr and Marshall (1993) as an important area of development internationally. However, there is no agreed definition

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of what comprises a special care unit. Typically, it would offer care only to people with dementia, would be relatively small and domestic in scale and style, and would have single rooms for residents, access to the outdoors and separate activity rooms (Day et al., 2000; Teresi et al., 2000). However, in the US, Sloane et al. (1995) quote an average size of 35.9 residents, with only a quarter of units containing 19 or fewer residents. A typical development in France involved small homely units for dementia care described as cantou, a word meaning ‘hearth’, reflecting that home is around the fireside (Ritchie et al., 1992). These often had one large communal room, with the residents’ bedrooms and bathrooms etc. opening off the main room, dispensing with confusing corridors and reducing the load on spatial memory. The kitchen area might typically be in a corner of the communal room, with food preparation a central interest and activity. In the UK, having the kitchen accessible to residents, having the same staff involved in cooking and resident care and involving residents in food preparation might well all be seen as impossible in view of hygiene and safety standards. Could such standards be balanced against a higher quality of life? In the UK, the best described special care units were those following the ‘domus philosophy’ (Lindesay et al., 1991), aimed at tackling staff attitudes and fears which lead to poor quality of life for people with dementia. Emphasis was given to seeking to maintain the independence and preserved abilities of the person with dementia, through having an active role in the life of the domus. In Sweden, ‘group living homes’ were developed, typically consisting of a group of four flats in an ordinary housing block, in which eight people with dementia live, each having their own room and possessions, with 24-hour staff cover for the unit as a whole. Wimo et al. (1991) indicate that such a project can be a cost-effective alternative to institutional care, with anecdotal reports of enhanced function. Such units are unable to manage severe physical disabilities, which may be a problem as a resident’s condition deteriorates, with a number of residents eventually moving on to nursing-home or hospital-type placements in view of decline in physical health and mobility (Malmberg & Zarit, 1993). In contrast the domus units initially aimed to provide a home for life. However, in most other countries, special care units are seen as not able to manage the more severe manifestations of behavioural problems or of physical frailty (Sloane et al., 1995). This difference may reflect the fact that in the UK special care units were largely developed to replace long-stay psychogeriatric hospitals, whereas elsewhere it has been the problems of managing relatively physically fit, ambulant, active people with dementia in a nursing-home setting that have fuelled the development of new models of care. Buchanan et al. (2005) indicate that people with dementia admitted to special care units in the US have more cognitive decline and more behavioural problems than those admitted to ordinary nursing homes, who are more likely to have greater physical disability and other serious physical health problems. Reilly et al. (2006) point out that homes in England describing themselves as specialist ‘EMI homes’ (homes for Elderly people with Mental Ill-health problems) differ little in practice from their nonspecialist counterparts. The few differences found were in design features, aimed primarily to assist orientation and give secure outside access, and in support for families. This may reflect the high proportion of people with dementia in both types of home, of course. In the US, a major emphasis is now on residential care / assisted living facilities as a less institutional alternative to nursing homes (Zimmerman et al., 2003), providing care, accommodation and monitoring for those not requiring the medical services of the nursing

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home. In the UK, extra-care housing developments have begun to separate the housing and care components, providing clusters of accommodation with a dedicated care team, offering an alternative home where the required care is readily available and accessible. The extent to which these schemes will specialize in dementia care remains to be seen. In an evaluation of some of the early schemes that have included people with dementia, Evans et al. (2007) report that independence is the major factor in quality of life of residents of such schemes; this includes the ‘freedom to come and go’, the opportunity of ‘doing things for themselves’ and having ‘choices about how to spend time’. Dementia-friendly design and staff training were seen as important in facilitating these benefits for people with dementia.

The Physical Environment Although changes in the care approach may be the priority in improving the quality of care, clearly the design of the building can have some influence both on the way care is provided and on the residents more directly, if only by constraining and shaping what may be attempted. Keen (1989), in reviewing architectural influences, argues there has been little consideration given to the contribution the buildings themselves might make to the problems. Day et al. (2000) provide a systematic review of research since 1980 on the relationship between the design of the physical environment and the well-being of people with dementia, their families and/or staff. Although the results of the research reviewed are not definitive, as this is a complex area to research, their recommendations include:

r Provide small size units; for example, Bravo et al. (1999) report that ‘facilities housing r r r

r r r r r

a large number of residents tend to experience more difficulties in caring for those with cognitive deficits’. Provide separate provision for people with dementia. Ensure noninstitutional design throughout, especially in dining rooms; the impact on mealtimes of a homely dining room has emerged as especially important. Provide moderate levels of environmental stimulation; there is a tension between reducing over-stimulation which distracts and adds to agitation, and the risk of sensory deprivation, with nothing of interest happening to attract the attention or engagement of the person with dementia. Reducing unnecessary traffic through the unit, or removing sources of unpleasant noises, such as alarmed doors or having TV, radio and music systems operating simultaneously, is a good start. Increase bright light levels: many care homes have inadequate lighting (Teresi et al., 2000), to the extent that the person’s circadian rhythms may be disrupted. Exposure to natural light is of course also important. Place covers over panic bars on doors and door knobs to reduce the risk of the person accidentally leaving the unit. Make secure outdoor areas accessible, so that residents can go outside safely. Make toilets more visible, through location and signage; incontinence may be reduced when people with dementia can readily find the toilet. Reduce the stress of bathing; avoid unfamiliar equipment, noisy, cold waiting areas and tubs with high water levels; make the bathroom a warm, relaxing area, rather than a cold, clinical room.

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Parker et al. (2004) studied the building design of 38 care homes, and concluded that choice and control were especially important to the well-being of residents. Access to indoor and outdoor spaces and facilities was an important aspect of control, as was support for the physical frailties of residents. Connection to the wider community was associated with activity levels. Support for cognitive needs of residents, such as sensory stimulation and way finding, related to an index of residents’ wellbeing. Interestingly, staff morale was associated with having a noninstitutional environment for the residents rather than being related to facilities for the staff. Parker et al. (2004) also note that a focus on health and safety requirements could reduce the quality of life of residents, particularly those who were less frail. A strict interpretation of such regulations makes it difficult to provide a ‘homely’ environment. In the UK, regulations for the registration of care homes are such that compromises are necessary, to meet stringent fire and hygiene standards, for example. The same issues have arisen in the US, where Lawton (1994) describes ‘homelike’ furnishings as having become obsolete because of such stipulations. In the US, Zeisel et al. (2003) evaluated the relationship between environmental characteristics and resident behaviour in 15 Special Care Units, involving 427 residents. From multivariate analyses, controlling for resident characteristics, such as severity of cognitive impairment, five environmental dimensions emerged as salient. The greater the extent to which the unit offered private, personalized space, the less anxiety, aggression and psychotic problems were reported. The more the common rooms showed variability, in d´ecor, furniture and lighting, the less social withdrawal by residents was noted. Environments that were more residential and homelike and less institutional were associated with lower levels of overall aggression. Where understandable and controllable sensory inputs were provided there was less verbal aggression and fewer psychotic problems. These environments had lower levels of background noise and featured familiar and meaningful sensory inputs. Finally, exit design appeared important; residents in units with well-camouflaged exits and silent electronic locks (without alarms) tended to be less depressed. Evidence is, then, accumulating on design features that make a difference in dementia care. The mechanism of influence remains to be clarified. The effects could be direct, such as low background noise levels having a calming effect; or more indirect, perhaps with staff attitudes responding to working in a more homely environment.

The Care Environment Much more empirical research on the effects of changing the pattern of care is available. In Sweden, several studies have evaluated changes of regime, involving a move towards greater choice and autonomy. For example, Brane et al. (1989) evaluated ‘integrity-promoting care’, which involved staff in a nursing home being trained and supported in implementing individualized care, with residents encouraged to participate more in decisions and activities, and allowed to go at their own pace. Changes to the physical environment aimed at achieving a more homelike atmosphere with domestic-style furnishing and personalized clothing and possessions. Changes over the three-month intervention period and at a follow-up six months later were compared with those of a control group in a second nursing home. The integrity-promoting care group were reported to have become less confused, anxious and

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distractible and there were also improvements in mood and motor performance. Many of the benefits remained at the follow-up evaluation. The special care units described above have been evaluated in several countries. In France, Ritchie et al. (1992) report an evaluation of the impact of the cantou units; in Sweden, a detailed evaluation of group-living units has been reported by Annerstedt, Gustafson and Nilsson (1993); in the UK, several evaluations of domus units have been published (Lindesay et al., 1991; Dean, Briggs & Lindesay, 1993; Dean, Proudfoot & Lindesay, 1993; Skea & Lindesay, 1996). In France and Sweden, the benefits appeared to be mainly in the early stages; for example, in Sweden, the group-living group showed cognitive and mood improvements over a six-month period, compared with a group of people with dementia remaining in institutional care; although both groups declined over a full year, there were indications of this being less marked in the group-living residents. In the UK, areas of improvement associated with the domus units included cognitive function, self-care and communication skills, activity levels and interactions with staff. The improvements in quality of life in domus units did have a cost: staff-resident ratios were higher than in the hospital wards they replaced, and the costs were accordingly higher (Beecham et al., 1993). In contrast, the cantou units in France were established in part to lower the costs of care. Although there are some promising indications, as Sloane et al. (1995) demonstrate, this is a very difficult area in which to carry out well controlled research, in view of the many interacting factors and sources of potential bias operating. For example, the evaluation of the cantou may have been confounded by differences in the type of residents admitted to the two types of care being compared. Livingston et al. (2005) conclude from a systematic review of the effects of a variety of psychosocial interventions on neuropsychiatric symptoms in dementia that the evidence for the effects of group living and environmental interventions, in this respect at least, is inconsistent and inconclusive.

CARE STAFF – THE KEY TO QUALITY Influences on Staff In practice, high quality in residential care is elusive and it is typically difficult to implement lasting changes. Even special care units have been described by Gold et al. (1991) in the US as ranging in quality from the excellent to the ‘execrable’. All seven NHS care facilities included in the DCM study reported by Ballard et al. (2001) were described as requiring ‘radical changes’ in the quality of care provided. Clearly the attitudes and behaviour of the care staff must change if quality is to be achieved, but first it is important to understand the complex interacting factors that influence the care staff, and help or obstruct the process of change and development. Amongst these, as Innes (2002) points out, it must be remembered that care workers are undervalued and lack status in society, are poorly paid and are often offered little training and experience poor conditions of work. Any institution is a complex system, or rather a set of overlapping and interlocking systems. Moos and Schaefer (1987) describe the influences on an individual member of staff as arising from two major systems:

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1. Environmental system: (a) organizational physical/architectural aspects of the home structure and policies of the home work social climate (b) non-work stressors and resources 2. Personal system: (a) work related type of job and work role (b) nonwork personal resources – self-esteem, values, intellectual abilities sociodemographic characteristics The cognitive appraisal of these two systems and of their interaction by the staff member influences the person’s coping responses and accordingly their work performance and morale, and so ultimately the quality of care and resident outcomes. At any and every stage of this process, reciprocal feedback can occur, and all processes are seen as transactional. Moos and Schaefer emphasize the importance of the work social climate, the ‘atmosphere’ of the workplace, in relation to staff morale. This is evident, for example, when a member of staff reports that the residents are no problem, for all the complexity and diversity of their care needs, and that it’s the other staff who make life difficult! A number of influences on the work climate are described. The staff group and their characteristics, values, commitment to the work and client group, personality and communication skills are clearly important in relation to the extent to which staff are friendly to and support each other. However, also important are the organizational structure and policies and the clarity with which these are communicated. The style of management is also influential; this may range from controlling to supportive, and from high-pressured to encouraging autonomy, with staff making their own decisions. Finally, the physical surroundings make an important contribution to a pleasant workplace. Several aspects of this model are worthy of comment: 1. The impact of non-work stressors and resources, and their two-way relationship, are acknowledged. The work performance of a member of staff who is under stress outside work may well be affected; stress at work may well impact on the staff member’s personal life and relationships. The care home does not have impervious boundaries. 2. The role of cognitive appraisal is highlighted; it is the person’s perception of the policies or the management style or whatever which are important. For example, Benjamin and Spector (1990) asked staff in three different care facilities to rate a number of potential stressors; staff in a unit where the philosophy encouraged staff to express their emotional needs rated items relating to communication difficulties with residents, or residents being unresponsive, as particularly stressful, compared with staff in units where physical care was given emphasis. Staff appraisals of what is expected of them are likely to influence areas of tension and stress. 3. The individual’s values and personal characteristics are seen as interacting with organizational factors. Different people may benefit from different management styles, say; some may prefer more autonomy, others a more hierarchical structure. Job satisfaction and morale must be seen as an interaction between an individual’s needs from the work

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setting and the environment, not a fixed feature of the workplace. Wright (1988) argues that negative attitudes among staff in nursing homes are determined by the socio-cultural environment of the nursing home; it is not that staff simply bring with them negative attitudes towards older people, rather that the culture and ethos of the home, characteristics of the staff group as a whole and the nature of the residents’ difficulties interact dynamically to shape the repertoire of available skills, coping strategies and management techniques of staff members which ‘translate attitudes into actions’. Baillon et al. (1996) indicate that organizational factors may be as stressful for staff as caring for residents and the need for a careful consideration of the whole system is reinforced by MonizCook et al. (1997) who suggest each home may need an individualized staff development programme. 4. The type of work, the interaction with residents, and the problems to be dealt with have an influence on the environmental and personal systems, but again are subject to cognitive appraisal. Thus, the staff member’s perception of a resident’s challenging behaviour, say, verbal abuse, will affect its impact on their morale; it will make a big difference, for example, if it is seen as directed at them personally, rather than as arising from their condition. Brodaty et al. (2003) reported that nursing home staff often thought that difficult behaviour was deliberate, rather than an aspect of the dementia.

Social Climate Mozley et al. (2004), from their study of 30 care homes in England, conclude that good quality care homes are those low in conflict (where staff report that residents do not express anger or criticize each other or the home) and high in cohesion (the extent to which staff see themselves as helpful to residents and residents are helpful to each other). Moniz-Cook, Woods and Gardiner (2000) similarly found that staff who report being able to relate to residents as individuals and being able to offer help and support to them find difficult behaviour less challenging. Cole et al. (2000) report that the psychological wellbeing of staff is related to the level of staff support in the home.

The Staff-family Relationship One gap in the model that should be highlighted is the role of relatives. Staff, at times, identify their relationship with relatives as more problematic than that with residents. Relatives may be seen as constantly critical, or interfering, or as having abandoned the resident. For their part, relatives may be experiencing considerable stress (Gaugler, 2005a; Zarit & Whitlatch, 1993) and guilt feelings may be strong (Woods, 1997; Woods & Macmillan, 1994). There is some evidence that relatives’ distress is related to negative perceptions of staff functioning, and negative interactions with staff. There have been numerous attempts made to establish a more collaborative, partnership relationship between staff and relatives (see Gaugler, 2005b; Woods, Keady & Seddon, 2007). From Gaugler’s (2005a) review, it is clear that, in general, families do remain involved and, far from abandoning the person with dementia, they visit, and continue to visit, although this is made less easy by the changes brought about by dementia. Family members take on a variety of roles. They provide companionship, they are especially concerned to preserve

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the identity of the person with dementia and they advocate for the person with dementia. Some relatives wish to provide hands-on, direct care, and this may lead to tension with staff regarding whose responsibility a particular task is. Care homes that see themselves having a role in meeting the needs of family members are most likely to achieve a collaborative partnership with families. Family involvement may also be linked to important outcomes for the person with dementia. For instance, in a large study in the US of 400 residents with dementia, Dobbs et al. (2005) found that people with dementia were more likely to be engaged in activity when the family are involved in engaging socially with the resident and when the home involves them in the assessment of the person’s preferences. From the same study, Zimmerman et al. (2005a) report that family involvement is significantly associated with some aspects of quality of life for the person with dementia.

Job Satisfaction A large-scale study of nurses’ job satisfaction and quality of care received by people cared for in hospital psychogeriatric wards reported by Robertson et al. (1995) adds support to this type of model. They identified a strong relationship between nurses’ job satisfaction and quality of care (evaluated through direct observation). However, they concluded that this association was best understood as arising from ward and hospital management practices, contributing to both quality of care and staff morale, with the latter two variables then reinforcing each other through a mutual feedback system. Thus high quality of care may lead to high job satisfaction, which may lead to higher quality of care and so higher job satisfaction, and so on. The association between staff job satisfaction and quality of care is reinforced by Jenkins and Allen (1998) who found that in two homes, staff with a higher sense of personal accomplishment were observed to interact more with residents, whereas those reporting more involvement in decision making in the home had fewer negative interactions. Conversely, staff who have higher levels of anxiety also report greater difficulty in managing challenging behaviour (Moniz-Cook, Woods & Gardiner, 2000). Thus whilst challenging behaviour may be one factor that makes the job stressful for staff and reduces job satisfaction, staff perceptions are also important.

Staff Stress and Burnout There has been particular concern that staff burnout might lead to poor-quality care. Burnout involves physical and emotional exhaustion, demoralization, negative job attitudes and loss of concern for clients; it may affect the staff member outside the work setting as well as within it. It is sometimes thought of as arising from intense involvement over a long period of time, perhaps with difficult clients, where improvements are limited or nonexistent, and where there is little support from colleagues and superiors. In the UK, several studies have used versions of the General Health Questionnaire (GHQ), a general screening measure for distress, to evaluate levels of staff stress. Macpherson et al. (1994) administered the GHQ to 188 staff working in a varied sample of 16 institutional care settings for older people. Just over a quarter of the predominantly female

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sample were over the threshold for ‘caseness’. However, when compared with population norms, the authors concluded that these staff were no more subject to emotional upset than the general population. The authors caution that, although their response rate was fairly good (67%), it may be that more stressed individuals chose not to respond, or were already on long-term sick leave (as were half the care staff in one old people’s home). Similar levels of ‘caseness’ using the GHQ with residential care staff have been reported by staff of two out of three homes evaluated by Baillon et al. (1996). In the third home, which had been under threat of closure, 63% scored above the relevant GHQ cut-off point. Mozley et al. (2004) report data from 440 staff members drawn from 30 care homes in England. Using a brief version of the GHQ (the GHQ-12), only 15.7% of the sample were ‘cases’, a proportion similar to the general population level on this measure. However, the response rate in this survey was relatively low (37%). Caseness in the GHQ was associated with having experienced a major life event during the previous six months and being aged less than 30. Higher GHQ scores were correlated (at a modest level) with a number of features of the work climate such as more role conflict, less clarity about roles, less support from leaders, more work demands, less control and autonomy in the job. Less than a tenth reported having received any training in care of people with dementia, or depression or in terminal care. Macpherson et al. (1994) found that GHQ scores were positively related to staff reports of assaults by residents over the previous week, and distressed staff were more likely to report shouting back at aggressive residents and to feel less supported at work. The association of higher levels of distress both with higher reported levels of assaults by residents and greater likelihood of shouting back could reflect the likely vicious-circle interaction of the staff member’s mood and behaviour with their perceptions of the resident’s behaviour. However, other studies have reported no association between staff stress and level of behavioural disturbance (Brodaty et al., 2003; Cole et al., 2000); it may be that the severe challenge posed by an assault is particularly stressful. Moniz-Cook, Millington and Silver (1997) also report different levels of distress among staff in different homes, and indicate that moderate levels of burnout may be reported even where GHQ scores are low. It can be argued that one way of protecting against distress arising from burnout is to distance oneself from the care recipients, not to become involved in their lives or to empathize with them. Someone adopting such a distancing coping strategy might appear to have some aspects of burnout (negative job attitudes, low involvement with residents) but without any emotional distress. For example, Brodaty et al. (2003) found that staff with more negative attitudes had lower stress levels, as well as lower job satisfaction. On the other hand, someone initially with high empathy, an ability to identify with the residents’ experience, might develop burnout, which would reduce their ability to empathize, but would be accompanied by emotional and somatic upset. Astrom et al. (1990) reported that just over a quarter of a sample of 557 nursing staff working in dementia care in Sweden were assessed as being at risk of burnout. Qualified nursing staff had lower levels of burnout than nurses’ aides. A weak negative correlation was identified between burnout and empathy. Higher empathy scores were related to more positive attitudes (Astrom et al., 1991). In Canada, Chappell and Novak (1992) interviewed 245 nursing assistants in long-term care homes for elderly people. Burden and burnout levels were thought to be high and were more likely in those reporting that they lacked a sense of reward in their job. Training in work with residents with cognitive impairment appeared to be related to lower feelings of burnout and perceived job pressure, although neither the proportion of residents with cognitive

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impairment being cared for nor residents’ behavioural problems related to burden. Support from family and friends was another ameliorating factor. Perceived workload was a major source of stress, and Chappell and Novak (1992) join with Astrom et al. (1990) in calling for lower workloads to reduce the burden on staff. Benjamin and Spector (1990) similarly reported that ‘there have been insufficient staff on duty’ was the item most frequently rated as stressful in their study of three different care environments.

Staff Attitudes The importance of staff attitudes in relation to residents’ quality of life is highlighted in a large study reported by Zimmerman et al. (2005a), involving 421 residents in 45 residential care/assisted living facilities and nursing homes in the US. The Approaches to Dementia Questionnaire (Lintern et al., 2000a) was used to evaluate staff attitudes; this scale has two subscales, reflecting recognition of personhood and hopefulness regarding dementia respectively. The authors concluded that ‘from the resident’s perspective, quality of life was higher for those in facilities . . . whose care providers felt more hope’ (pp. 144). As well as being related to two resident self-report quality of life measures, hope was also related to DCM observations of wellbeing. The total ADQ score and recognition of personhood attitudes were also related to staff reports of the quality of life of the person with dementia. Similarly, Spector and Orrell (2006) reported that in care homes in the UK where staff had lower average scores on the hopefulness scale of the ADQ, residents rated their quality of life as lower. Todd and Watts (2005) also found that optimism regarding the potential for the person with dementia to change was related to greater willingness to help the person and lower burnout. Zimmerman et al. (2005b) reported that attitudes recognizing personhood were related to job satisfaction, in particular enjoyment of contact with residents. Staff who perceived themselves to be better trained in dementia care reported more person-centred attitudes and more job satisfaction.

CHANGING STAFF ATTITUDES AND BEHAVIOUR Interventions for Staff In considering the evaluation of any service it is helpful to consider three components: structure, process and outcomes. In this analysis, the physical environment and philosophy of care form part of the given structure and among the outcomes discussed above are aspects thought to contribute to residents’ quality of life such as residents’ functional level, activity and interaction. Outcomes relating to relatives have also been evaluated (for example, Woods & Macmillan, 1994) but might be seen as secondary (but to some extent related) to residents’ quality of life. Outcomes for staff, on the other hand, are essentially process measures, important means to the desired outcomes for residents. The central issue in improving the quality of residential care is how to make a difference to staff behaviour, as the key aspect of service delivery. Moos and Schaefer’s model suggests that a wide range of interventions could make a difference, but that a multilevel approach will be required

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for the best chance of success. Unless structural changes succeed in making a difference to staff outcomes, their impact on residents with dementia is likely to be limited. There appear to be two main approaches to staff training in this field (see also Chapter 34, this volume). One emphasizes skill development and behavioural change; the other focuses on attitude change, enhancing empathy with the person with dementia and a person-centred care approach, with the implicit assumption that change in these aspects will lead to changes in the delivery of care. The former approach is exemplified by the training in communication and behaviour management skills described and evaluated by Burgio and colleagues (Burgio et al., 2001, 2002). This involves staff receiving immediate feedback on performance during training, and subsequently a management and reward system for staff that reinforces the maintenance of the skills learned. The attitude-based training is illustrated in the training study reported by Lintern et al. (2000a,b), where all staff received two days of training in the person-centred approach. Training models such as the STAR programme developed by Teri et al. (2005) incorporate a mix of skill development and work on reinforcement of values of dignity and respect. Mackenzie and Peragine (2003) report a training intervention to enhance self-efficacy in staff working with people with dementia. This included modules on team-work and working with families, as well as on managing challenging behaviour, as these were the three areas identified as significant sources of stress. Knowledge and self-efficacy increased following the intervention, and there were short-term reductions in burnout. Hallberg and Norberg (1993) report introducing regular systematic clinical supervision together with implementation of individualized care planning on an experimental dementiacare ward, and comparing the impact on staff over a 12-month period with a control group of staff on another similar ward. The results indicated that nurses’ burden in caring for people with severe dementia reduced; positive changes were mainly in aspects of the relationship between the nurse and the person with dementia. Berg, Hansson and Hallberg (1994) elaborate on these findings. Creativity and a climate of innovation improved significantly among nurses on the experimental ward; there was no change on the control ward. Importantly, nurses’ sense of tedium and burnout decreased significantly. Hallberg and Norberg (1995) suggest that the intervention helped nurses to see residents’ lives as meaningful and opened the way to achieving cooperative relationships with individual residents. Following the training input in Lintern et al. (2000a,b) study, changes in both the expressed attitudes of staff, on the ADQ, and in care practice were identified. There were a number of improvements in observed quality of care. These included staff interacting more with residents and offering more opportunities for engagement in activities. In addition, improvements in key indices of the quality of the delivery of personal care were observed. The ADQ appears to be an example of an attitude scale that predicts actual behaviour.

Positive Outcomes for Staff These findings are important in indicating ways in which positive staff outcomes may be achieved. However, these may be viewed as secondary to positive outcomes for residents. Some of the studies on new developments in dementia care reporting benefits to residents have also included staff measures. For example, in Sweden, Alfredson and Annerstedt (1994) report the outcome for staff of the change to group living discussed above, which had positive effects on the residents involved. They report that training and ongoing support/supervision

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for staff in the group living schemes resulted in increased knowledge and new emotional and social attitudes, increased motivation, job satisfaction and quality of work compared with staff in traditional institutions. Staff job satisfaction and morale have also been evaluated in relation to the domus evaluations described previously (Dean, Briggs & Lindesay, 1993; Lindesay et al., 1991; Skea & Lindesay, 1996). The acknowledgement of staff needs in the domus is perhaps reflected in their reporting higher levels of job satisfaction than staff in the hospital wards from where the residents moved. Dean et al. comment that this higher morale may be related to the higher staff-resident ratio in the domus, staff appreciation of the competence of their supervisor and managers, staff freedom to make decisions and do their job in their own way, knowing that what they said was important and valued, and gaining a strong sense of accomplishment from being kept busy using all their skills to help others. In the most recent study (Skea & Lindesay, 1996) the improvement was apparent only after 12 months; there may be a need for a ‘settling down’ period with any innovation. Finnema et al. (2005) report the implementation of ‘emotion-oriented care’ in 14 nursing homes in the Netherlands. This involved staff receiving from two to nine days of additional training, including developing skills in life history work and empathic communication. Staff who perceived improvements in their emotion-oriented care skills following training reported reduced psychological stress, on the GHQ, over a seven month period. In such complex multifaceted interventions, teasing out the process of change is virtually impossible; however, the general assumption is that resident outcomes arise from changes in staff behaviour and that staff attitude change will be a necessary prerequisite for this. It is also possible, of course, that staff attitudes will change when they observe changes in the resident from an intervention. However, seeing is not always believing. In the US an effective method to reduce levels of incontinence in nursing homes has been developed: ‘prompted voiding’ (Schnelle et al., 1993). Its efficacy has been shown in a number of studies. It involves a little extra input from staff but demonstrably reduces the number of times a resident has to be changed out of wet clothing – a benefit for all concerned. Time after time the research team report that as soon as the demonstration programme is over, staff stop carrying out the required procedures, despite extensive training and clear feedback on the approach’s success. The team have now developed a ‘quality control’ procedure, involving regular checks on practice, which maintains the programme much better than general exhortations and demonstrations.

CONCLUSION As Kuske et al. (2007) point out, there is little rigorous evidence on the effects of training programmes for staff in residential care. Many intervention programmes (see Chapter 31, this volume) rely on staff in care homes for their delivery but do not evaluate whether staff behaviour and attitudes do actually match the intended approach. When training programmes are evaluated in terms of their effects on staff, they often prove insufficient alone to change staff behaviour and practices, and methods of monitoring and reinforcing appropriate practice on an on-going basis are recommended to maintain staff performance (Burgio & Burgio, 1990; Kuske et al., 2007). To an extent, Dementia Care Mapping (DCM), the detailed observational method developed by Kitwood and Bredin (1992), can be used in this way (Brooker et al., 1998; see also Chapter 34, this volume). Using DCM, staff may be

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able to gain a sense of ownership over the monitoring process, rather than it being perceived simply as a management tool. This is aided by training staff in the mapping methods and perhaps involving them in mapping other units. By giving feedback on the performance of a staff-group rather than on an individual staff member’s behaviour, there is scope for staff to work together on action plans for change. An important function of management in residential settings is to set clear expectations and, just as importantly, to indicate their importance by monitoring regularly and systematically the extent to which these standards are being met. It is tempting to blame staff attitudes for all the problems encountered in residential care but it is the framework provided by the structure, policies and management of the home that allows negative attitudes to take hold, or conversely nurtures positive attitudes, encourages creativity, supports staff and recognizes each resident and staff member as an individual person. Person-centred care (Kitwood, 1997) will be more demanding on staff, requiring a greater degree of empathy and identification with the person with dementia, a closer human relationship to elicit and nurture wellbeing in the person with dementia; if it is to be achieved, there is an even greater requirement for sensitive management structures within organizations to provide the clarity of communication, supervision and support that staff will undoubtedly require.

REFERENCES Alfredson, B.B. & Annerstedt, L. (1994) Staff attitudes and job satisfaction in the care of demented elderly people: group living compared with long-term care institutions. Journal of Advanced Nursing, 20, 964–74. Annerstedt, L., Gustafson, L. & Nilsson, K. (1993) Medical outcome of psychosocial intervention in demented patients: one-year clinical follow-up after relocation into group living units. International Journal of Geriatric Psychiatry, 8, 833–41. Askham, J., Briggs, K., Norman, I. & Redfern, S. (2007) Care at home for people with dementia: as in a total institution? Ageing & Society, 27, 3–24. Astrom, S., Nilsson, M., Norberg, A. et al. (1991) Staff burnout in dementia care: relations to empathy and attitudes. International Journal of Nursing Studies, 28, 65–75. Astrom, S., Nilsson, M., Norberg, A. & Winblad, B. (1990) Empathy, experience of burnout and attitudes towards demented patients among nursing staff in geriatric care. Journal of Advanced Nursing, 15, 1236–44. Baillon, S., Scothern, G., Neville, P.G. & Boyle, A. (1996) Factors that contribute to stress in care staff in residential homes for the elderly. International Journal of Geriatric Psychiatry, 11, 219–26. Ballard, C., Fossey, J., Chithramohan, R. et al. (2001) Quality of care in private sector and NHS facilities for people with dementia: cross-sectional survey. British Medical Journal, 323, 426–7. Banerjee, S. (1993) Prevalence and recognition rates of psychiatric disorder in the elderly clients of a community care service. International Journal of Geriatric Psychiatry, 8, 125–31. Beecham, J., Cambridge, P., Hallam, A. & Knapp, M. (1993) The costs of domus care. International Journal of Geriatric Psychiatry, 8, 827–31. Benjamin, L.C. & Spector, J. (1990) The relationship of staff, resident and environmental characteristics to stress experienced by staff caring for the dementing. International Journal of Geriatric Psychiatry, 5, 25–31. Berg, A., Hansson, U.W. & Hallberg, I.R. (1994) Nurses’ creativity, tedium and burnout during 1 year of clinical supervision and implementation of individually planned nursing care: comparisons between a ward for severely demented patients and a similar control ward. Journal of Advanced Nursing, 20, 742–9. Booth, T. (1985) Home truths. Gower, Aldershot. Boyle, G. (2005) The role of autonomy in explaining mental ill-health and depression among older people in long-term care settings. Ageing and Society, 25, 731–48.

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Brane, G., Karlsson, I., Kihlgren, M. & Norberg, A. (1989) Integrity-promoting care of demented nursing home patients: psychological and biochemical changes. International Journal of Geriatric Psychiatry, 4, 165–72. Bravo, G., De-Wals, P., Dubois, M.F. & Charpentier, M. (1999) Correlates of care quality in longterm care facilities: a multi-level analysis. Journal of Gerontology: Psychological Sciences, 54B, P180–P188. Brodaty, H., Draper, B. & Low, L.-F. (2003) Nursing home staff attitudes towards residents with dementia: strain and satisfaction with work. Journal of Advanced Nursing, 44, 583–90. Brooker, D. (1995) Looking at them, looking at me; a review of observational studies into the quality of institutional care for elderly people with dementia. Journal of Mental Health, 4, 145–56. Brooker, D. (2004) What is person-centred care in dementia? Reviews in Clinical Gerontology, 13, 215–22. Brooker, D. (2005) Dementia Care Mapping: a review of the research literature. Gerontologist, 45(Special Issue 1), 11–18. Brooker, D., Foster, N., Banner, A. et al. (1998) The efficacy of Dementia Care Mapping as an audit tool: report of a three-year British NHS evaluation. Aging and Mental Health,2(1), 60–70. Buchanan, R.J., Choi, M., Wang, S. et al. (2005) Nursing home residents with Alzheimer’s disease in special care units compared to other residents with Alzheimer’s disease. Dementia, 4, 249–67. Burgio, L.D., Allen-Burge, R., Roth, D.L. et al. (2001) Come talk with me: improving communication between nursing assistants and nursing home residents during care routines. Gerontologist, 41, 449–60. Burgio, L.D. & Burgio, K.L. (1990) Institutional staff training and management: a review of the literature and a model for geriatric, long-term care facilities. International Journal of Aging & Human Development, 30(4), 287–302. Burgio, L.D., Stevens, A., Burgio, K.L. et al. (2002) Teaching and maintaining behavior management skills in the nursing home. Gerontologist, 42, 487–96. Carr, J.S. & Marshall, M. (1993) Innovations in long-stay care for people with dementia. Reviews in Clinical Gerontology, 3, 157–67. Chappell, N.L. & Novak, M. (1992) The role of support in alleviating stress among nursing assistants. Gerontologist, 32, 351–9. Cole, R.P., Scott, S. & Skelton-Robinson, M. (2000) The effect of challenging behaviour, and staff support, on the psychological well-being of staff working with older adults. Aging and Mental Health, 4(4), 359–65. Commission for Health Improvement (2003) Investigation into Matters Arising from Care on Rowan Ward, Manchester Mental Health and Social Care Trust. CHI, London. Day, K., Carreon, D. & Stump, C. (2000) The therapeutic design of environments for people with dementia: a review of the empirical research. Gerontologist, 40, 397–416. Dean, R., Briggs, K. & Lindesay, J. (1993) The domus philosophy: a prospective evaluation of two residential units for the elderly mentally ill. International Journal of Geriatric Psychiatry, 8, 807–17. Dean, R., Proudfoot, R. & Lindesay, J. (1993) The Quality of Interactions Schedule (QUIS): development, reliability, and use in the evaluation of two domus units. International Journal of Geriatric Psychiatry, 8, 819–26. Dobbs, D., Munn, J., Zimmerman, S. et al. (2005) Characteristics associated with lower activity involvement in long-term care residents with dementia. Gerontologist, 45(Special Issue 1), 81–86. Evans, S., Fear, T., Means, R. & Vallelly, S. (2007) Supporting independence for people with dementia in extra-care housing. Dementia, 6, 144–50. Finnema, E., Droes, R.-M., Ettema, T. et al. (2005) The effect of integrated emotion-oriented care versus usual care on elderly persons with dementia in the nursing home and on nursing assistants: a randomized clinical trial. International Journal of Geriatric Psychiatry, 20, 330–43. Garner, J. & Evans, S. (2000) Institutional Abuse of Older Adults (CR84). Royal College of Psychiatrists, London. Gaugler, J.E. (2005a) Family involvement in residential long-term care: a synthesis and critical review. Aging and Mental Health, 9, 105–18. Gaugler, J.E. (ed.) (2005b) Promoting Family Involvement in Long-term Care Settings. Health Professions Press, Baltimore.

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Gibbs, I. & Sinclair, I. (1992) Residential care for elderly people: the correlates of quality. Ageing and Society, 12, 463–82. Goffman, E. (1961) Asylums: Essays on the Social Situation of Mental Patients and other Inmates. Anchor, New York. Gold, D.T., Sloane, P.D., Mathew, L.J. et al. (1991) Special care units: a typology of care settings for memory-impaired older adults. Gerontologist, 31, 467–75. Hallberg, I.R. & Norberg, A. (1993) Strain among nurses and their emotional reactions during one year of systematic clinical supervision combined with the implementation of individualized care in dementia nursing. Journal of Advanced Nursing, 18, 1860–75. Hallberg, I.R. & Norberg, A. (1995) Nurses’ experiences of strain and their reactions in the care of severely demented patients. International Journal of Geriatric Psychiatry, 10, 757–66. House of Commons Health Committee (2004) Report on Elder Abuse. London: House of Commons. Innes, A. (2002) The social and political context of formal dementia care provision. Ageing and Society, 22, 483–99. Innes, A. & Surr, C. (2001) Measuring the well-being of people with dementia living in formal care settings: the use of Dementia Care Mapping. Aging and Mental Health, 5, 258–68. Jenkins, H. & Allen, C. (1998) The relationship between staff burnout/distress and interactions with residents in two residential homes for older people. International Journal of Geriatric Psychiatry, 13, 466–72. Keen, J. (1989) Interiors: architecture in the lives of people with dementia. International Journal of Geriatric Psychiatry, 4, 255–72. Kitwood, T. (1996) A dialectical framework for dementia, in Handbook of the Clinical Psychology of Ageing (ed. R.T. Woods). Wiley, Chichester, pp. 267–82. Kitwood, T. (1997) Dementia Reconsidered: the Person Comes First. Open University Press, Buckingham. Kitwood, T. & Bredin, K. (1992) A new approach to the evaluation of dementia care. Journal of Advances in Health and Nursing Care, 1, 41–60. Kuhn, D., Edelman, P. & Fulton, B.R. (2005) Daytime sleep and the threat to well-being of persons with dementia. Dementia, 4, 233–47. Kuhn, D., Kasayka, R.E. & Lechner, C. (2002) Behavioral observations and quality of life among persons with dementia in 10 assisted living facilities. American Journal of Alzheimer’s Disease and Other Dementias, 17, 291–8. Kuske, B., Hanns, S., Luck, T. et al. (2007) Nursing home staff training in dementia care: a systematic review of evaluated programs. International Psychogeriatrics, 19, 818–41. Lawton, M.P. (1994) Quality of care in residential accomodation in the USA, in Principles and Practice of Geriatric Psychiatry (eds J.R.M. Copeland, M.T. Abou-Saleh & D.G. Blazer). Chichester, John Wiley, pp. 975–9. Lindesay, J., Briggs, K., Lawes, M. et al. (1991) The domus philosophy: a comparative evaluation of a new approach to residential care for the demented elderly. International Journal of Geriatric Psychiatry, 6, 727–36. Lintern, T., Woods, B. & Phair, L. (2000a) Before and after training: a case study of intervention. Journal of Dementia Care, 8(1), 15–17. Lintern, T., Woods, B. & Phair, L. (2000b) Training is not enough to change care practice. Journal of Dementia Care, 8(2), 15–17. Livingston, G., Johnston, K., Katona, C. et al. (2005) Systematic review of psychological approaches to the management of neuropsychiatric symptoms of dementia. American Journal of Psychiatry, 162(11), 1996–2021. Macdonald, A., Carpenter, G.I., Box, O. et al. (2002) Dementia and use of psychotropic medication in non-‘Elderly Mentally Infirm’ nursing homes in South East England. Age and Ageing, 31, 58–64. Mackenzie, C.S. & Peragine, G. (2003) Measuring and enhancing self-efficacy among professional caregivers of individuals with dementia. American Journal of Alzheimer’s Disease and Other Dementias, 18, 291–9. Macpherson, R., Eastley, R.J., Richards, H. & Mian, I.H. (1994) Psychological distress among workers caring for the elderly. International Journal of Geriatric Psychiatry, 9, 381–6. Malmberg, B. & Zarit, S.H. (1993) Group homes for people with dementia: a Swedish example. Gerontologist, 33, 682–6.

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Mann, A.H., Schneider, J., Mozley, C.G. et al. (2000) Depression and the response of residential homes to physical health needs. International Journal of Geriatric Psychiatry, 15, 1105–12. Moniz-Cook, E., Millington, D. & Silver, M. (1997) Residential care for older people: job satisfaction and psychological health in care staff. Health & Social Care in the Community, 5, 124–33. Moniz-Cook, E., Woods, R. & Gardiner, E. (2000) Staff factors associated with perception of behaviour as ‘challenging’ in residential and nursing homes. Aging and Mental Health, 4(1), 48–55. Moos, R.H. & Schaefer, J.A. (1987) Evaluating health care work settings: a holistic conceptual framework. Psychology and Health, 1, 97–122. Mountain, G. & Bowie, P. (1992) The possessions owned by long-stay psychogeriatric patients. International Journal of Geriatric Psychiatry, 7, 285–90. Mozley, C., Sutcliffe, C., Bagley, H. et al. (2004) Towards Quality Care: Outcomes for Older People in Care Homes. Aldershot, Ashgate. Nolan, M., Grant, G. & Nolan, J. (1995) Busy doing nothing: activity and interaction levels amongst differing populations of elderly patients. Journal of Advanced Nursing, 22, 528–38. Oldman, C. & Quilgars, D. (1999) The last resort? Revisiting ideas about older people’s living arrangements. Ageing and Society, 19, 363–84. Parker, C., Barnes, S., McKee, K. et al. (2004) Quality of life and building design in residential and nursing homes for older people. Ageing and Society, 24, 941–62. Parmelee, P.A. & Lawton, M.P. (1990) The design of special environments for the aged, in Handbook of the Psychology of Aging, 3rd edn (eds J.E. Birren & K.W. Schaie). Academic Press, San Diego, pp. 464–88. Peace, S., Kellaher, L. & Willcocks, D. (1997) Re-evaluating Residential Care. Open University Press, Buckingham. Reilly, S., Abendstern, M., Hughes, J. et al. (2006) Quality in long-term care homes for people with dementia: an assessment of specialist provision. Ageing and Society, 26, 649–68. Ritchie, K., Colvez, A., Ankri, J. et al. (1992) The evaluation of long-term care for the dementing elderly: a comparative study of hospital and collective non-medical care in France. International Journal of Geriatric Psychiatry, 7, 549–57. Robertson, A., Gilloran, A., McGlew, T. et al. (1995) Nurses’ job satisfaction and the quality of care received by patients in psychogeriatric wards. International Journal of Geriatric Psychiatry, 10, 575–84. Schnelle, J.F., Newman, D., White, M. et al. (1993) Maintaining continence in nursing home residents through the application of industrial quality control. Gerontologist, 33, 114–21. Skea, D. & Lindesay, J. (1996) An evaluation of two models of long-term residential care for elderly people with dementia. International Journal of Geriatric Psychiatry, 11, 233–41. Sloane, P.D., Lindeman, D.A., Phillips, C. et al. (1995) Evaluating Alzheimer’s special care units: reviewing the evidence and identifying potential sources of bias. Gerontologist, 35, 103–11. Spector, A. & Orrell, M. (2006) Quality of Life (QoL) in dementia: a comparison of the perceptions of people with dementia and care staff in residential homes. Alzheimer Disease and Associated Disorders, 20, 160–65. Stirling, E. (1996) Social role valorization: making a difference to the lives of older people? In Handbook of the Clinical Psychology of Ageing (ed. R.T. Woods). Chichester, John Wiley & Sons, pp. 389–422. Stirling, E. (2004) Making a difference to the lives of older people. International Journal of Disability Communication & Rehabilitation, 3(1). Teresi, J.A., Holmes, D. & Ory, M.G. (2000) The therapeutic design of environments for people with dementia: further reflections and recent findings from the National Institute on Aging collaborative studies of dementia special care units. Gerontologist, 40, 417–21. Teri, L., Huda, P., Gibbons, L. et al. (2005) STAR: a dementia-specific training program for staff in assisted living residences. Gerontologist, 45, 686–93. Tobin, S.S. & Lieberman, M.A. (1976) Last Home for the Aged. Jossey-Bass, San Francisco. Todd, S.J. & Watts, S.C. (2005) Staff responses to challenging behaviour shown by people with dementia: an application of an attributional-emotional model of helping behaviour. Aging and Mental Health,9, 71–81. Townsend, P. (1962) The Last Refuge. Routledge & Kegan Paul, London.

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Wimo, A., Wallin, J.O., Lundgren, K. et al. (1991) Group living, an alternative for dementia patients: a cost analysis. International Journal of Geriatric Psychiatry, 6, 21–9. Woods, B., Keady, J. & Seddon, D. (2007) Involving Families in Care Homes: A Relationship-centred Approach to Dementia Care. Jessica Kingsley, London. Woods, R.T. (1996) Institutional care, in Handbook of the Clinical Psychology of Ageing (ed. R. T. Woods). John Wiley & Sons, Chichester, pp. 369–87. Woods, R.T. (1997) Why should family caregivers feel guilty? In State of the Art in Dementia Care (ed. M. Marshall). Centre for Policy on Ageing, London, pp. 39–44. Woods, R.T. (1999) Institutional care, in Psychological Problems of Ageing (ed. R.T. Woods). John Wiley & Sons, Chichester, pp. 195–217. Woods, R.T. & Macmillan, M. (1994) Home at last? Impact of local ‘homely’ care on relatives of people with dementia, in Community Care: New Agendas and Challenges from the UK and Overseas, (eds D. Challis, B. Davies & K. Traske). Ashgate, Aldershot, pp. 75–85. Wright, L.K. (1988) A reconceptualization of the ‘negative staff attitudes and poor care in nursing homes’ assumption. Gerontologist, 28, 813–20. Zarit, S.H. & Whitlatch, C.J. (1993) The effects of placement in nursing homes on family caregivers: short and long term consequences. Irish Journal of Psychology, 14, 25–37. Zeisel, J., Silverstein, N.M., Hyde, J. et al. (2003) Environmental correlates to behavioural health outcomes in Alzheimer’s special care units. Gerontologist, 43, 697–711. Zimmerman, S., Gruber-Baldini, A.L., Sloane, P.D. et al. (2003) Assisted living and nursing homes: apples and oranges? Gerontologist, 43, 107–17. Zimmerman, S., Sloane, P.D., Williams, C.S. et al. (2005a) Dementia care and quality of life in assisted living and nursing homes. Gerontologist, 45(special issue 1), 133–46. Zimmerman, S., Williams, C.S., Reed, P.S. et al. (2005b) Attitudes, stress, and satisfaction of staff who care for residents with dementia. Gerontologist, 45(special issue 1), 96–105.

18

Elder abuse and neglect Alice Campbell Reay University of Glasgow, Glasgow, UK

and Kevin D. Browne University of Liverpool, Liverpool, UK

INTRODUCTION The issue of elder abuse is now acknowledged as a social and public health problem in need of remediation. Indeed, the topic has been the focus of a recent review in the Lancet (Lachs & Pillemer, 2004) and a chapter in the World Health Organisation World Report on Violence in Health (Krug et al., 2002). Both these reports highlighted the fact that elder abuse and neglect are now the concern of many nations. In the last decade, surveys have been carried out in at least eight countries (US, Canada, Australia, Finland, Holland, Sweden, Denmark and the UK), with rates of abuse between 2% and 10% of older people (Thomas, 2002). These publications followed the establishment of an international network for the prevention of elder abuse in 1997. However, the feasibility of international comparisons is limited by the varying definitions of harmful practices towards elderly people and how they are recorded.

DEFINITIONS AND TYPES OF ABUSE Practitioners are often unsure when abuse is occurring, how to intervene and when therapeutic outcomes are successful. Lachs and Pillemer (2004) claim there is now general agreement that elder abuse and neglect covers the following types of harm: 1. Physical abuse – such as hitting, slapping. pushing, kicking, burning, locking an older person in a room, inappropriate use of medication and restraint and other physical acts with the intention of causing physical pain or injury. 2. Sexual abuse – such as involving the elder person in sexual activities that they do not want or truly comprehend and to which they are unable to give informed consent, including rape, sexual assault and pornography. Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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Table 18.1 Comparison of prevalence rates by country found in random sample population studies of elder people Rate (%) Types of abuse

USA

Canada

All types Physical Verbal Neglect Financial

3.2 2.0 1.1 0.4

4.0 0.5 1.4 0.4 2.5

UK

Scandinavia*

Australia

7–8 2.0 5.0 2.0

Holland 5.8

2.1 2.5 1.4 1.1

Source: USA – Pillemer and Finkelhor (1988); Canada – Podnieks and Pillemer (1989), Podnieks, (1992); UK – Ogg and Bennett (1992); Australia – Kurle, Sadler and Cameron (1992); Holland – Comijs et al. (1999); *Finland – Kivelia et al. (1992); *Sweden and Denmark – Tornstam (1989).

3. Psychological abuse – for example, threats of harm or abandonment, intimidation, humiliation, deprivation of contact, isolation, denial of basic rights and other acts with the intention of causing emotional pain or injury. 4. Neglect – acts of omission and the failure of a carer to meet the needs of their elderly dependent, for example withholding medication and appropriate health and social care, refusing to provide meals or drinks, refusing material or emotional support, physical and emotional neglect. 5. Financial or material exploitation – for example, theft, fraud, misuse of money, possessions or property belonging to the older person, coercion into financial transactions or amending legal documents and wills. The UK government (Department of Health, 2000) also include discriminatory abuse in its guidelines, where the elderly person is discriminated against, abused or neglected on the basis of race, age, gender or disability. Although not the focus of this chapter, it should also be recognized that elderly people are abused in other environments outside the home setting including hospitals, nursing homes and sheltered housing. Indeed, the World Health Organization (Krug et al., 2002) includes elder abuse by systems and within institutions and the marginalization of elderly people by governments. In the USA, Johnson (1986) offers a broader and all-encompassing perspective: ‘Elder mistreatment is conceptualised as self- or other-inflicted suffering unnecessary to the maintenance of the quality of life of the older person.’ Hallett (1995) suggests that ‘ideas of what constitutes abuse change over time and vary from place to place, reflecting differing national problems and professional and societal preoccupations’; for example, traditional and harmful practices that include a lack of support and respect for elderly people, accusations of eccentricity, witchcraft and so forth.

PREVALENCE AND RISK FACTORS There are seven prevalence studies available from differing countries (see Table 18.1). The small variation in prevalence rates is a result of varying methodologies. The research base

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from which an understanding of risk factors has been built has been rather misleading inasmuch as the early US research failed to reach the gold standard of empiricism. The early studies were methodologically flawed, with small unrepresentative populations, nonvalidated and unreliable measures and an absence of control groups. The six studies that did use control groups provide some consensus on risk factors (Anetzberger, Korbin & Austin, 1994; Bristowe & Collins, 1989; Browne & Herbert,1997; Campbell-Reay & Browne, 2001; Grafstrom, Nordberg & Winblad, 1992; Homer & Gilleard, 1990; Phillips, 1983; Pillemer, 1986). A synthesis of the above studies identifies five factors that appear with varying degrees of evidence:

r intraindividual dynamics (psychopathology of the abuser); r intergenerational transmission of violence; r dependency and exchange relationships; r external stress; r social isolation. Dependency The stereotypical view of a victim of elder abuse is an impaired and dependent person over 70 living constantly with an inexperienced or unwilling caregiver who has high expectations of the elderly relative (Campbell-Reay & Browne, 2001), although problems associated with disability and dependency may occur earlier in the relationship (see Chapter 16, this volume, for a fuller discussion of caregiving issues). This view is supported by evidence from case control studies, which demonstrated that abuse victims are more impaired than their nonabused control group counterparts (Pillemer, 1986). It also appears that abusers are more dependent than nonabusive carers on the elderly dependent for accommodation and financial support.

Intra-individual Dynamics There is substantive evidence of mental health problems for abusive or neglectful carers, in terms of a history of depression, anxiety, alcohol and drug misuse (Anetzberger, Korbin & Austin, 1994; Bristowe & Collins, 1989; Campbell-Reay & Browne, 2001; Homer & Gilleard, 1990; and Pillemer, 1986). However, Anetzberger and colleagues question the aetiology of mental health and alcohol problems. For example, does alcohol remove inhibitions, which leads to abuse, or do individuals with tendencies towards alcoholism turn to alcohol because of the stress of caring?

Stress Stress as a risk factor has been historically associated with elder abuse and neglect since Eastman (1984) reported that 80% of Social Services staff believed stress to be the cause of the problem. However, from the six case controlled studies available, only Grafstrom, Nordberg and Winblad’s (1992) research supported the view that the ‘abusive group were

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suffering higher levels of stress than their control counterparts’. Indeed, the high levels of strain reported for abusing and neglectful caregivers (Campbell Reay & Browne, 2001) may also be found in nonmaltreating caregivers. Biggs, Kingston and Phillipson (1995) argue that stress and alcohol misuse does not cause or condone abuse although these factors may be associated with reciprocal violence of longstanding duration. Nevertheless, poor physical health of the carer, unemployment, poor housing and other caring demands from the caregiver’s spouse and children are likely to increase the probability of elder abuse and neglect (Campbell Reay & Browne, 2001).

Social Isolation Social isolation has been observed in 88% of abusive and 70% of neglectful carers (Campbell Reay & Browne, 2001). However, the evidence citing social isolation of perpetrators as a risk factor is mixed, with two other studies supporting the hypothesis (Grafstrom, Nordberg & Winblad, 1992; Pillemer, 1986) and two claiming it is not a factor (Homer & Gilleard, 1990; Phillips, 1983). Clearly, more research is required. From a victim perspective, elderly people who live alone are at the lowest risk (Pillemer & Finkelhor, 1988).

Intergenerational Transmission of Violence This risk factor is derived from the concept of ‘victim to offender’, often quoted in research on child maltreatment and domestic violence, where there is a higher probability of becoming an abusive and/or neglectful adult after having been maltreated as a child. Of course, in terms of the elder maltreatment the concept is reversed and exists as ‘offender to victim’, where the older relative may have perpetrated violence in the past on their adult carer as a child and/or teenager and now the older relative is the recipient of violent behaviour. Indeed, Browne and Hamilton (1998) have found that physical violence between young adults and their parents to be highly associated with a history of previous child maltreatment in the family. However, the evidence to support these phenomena is tentative due to the retrospective nature of the research and the difficulty of prospective studies over a generation. Nevertheless, there is evidence to suggest that perpetrators of elder maltreatment had insecure attachments to their parents in the past, which significantly affects their investment in caring for their elderly dependent in the present (Browne & Herbert, 1997). Hence, attachment disorders may be a mechanism for intergenerational transmission of violence, with history of long-standing abusive relationships that continue into later life (Grafstrom, Nordberg & Winblad, 1992; Homer & Gilleard, 1990). The reversal of power and violence between parent and child over a generation should not be confused with spouse abuse between older partners. This ‘intimate partner violence’ develops over time where the perpetrator and victim in the relationship remain the same for many years (Biggs, Kingston & Phillipson, 1995). Indeed, the later phenomena should be correctly referred to as spouse abuse or graduated domestic violence among older people, which represents longstanding partner violence that has continued into later life.

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Risk Factors and Type of Maltreatment A separate examination of risk factors associated with physical abusers compared to those associated with neglectful carers indicates different risk profiles (Campbell Reay & Browne, 2001). The research suggests that heavy alcohol consumption, depression, conflict and past childhood abuse by fathers is likely to lead to physical abuse, whereas anxiety is more likely to lead to neglect. It should be pointed out however, that often physical abuse and neglect occur concurrently because of a combination of risk factors.

PREVENTION AND INTERVENTION In order to consider more fully a useful approach to both prevention and treatment it is necessary to consider a three-stage strategy: prevention, intervention and maintenance of support.

Primary Stage: Prevention In view of the relatively low level of awareness of elder abuse amongst health and social workers, preventative measures are at an early stage of development, if present at all. When elderly people come into contact with health and Social Service professionals, this represents an opportunity to screen for the risk of elderly maltreatment as well as dealing with the needs of the elderly individual and their family. If risk factors are identified or evidence of elderly maltreatment is detected then this needs to be brought to the attention of Social Services who have a statutory responsibility to investigate and support families where elder abuse and or neglect is suspected (Department of Health, 2000). The risk associated with either present or future violence to the elderly person needs to be assessed. In addition, recognizing high-risk factors at the time of screening, primary healthcare teams need to be informed and involved in a care plan to avoid the possibility of abuse or inadequate care occurring in the future. Where there is evidence of progressive disease or increasing disability in the client, it is highly desirable that family members will take an active role in planning for future care in partnership with health and social care professionals. However, many families are unaware of the long and difficult task that a commitment to care entails and decisions about the caring relationship are often made in the absence of any counselling. Zdorkowski and Galbraith (1985) suggest that prevention needs to focus on the rights, safety and health of elderly people and the reformulation of ageist attitudes in our society with adequate support for carers. Furthermore, it would be beneficial to enhance existing services and provide state funded nursing, day and respite care for elderly people. This will give the carers well-needed and frequent breaks from their undervalued role. This needs to be considered in terms of seven-day services, overnight sitting services, confidential helplines and advocacy.

Secondary Stage: Intervention Having considered the problems outlined above in detecting and identifying abuse, any intervention strategies need to begin with a comprehensive assessment procedure. This

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should be tailored to the individual client’s needs and should avoid stereotyping the older person (Stevenson, 1989). Engaging the client who is involved in the abusive situation may require more care and time than usual, as ‘victims are often reluctant to discuss the problem . . . or the abuser may restrict access by being there, taking all calls, letters etc.’ (Breckman & Adelman, 1988). However, persistence is required in view of the potentially serious nature of the abusive relationship. The assessment may vary depending on the clinician involved, but should encompass the following areas:

r An account of the abusive behaviour itself – form, duration, frequency, intensity, antecedents, consequences and maintaining factors.

r An account of the victim’s behavioural coping strategies – what helps and what does not help.

r The thoughts, attitudes and beliefs surrounding the abuse – intent of the abuser, reasons r r r r

attributed by the victim for the abuse, meaning attached to the abuse, cognitive coping strategies for dealing with the abuse. An account of psychological problems and psychological history of both abuser and victim and assessment of cognitive and behavioural functioning. Details about the relationship between the abused and the abuser – history, changes, strengths, weaknesses, dependency, individual roles within the relationship, and the power balance. The rules under which the family functions and what the communication systems are within the family. Social context – environmental strains, living arrangements, financial situation, and other family members and friends.

A multidisciplinary approach should always be adopted, as medical, social and psychological assessments are required before further action can be decided (Levin, 1989). In the US, specialist multidisciplinary assessment teams have been set up to assess cases of elder maltreatment. During this procedure the needs and wishes of the family, the carer and the victim are established before further action can be decided upon. This is best achieved by means of a case conference where the victim, relatives and members of the family are invited to attend and where the coordination of services can be agreed and reviewed at regular intervals. Any intervention should be tailored to the individual family’s needs and be based on the outcome of the assessment procedure. The aim of the intervention is to facilitate and maintain change; this may take the form of providing extra resources for the family or of increasing social contact for the client, and may be focused on the whole family, the victim alone or the abuser alone. Three specific models of treatment will be outlined here: Breckman’s staircase model, the family therapy approach, and anger management with education. In the first model, Breckman (1983) focuses on the victim and argues that victims go through three specific stages towards healing and change, reluctance, recognition and rebuilding:

r The reluctance stage represents the bottom of the staircase. During this period victims have not yet framed the problem as one of mistreatment. They are likely to blame themselves for the problem, isolate themselves and be unwilling to talk about making changes.

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Rather than ask for help for themselves, they are more likely to ask for help for the abuser. Intervention involves breaking through the self-denial, decreasing feelings of isolation and guilt, destigmatizing the problem (giving ‘permission’ to discuss it), beginning to discuss and open up the options for change and keeping close links with the therapist. r During the recognition stage there is a lessening of self-blame and denial. Victims begin to recognize the problem as serious and complex and are more receptive to talking about the mistreatment. They are more willing to come for counselling, join support groups or talk for extended periods on the phone. Intervention at this stage is a continuation of the previous stage’s work, only with greater participation from the client. Decreasing feelings of isolation, decreasing feelings of guilt, opening up options and problem-solving are all part of the intervention strategy at this stage. r The third stage is the rebuilding stage, and it is at the top of the staircase. Here, victims begin to reshape their identity, no longer believe that abuse must be tolerated in order to prove devotion to the abusing relative, they actively begin to seek lifestyle alternatives, and consider a life without abuse. Intervention at this stage is, as before, a continuation of the previous stage This model provides a useful framework for intervention and for facilitating changes for the better. However, it relies strongly on the assumption that changes for the better involve some form of separation from the abuser. This may not necessarily be in the best interests of the older person or the easiest solution and it is arguably bad practice to begin therapy with separation as the specific aim. This may reinforce the carer’s violence as he/she may want separation. Providing the victim with opportunities for change within the relationship, as well as the opportunity to change by separation, is arguably more helpful. The second model is a family-oriented approach to treatment that focuses on both victim and offender, as detailed by Edinberg (1986). In contrast to the staircase model, this approach strives to keep the relationship together. This model of intervention is based on a systems approach to families. As such, it holds the following assumptions:

r The total family system is more than the sum of its parts. r To understand the individual one must also understand the total system and its relationships.

r Relationships and behaviour are interactive- all events are part of a sequence. r To change individual behaviour, the patterns, relationships and communication styles of the family system must be changed. The goals of therapy include working towards strengthening the family’s functioning, not just the individual’s position. Thus the family becomes the focus for assessment and intervention, not the individual. The family-oriented approach is attractive for work with elder abuse for two reasons: first, the elderly person is not viewed as the problem, but rather is viewed within the context of the family. Secondly, the problem of abuse generally is a problem of poor interactions and relationships and is treated as such by family therapy. Edinberg (1986) puts forward the main reason why this family approach to treatment is rarely used with elderly people. Mental health therapy is largely founded on an individualistic orientation, with treatment of the individual as the goal of therapy.

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Maltreatment Continuum Active abuse <-----------------------------------------------------------------> Passive neglect Sexual - Physical - Verbal - Financial - Psychological - Inadequate Care - Neglect

Family Therapy

Police

Anger Management

Cognitive Therapy

Marital Therapy

Improving services Support-Carers' respite. Education Empowerment Advocacy

Counselling

Social Services Supervision

Bankers Legal recourse

<------------------------------- Intervention Continuum -----------------------------------> Figure 18.1 Multidisciplinary service provision and interventions

The third model is anger management with education, focusing on the offender. The ability to regulate and manage anger has important implications for wellbeing. The research into anger management control has been applied to perpetrators of physical abuse of elderly people (Campbell Reay & Browne, 2002), based on work by Novaco (1975), using a format of individual sessions and a treatment plan which includes:

r Self-report monitoring by means of diary keeping. r Educational content – understanding reasons for anger. r Teaching self-statements for use in anticipation of, during and after anger situations. r Teaching the use of relaxation in coping with physical tension. r Dealing with the anger behaviour – for example, assertion skills, time out, etc. Many relatives claim that their elderly dependants ‘deliberately’ provoke them (Eastman, 1989); thus this model of intervention is useful in challenging these assumptions while providing a straightforward and accessible technique for anger management. An evaluation of the effectiveness of the anger management and education model, by pre- and postintervention measures and six month follow up, was carried out by Campbell Reay and Browne (2002) with nine physically abusing carers and 10 neglectful carers. Both physical abuse and neglect groups showed significant reductions in strain, depression and anxiety as a result of the education component. Further reductions in these areas were achieved from the anger management intervention, which also lowered the cost of care for both groups and aggressive conflict tactics for the physical abuse group. All reductions observed were maintained at the six-month follow-up, indicating that this model of intervention is effective. Interventions are more likely to be successful if they address the needs of all the family; the elderly victim, the offender(s) and the nonmaltreating members of the household. It is suggested that interventions should identify, assess and stop all abusive (active and intentional) acts as well as identifying neglectful (passive and sometimes unintentional) acts with a view to encouraging behavioural change and commitment to care. A range of possible service options that may be available to families on referral are given in Figure 18.1. A multidisciplinary approach to case management and supervision is necessary

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in order to make available this range of services. For example, following a comprehensive assessment of neglect, interventions should take the form of improving services, providing support, counselling and educating the carer. In cases of physical and verbal abuse, anger management, family/marital therapy and individual cognitive therapy is necessary. Often both abuse and neglect co-occur as general maltreatment, where a complete range of interventions may be necessary including negotiations with bankers and solicitors over financial mismanagement of the elderly person’s assets. All professionals working with families who maltreat their elderly relatives and/or dependants require good professional supervision and support.

Tertiary Stage: Case Management and Maintenance of Support for Elder Abuse and Neglect The good management of suspected cases involving elder abuse and neglect is essential to the welfare of the older person and his/her family. Usually, the professional is involved in a number of decisions in order to construct a care plan for the older person dependent, preferably in partnership with family members, relatives and friends. The care plan should uphold the rights of the elderly individual and be in the best interests of his/her future welfare and quality of life. Usually, it is possible for the older person to be actively involved and express his/her views on their future health and social care. Where the elderly person cannot contribute due to mental incapacity then s/he should be legally represented by an independent professional from Health or Social Services who can consider his/her best interests. Some of the decisions that require careful consideration are diagrammatically represented as a flowchart in Figure 18.2. In order to maintain any reduction in the level of abuse achieved it is necessary to continue a programme of support, community care and continuing education. In this way, any further problems can be identified and dealt with at the primary care level.

CONCLUSION It is clear that elder abuse and neglect is the most recent discovery in the family violence arena, with the US and the UK discovering elder abuse and neglect in the early 1980s and the UK legitimating elder maltreatment as a problem of social concern in the early 1990s. However, differences in responses are noted between the US and the UK. In the absence of effective state-funded health and social services for elderly people, the US response followed a criminalistic route, using reporting laws, the majority of which are mandatory, with the professional response being developed by the Adult Protective Services Departments. By contrast, the UK has opted to rely on an existing health and social welfare response, as seen in the NHS and Community Care Act of 1989 and the ‘No Secrets’ guidelines (Department of Health, 2000). It is premature to speculate on the relative merits of the different responses. However, the task for health and social welfare professionals is to develop innovative responses tailored to local needs, with empowerment of, and advocacy for, elderly victims given paramount importance. Psychologists are clearly in an ideal position to use their previous prevention and treatment work with victims of child maltreatment and domestic violence in the area of elder abuse and neglect.

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Referral to Social Services

Presentation of abusive situation Is neglect occurring?

Is victim safe

Yes

Yes

No Continue to monitor family

Education, Counselling, Social services supervision.

Is violence occurring? No Yes Is victim safe?

? Removal ? Police ? Legal recourse

No Yes

Can victim openly acknowledge abuse?

Individual counselling

No

Yes Can carer acknowledge abuse?

No

? Counselling ? Services Case conference Care plan

Yes Does victim wish to remain with carer?

No

Yes

Family therapy Marital therapy

Yes

Are both carer and relative willing to discuss problem together? No Carer support Individual therapy ? Alcohol therapy ? Anger & stress management

Figure 18.2 Flowchart for physical abuse and neglect

Look for alternatives

? Information ? Services ? Resources

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REFERENCES Anetzberger, G., Korbin, J.E. & Austin, C. (1994) Alcoholism and elder abuse. Journal of Interpersonal Violence, 9(2), 184–93. Biggs, S., Kingston, P.A. & Phillipson, C. (1995) Elder Abuse Perspectives. Open University Press, Buckingham. Breckman, L.S. (1983) Staircase model: a tool for assessment and case-management planning with competent victims of elder mistreatment, in Strategies for Helping Victims of Elder Mistreatment (eds L.S. Breckman & R. Adelman). Sage, London. Breckman, L.S. & Adelman, R.D. (1988) Strategies for Helping Victims of Elder Mistreatment. Sage, London. Bristowe, E. & Collins, J. (1989) Family mediated abuse of non-institutionalised frail elderly men and women in British Colombia. Journal of Elder Abuse and Neglect, 1, 45– 64. Browne, K.D. & Hamilton, C.E. (1998) Physical violence between young adults and their parents: associations with a history of childhood maltreatment. Journal of Family Violence. 13, 59–79. Browne, K.D. & Herbert, M. (1997) Preventing Family Violence. John Wiley & Sons, Chichester. Campbell Reay, A.M. & Browne, K.D. (2001) Risk factor characteristics in carers who physically abuse and neglect their elderly dependents. Aging and Mental Health, 5(1), 56–62. Campbell Reay, A.M. & Browne, K.D. ( 2002) The effectiveness of psychological interventions with individuals who physically abuse or neglect their elderly dependents. Journal of Interpersonal Violence, 17(4), 416–31. Comijs, H.C., Penninx, B.W., Knipscheer, K.P., & Van Tilberg, W. (1999) Psychological distress in victims of elder abuse. Journal of Gerontological Psychology and Social Science, 54, 40–245. Department of Health (2000) No Secrets: Guidance on Developing and Implementing Multi-agency Policies and Procedures to Protect Vulnerable Adults from Abuse. HMSO, London. Eastman, M. (1984) Old Age Abuse. Age Concern, Mitcham. Eastman, M. (1989) Studying old age abuse, in Human Aggression: Naturalistic Approaches. (eds J. Archer & K. Browne). Routledge, London. Edinberg, B. (1986) Developing and integrating family orientated approaches in care of the elderly, in Elder Abuse: Conflict in the Family (eds K. Pillemer & R.S. Wolf). Auburn House, Dover MA. Grafstrom, M., Nordberg, A. & Winblad, B. (1992) Abuse is in the eye of the beholder. Scandinavian Journal of Social Medicine, 21(4), 247–55. Hallett, C. (1995) Child abuse: an academic overview, in Family Violence and the Caring Professions (eds P.A. Kingston & B. Penhale). Macmillan, Basingstoke. Homer, A. & Gilleard, C. (1990) Abuse of elderly people by their carers. British Medical Journal, 301, 1359–62. Johnson, T.F. (1986) Critical issues in the definition of elder mistreatment, in Elder Abuse: Conflict in the Family (eds K.A. Pillemer & R.S. Wolf). Auburn House, Dover MA. Kivella, S.L., Kongas-Saviaro, P., Kesti, E. et al. (1992) Abuse in old age-epidemiological data from Finland. Journal of Elder Abuse and Neglect, 4(3), 1–18. Krug, E.G., Dahlberg, L., Mercy, J.A. et al. (2002) World Report in Violence and Health. WHO, Geneva, pp. 123–46. Kurle, S.E., Sadler, P.M. & Cameron, J.D. (1992) Patterns of elder abuse. The Medical Journal of Australia, 157, 673–6. Lachs, M.S. & Pillemer, K. (2004) Elder abuse. The Lancet, 364, 1263–1272. Levin, E. (1989) The supporters of confused elderly people: problems, strains and services. Paper presented at British Geriatrics Society Conference, London. In Abuse of elderly people: an unnecessary and preventable problem (ed S. Tomlin). British Geriatrics Society, London. Novaco, R. (1975) Treatment of chronic anger through cognitive and relaxation controls. Journal of Consulting and Clinical Therapy, 44, 681. Ogg, J. & Bennett, G. (1992) Elder abuse in Britain. British Medical Journal, 305, 998–9. Phillips, L.R. (1983) Abuse and neglect of the frail elderly at home: an exploration of theoretical relationships. Journal of Advanced Nursing, 8, 379–92. Pillemer, K. (1986) Risk factors in elder abuse: results from a case-control study, in Elder Abuse: Conflict in the Family (eds K. Pillemer & R.S. Wolf, Auburn House, Dover, MA.

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Pillemer, K.A. & Finkelhor, D. (1988) The prevalence of elder abuse: a random sample survey. The Gerontologist, 28(1), 51–7. Podnieks, E. & Pillemer, K.A. (1989) Survey on Abuse of the Elderly in Canada. Ryerson Polytechnical Institute, Toronto. Podnieks, E (1992) National Survey of Abuse on the Elderly in Canada. Journal of Elder Abuse and Neglect, 4, 5–58. Stevenson, O. (1989) Age and Vulnerability. Edward Arnold, London. Thomas, C. (2002) First National Study: contrasts with results from other studies. Journal of Elder Abuse and Neglect, 12, 1–14. Tornstam, L. (1989) Abuse of the elderly in Denmark and Sweden: results from a population study. Journal of Elder Abuse and Neglect. 1, 35–44. Zdorkowski, R.T. & Galbraith, M.W. (1985) An inductive approach to the investigation of elder abuse. Ageing and Society, 5(4), 413–429.

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Primary care psychology and older people Gita E. Bhutani Lancashire Care NHS Trust, Preston, UK

INTRODUCTION Taking the World Health Organisation (WHO) definition of primary healthcare as its starting point, this chapter provides international examples to illustrate the varied development of primary healthcare services and the delivery of mental health and psychological therapies. Factors affecting older people’s receipt of psychological therapies are also described in relation to issues of recognition and referral. Finally, three models of psychology provision in primary care and the implications for the roles of clinical psychologists are discussed.

WHAT IS PRIMARY CARE? Primary care services are the first point of contact with healthcare for the vast majority of the world population. There are many forms of primary care throughout the world, however, it was only in 1978 that the WHO defined primary healthcare as ‘essential healthcare based on practical, scientifically sound and socially acceptable methods and technology, made universally available to individuals and families in the community through their full participation and at a cost that the community and country can afford to maintain through every stage of their development in the spirit of self-reliance and self-determination’ in the Alma-Ata declaration (World Health Organisation, 1978). With an emphasis on holistic care that included the promotion of health, education, and integration with community developments such as housing, primary healthcare could be seen as a ‘strategy to integrate all aspects of health services’ (Vuori, 1984).

HOW ARE HEALTH CARE SERVICES DELIVERED IN PRIMARY CARE? The development of primary care services has focused to a large extent on the provision of general practitioner (GP) services and community-based treatments rather than the more Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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holistic proposals of the WHO. In 1998, WHO noted that while there had been improvement in many areas, there were continued inequities with a narrow focus on treatment or specific physical health problems rather than on prevention and community involvement (World Health Organisation, 1999). In the US, funding for healthcare comes from private insurance or federal funding (Medicare and Medicaid) for older people and the disadvantaged. Primary healthcare has largely been provided by health maintenance organizations or groups of single function providers but these are not universally accessible. Between 30 and 40 million Americans do not have health insurance and 65 million are underinsured, which severely limits their access to healthcare (Shortell & Kaluzny, 1997). In other developed countries such as Canada, Australia and much of Western Europe, the model of the GP and some community-based services funded by the government has been prevalent (Johri, Beland & Bergman, 2003; Starfield, 1991; World Health Organisation, 2004a). In Europe, since the early 1980s, there has been an increase in the amount and range of healthcare provided at primary care level but this has largely focused on physical health (World Health Organisation, 2004a). For countries in the developing world, including large parts of Africa and Asia, primary healthcare has focused on public health programmes such as immunizations and child and maternal welfare, with limited universal access to healthcare in terms of treatment (Araya et al., 2003; World Health Organisation, 2004a). In the UK following the Second World War, the National Health Service (NHS) was created. This resulted in an expansion in the provision of general practice and community health services (largely nursing) (Peckham & Exworthy, 2003). In 1997, the aim of the new Labour government was to bring primary care to the fore with the publication of Our Healthier Nation (Department of Health, 1998) and Saving Lives: Our Healthier Nation (Department of Health, 1999). These Green and White papers focused on five areas for improvement: reduction in rates of cancer, coronary heart disease and stroke, accidents and suicide. Since then, the emphasis has been on developing a primary care led service and providing a wide range of healthcare in the community with a view to increasing access as well as reducing costs. This has led to an increase in the provision of minor surgery clinics and therapies such as physiotherapy and podiatry in primary care (Royal College of General Practitioners, 2003). Mental health services (including clinical psychology) provision in primary care has also increased although there is wide variation in what is provided as well as in how services are provided. With the increasing emphasis on a primary care led NHS in the UK, there are ongoing changes in how healthcare services are commissioned and provided. Primary Care Trusts in England, and their equivalents in Scotland, have been created with responsibilities around commissioning secondary care services, service provision and public health, and the integration of health and social care (Department of Health, 1999). These responsibilities bring them closer to the WHO definition of primary healthcare. In contrast, Wales and Northern Ireland retain a health authority/board structure where commissioning and provider roles remain separate. The development of National Service Frameworks (NSF) in England and Wales and the work on evidence-based treatment by the National Institute for Clinical Excellence (NICE) in England and Wales and Quality Improvement Scotland (QIS) also have an impact on what services should be delivered by primary care. A NSF for Older People was published in 2001 (Department of Health, 2001) but recommendations in the NSFs for mental health, diabetes, coronary heart disease, cancer (not technically an NSF as it predates the

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development of these) and long-term conditions are also relevant. National guidance in the form of technology appraisals on what treatments should be made available or withdrawn has been provided by NICE. These appraisals have provoked controversy as in the withdrawal of certain drug treatments from the NHS prescribing list e.g. beta interferon for multiple sclerosis (National Institute for Clinical Excellence, 2002). The NICE has also issued recommendations on the management and treatment of anxiety and depression and recommended that cognitive behaviour therapy (CBT) be made more widely available (National Institute for Clinical Excellence, 2005a, b). Currently, in the UK, the provision of acetylcholinesterase inhibitors in Alzheimer’s disease has been restricted to those in moderate stages of Alzheimer’s disease (National Institute for Clinical Excellence, 2006) but this has been a controversial decision with legal proceedings pending against NICE at the time of writing. Within the industrialized Western nations, primary care remains the point at which the majority of people access the healthcare system and where 90% of health problems are managed and/or treated (World Health Organisation, 2004a, c). European evidence suggests that primary healthcare based systems provide better population health outcomes, improved equity, access and continuity and lower costs (World Health Organisation, 2004a). In the UK, commissioning both by primary care organizations and clusters of general practices in a locality of a primary care organization (PCO) is still developing particularly in mental health where initiatives such as practice based commissioning and payment by results have still to be fully implemented. The ongoing impact of these developments has yet to be evaluated and it is unclear if the new primary care based organizations are able to deliver better outcomes and value for money.

THE HEALTH NEEDS OF OLDER PEOPLE The increasing number of older people (aged 60 and above) worldwide has been well documented (e.g. World Health Organisation, 2004b). Older people are also more likely to suffer from both acute episodes of illness such as stroke or heart disease as well as chronic long-term conditions such as arthritis, high blood pressure. Dementia is more common in older age groups and its impact is not only on those afflicted but their families; the main carer is often an elderly spouse (Williams, 1995). Consequently, older people are likely to have a much greater need for health and social care services (Department of Health, 2001). In the UK in 2001, the NHS expenditure on older people was £10 billion or 40% of its total budget and social services spending was nearly 50% (£5.2 billion) on older people (Department of Health, 2001). In other industrialized countries, between a third and half of all health spending is on older people (Johri, Beland & Bergman, 2003). Use of medication increases with age with almost half the NHS drugs bill spent on medication for older people (Department of Health, 2001). Of those aged 75 and above, 80% take at least one prescribed medicine with 36% taking four or more medicines (Department of Health, 2001). The amount and range of medication taken by older people may put them at risk for further health problems due to polypharmacy. In addition, the ageing body’s physiological inefficiency can result in the increased toxicity of certain medication (Williams, 1995).

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MENTAL HEALTH SERVICES FOR OLDER PEOPLE Mental health services have always lagged behind physical health services in terms of provision and prioritization. Within mental health services, old age has not been universally viewed as a priority (World Health Organisation, 2004b). Consequently, mental health services for older people are underdeveloped in most of the world. In Europe, a study of six countries (Denmark, France, Germany, Sweden, Switzerland and the UK) found only two (Switzerland and UK) had countrywide mental health services for older people (Bramesfeld, 2003). In the US, access to mental health was limited until changes in insurance cover improved funding in this area (Gray et al., 2005). Despite this, the drive to keep costs down resulted in the increased use of counsellors and nurses and limited access to psychology or psychiatry (Gray et al., 2005). In Australia, psychologists are not included in the federally funded Medicare programme and public access has been limited to a small number of state psychologists (Kear-Colwell, 1998; McGuire, 1999). Recent Australian initiatives have allowed groups of GPs to employ nonmedical mental health specialists including psychologists, social workers and nurses but the impact of this development remains to be seen (Vines et al., 2004; Winefield & Chur-Hansen, 2004). In South Africa, there is limited provision of mental health services (including clinical psychology) in the community with a shortage of suitably trained professionals (Petersen, 2004). In the UK, community-based services developed from the 1980s onwards as mental health services for older people developed. Initially, these services were linked with hospital provision and old age psychiatrists offered interventions to older people with mental health problems. Few psychologists offered services to older people at that time, with only 25 members joining a special interest group in 1980, but more recently estimates by the Department of Health in 2005 have shown approximately 500 psychologists working with older people in the NHS.

PSYCHOLOGICAL THERAPIES IN PRIMARY CARE Access by older people to psychological therapies irrespective of where they are based has been limited in the majority of industrialized nations including the UK, US, Canada, Australia and European nations such as France, Belgium, Holland, Germany and Spain (Del Barrio & Carpintero, 2003; Department of Health, 1996; Derksen, 1986; Finch, 2004; Romanow & Marchildon, 2003). Access to psychological therapies for older people in primary care in the UK as a separate entity is extremely limited (Department of Health, 2001, 2004) and few examples exist.

UK Perspectives To assess what psychological therapies are available in primary care, the literature on younger adults provides a guide. In the UK, primary care psychological therapies services grew throughout the 1980s and early 1990s as a result of changes to the commissioning structures. General practices were able to become fundholders and many directly purchased clinical psychology services for their patients. Economies of scale meant that these services

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were often still managed and provided from mental health trusts. A parallel development at this time was the growth in counselling and counsellors began to offer their services to GP fundholders (Miller, 1994; Sibbald et al., 1993). In terms of the therapeutic services available, the contracting procedure favoured shortterm interventions for mild to moderate problems, recognizing that the more complex and/or severe mental health problems required more intensive approaches provided by the local secondary care mental health service. The therapies offered in primary care were shortterm and problem or solution focused. Cognitive behavioural approaches have been widely offered as have solution-focused or brief-focused therapies. Person-centred counselling approaches in their ‘purest’ form have been discouraged due to the open-ended nature of the therapeutic contract. With the increase in cognitive-behavioural approaches, post-graduate diploma courses have been developed to train qualified mental health practitioners in CBT. A range of professionals now provides psychological therapy services in primary care, a common combination being clinical psychologists, counsellors and cognitive behaviour therapists. Despite the increase in the provision of psychological therapies in primary care, demand has outstripped supply and services have become stretched with long waiting lists. Contracting has emphasized ‘face-to-face’ contacts at the expense of the broad range of potential clinical psychology activity (Baty et al., 2001; Medlik, 1999). Consequently, links with prevention and training strategies have been limited (Department of Health, 2004).

Perspectives from the US Primary care psychology began to emerge as a specialty from the 1990s. The role of a primary care psychologist was seen as that of a generalist providing interventions across the lifespan, and also working with other primary care providers and teams and acting as gatekeepers to more specialist mental health services (Bray, 2004). The suggested focus of the role is on the most common mental health problems in primary care including depression, anxiety, substance abuse and somatization (Philbrick, Connelly & Wofford, 1996). Behavioural interventions in physical health are also suggested as a means of promoting lifestyle change to prevent ill health such as smoking cessation or weight management. In addition, interventions in chronic conditions such as hypertension, heart disease or obesity are also seen as part of the primary care psychologist’s role (Bray, 2004). This role outline could lend itself favourably to work with older people who often present with both mental and physical health needs but the take up rate of primary care psychology by older people is around 8%. The majority of older people are more often seen in hospital settings (Dobmeyer et al., 2003). Current debate in the US on primary care psychology has focused on the training required to perform the role (Bray, 2004; Dobmeyer et al., 2003; Masters et al., 2005; Pisani et al., 2005; Talen, Faser & Cauley, 2005). The key requirements can be summarized as skills and knowledge in general psychology (defined as working with common mental health problems), health psychology and effective interdisciplinary working (Dobmeyer et al., 2003; Schulte et al., 2004; Talen et al., 2005). The requirement for successful interdisciplinary working assumes that the primary care psychologist should be able to offer effective advice and training to other members of the primary care team.

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Evaluation of Psychological Therapies in Primary Care There is evidence of the efficacy of CBT for a range of problems both in adults and older adults that is beyond the scope of this chapter (see Chapter 27, this volume). Within primary care, evaluation and audit approaches have demonstrated that psychological therapies for anxiety and/or depression are effective although long-term evidence is limited (Department of Health, 2003; White, 2000). Clearly, primary care based psychological therapies have proven effectiveness in the under-65 population. Some primary care based psychological therapies services do not operate an age cutoff and are accessible to older people although takeup appears to be low (Claxton & Turner, 1997; Donnison & Burd, 1994). In the UK, services are focused on direct clinical delivery of psychological therapy whereas in the US the approach proposed encompasses a wider range of activities. In both countries, services provided specifically for older people within primary care are often part of existing services and rarely exist as separate entities.

WHAT FACTORS INFLUENCE THE DELIVERY OF PSYCHOLOGICAL THERAPIES TO OLDER PEOPLE? Recognition and Management of Mental Health Problems in Primary Care Despite reported prevalence rates of 10% to 17% in community studies of depression and anxiety in older people (Flint, 1994; Livingston et al., 1990; Kirby et al., 1997; Van Marwijk et al., 1994), recognition by GPs and primary care teams remains low (Bhutani & Watts, 1999; Blanchard et al., 1995; Orrell et al., 2000; Shah, McNiece & Majeed, 2001; Watts et al., 2002). Identification rates for dementia are also low (Turner et al., 2004; VernooijDassen et al., 2005). Reasons for this have included lack of knowledge, negative attitudes, lack of confidence, low consultation rates for mental health problems and viewing dementia as a social not a medical problem (Bryans et al., 2003; Collins, Katona & Orrell, 1995; De Lepeleire et al., 1994; Reynolds, 1995; Shah, McNiece & Majeed, 2001; Turner et al., 2004; Vernooij-Dassen et al., 2005; Woolf, Woods & Reid, 1996; Zylstra & Steitz, 2000). Only a small proportion of older people identified with mental health problems or dementia are treated in primary care or referred to specialist services (Iliffe et al., 1991). Possible reasons for low levels of intervention have included negative attitudes to ageing, misconceptions about the efficacy of medication or psychological treatments (Boise et al., 1999; Callahan et al., 1996; Collins et al., 1995; Lawlor et al., 2002; Orrell et al., 2000; Turner et al., 2004; Tylee & Katona, 1996). Treatment protocols have been shown to improve both recognition and treatment (Callahan et al., 1996) but educational and consultancy approaches have not produced consistent improvements (Bower & Sibbald, 2000; Livingston et al., 2000; Thompson et al., 2000).

Availability of Psychological Therapies for Older People Within the UK, since the early 1980s, clinical psychologists have developed psychological assessment and intervention for people with dementia (Woods, 1999). Therapeutic

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approaches such as CBT (Dick et al., 1999; Laidlaw, 2003; see also Chapter 27 of this volume) and brief solution focused therapy (Hill, Babbs & Turner, 2001) have also been adapted to the psychological problems of older people. Despite these developments, older adults have been less likely to see a clinical psychologist than any other age group even though they are the heaviest users of the NHS (Gilleard et al., 1995). Access to clinical psychologists for older people remains limited with no specialist clinical psychology posts in some health authority areas (Department of Health, 2001). Despite recognition of the role that clinical psychology can offer (for example, the NSF for Older People), there is a shortage of clinical psychologists and often limited funding to develop posts. Where clinical psychology services for older people are provided, staffing levels are low with single-handed services common. Service provision has focused on patients with dementia and/or severe mental health problems who are often referred through psychiatrists and community mental health teams rather than via primary care. Consequently, clinical psychology services specifically for older people remain underdeveloped and there is limited peer-reviewed evidence around their organization. In some parts of the UK, psychological therapies are provided to older people as part of general adult primary care psychology services. It has been recognized that older people are not always referred on to such services (Department of Health, 2001).

How Can These Be Addressed? Given the prevalence of mental health problems in older adults and the low levels of identification and treatment in primary care, there are important implications for the provision of services. A service based on traditional models of mental health services is unlikely to appropriately address the psychological needs of older people in primary care. In addition, given GPs’ and primary care nurses’ apparent reluctance to refer, a service that can engage with the primary-care teams to improve their recognition and treatment of older people with mental health problems through a range of approaches is necessary.

MODELS OF SERVICE DELIVERY AND THE ROLE OF A CLINICAL PSYCHOLOGIST FOR OLDER PEOPLE IN PRIMARY CARE The three main models of service delivery by mental health professionals including clinical psychologists in primary care are a consultancy model, a liaison-attachment approach that may include colocation within primary care settings and an integrated approach where the clinical psychologist is a member of the primary care team. These models may be seen in countries where mental health services are relatively well developed.

Consultancy Model In the consultancy model, clinical psychologists provide their service within primary care settings. The service remains part of the secondary care framework and the clinical psychologist is not seen as part of the primary care team. To some extent the model can be seen as

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a shifted outpatient clinic (Dobmeyer et al., 2003; White, 2000). There are little changes to traditional practice and the clinical psychologist accepts referrals and manages them largely independently. The focus is on individual intervention provided through a series of appointments using the structure of the ‘50-minute hour’ (e.g. Beck, Emery & Greenberg, 1985). The benefits of this approach are that it retains the specialist, autonomous function of the clinical psychologist and provides specialist intervention for specific mental health problems. Providing the service within the primary care setting makes it more accessible to its patients and this can reduce ‘did not attend’ (DNA) rates (Brunning & Burd, 1993; Department of Health, 2004). In addition, the stigma associated with psychiatric institutions is not present in primary care settings which can also increase the use of services (Baty, 1998). The main disadvantages are that the numbers who receive such a service will be low and this often leads to long waiting lists (Burton & Ramsden, 1994). In addition, opportunities for regular contact and liaison with the primary care team are not routine nor necessarily expected as part of the service. Consequently, the development of shared care, training, liaison and teamwork is limited. This is an important issue for older people who often present with both physical and mental health problems.

Liaison-Attachment Within the liaison-attachment model, clinical psychologists provide a wider range of services than in the consultancy model. The clinical psychologist continues to provide individual interventions using the traditional ‘50-minute hour’. Interventions may be provided in a greater range of settings including general practices, health centres and the client’s own home. In addition to direct therapeutic services, clinical psychologists also provide teaching, training and consultancy to the primary care teams. Communication with the primary care team is promoted and the clinical psychologist seeks to improve the skills of the primary care team in the management of psychological problems. The benefits can include better identification and management of mental health problems, which are underrecognized in older people. One of the difficulties in setting up and maintaining such a service is the need to ensure the participation and cooperation of the members of the primary care team (Haley et al., 1998; Kolbakovsky, 2005). Some GPs and primary care nurses may have negative attitudes to mental health problems and/or older people. Many may see psychological approaches as irrelevant to their practice. The clinical psychologist has to be able to ‘sell’ his or her service (Kolbakovsky, 2005). The service provided in Salford links most closely to this approach and the service was cited as an example of best practice in the NSF for Older People (Department of Health, 2001). One aspect of providing citywide or local authority-wide services is the need to link with all the primary care teams within the area. The variations in practice and attitudes towards older people in primary care teams can result in patchy uptake of services and limited engagement in training for some in contrast with enthusiasm and appropriate use of the service by others.

The Integration Model In this model, the clinical psychologist is a member of the primary care team or extended primary care team (Dobmeyer et al., 2005). The clinical psychologist provides

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consultancy-based approaches to the primary care case managers (usually GPs and nurses). The aim is to provide early intervention by providing assessments and brief interventions as well as follow-up work with healthcare professionals to facilitate psychological intervention. The problems addressed will include stress-related and lifestyle problems, chronic health problems as well as the common mental health problems found in primary care (typically anxiety and depression). Shorter assessments and interventions are provided, typically around 15 to 30 minutes. Intervals between appointments may be longer, especially if the clinical psychologist is indirectly providing intervention through the primary healthcare professional. In addition, there is an explicit focus on providing feedback and training to the primary care teams to improve their skills. By enhancing the psychological skills of the primary care team, access to psychological approaches can be widened and may reduce the numbers waiting for intervention. The advantages of this way of working are that it reflects the structure of primary care. With the short appointment approach, more people can access the service and the focus is on early intervention and also health related issues. This approach has been adopted in the US by primary care psychologists with some degree of success (Bray, 2004; Dobmeyer et al., 2003; Masters et al., 2005) but there is little evidence for its efficacy for older people. The disadvantages are that it does not allow in-depth assessment or intervention for complex or chronic problems. Communication and multidisciplinary team issues may remain problematic. There are some groupwork approaches that seek to offer wide access and brief interventions (see, for example, White, 2000) but their accessibility to older people has been limited and groupwork approaches do not suit all (White & Freeman, 2000).

The Role of the Clinical Psychologist for Older People in Primary Care The specialist approach Clinical psychologists have traditionally been seen as occupying a specialist role within the NHS specializing with either a demographically defined (older people) or problem-defined population (early intervention in psychosis). The British Psychological Society (the professional body for psychologists in the UK) has supported this approach with its range of divisions and special interest groups developed in the past 20 years. Currently, clinical psychologists rarely specialize in more than one to two areas and focus on acquiring experience and knowledge to best provide services to the specialism. Often this knowledge is not exclusively on therapeutic approaches but relates to legislative issues (such as eligibility for free nursing care), statutory responsibilities (such as child protection) or services available for the client group in the local area. This is despite the emphasis in clinical psychology training on a range of skills, knowledge and experience that is suggestive of a generalist approach. Consequently, it may be that as a profession we underperform or undersell ourselves in terms of what we can offer.

The generalist approach The generalist approach can be seen as one where a clinical psychologist in primary care would see the whole range of presenting problems including all age groups. Of the three

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models of service delivery described above, the generalist approach lends itself best to the integrated model where the clinical psychologist, as a member of the primary care team, is available to provide consultancy as well as intervention and assessment to the primary care team. There are advantages for the team in being able to work with one clinical psychologist as opposed to a number of specialists. In addition it conforms to the generalist approach found in primary care where the primary care teams manage patients of all ages and problems, referring to specialists as appropriate. This presupposes that there will be specialists to whom clinical psychologists can refer. Further work would be required to determine what psychological interventions are offered as part of a generalist approach and what comes under the specialist umbrella. In the US, the generalist approach in primary care is growing with specialized training to develop the required knowledge and skills (Dobmeyer et al., 2003). Within the UK, the generalist approach has included a wider population (Baty et al., 2001; Bender, 1998; Papworth, 2000) but service delivery remains focused on traditional models of therapy provision. The area of primary care may be the most logical place to develop a generalist approach.

Generalist versus specialist In addressing the issue of generalist versus specialist clinical psychologist with respect to older people, a number of issues are important. Firstly, older people can present with both physical and mental health problems that require more complex assessment and intervention. Such an intervention may require a specialist understanding of the interaction between physical and mental health problems in older people in order to be able to provide appropriate therapeutic interventions. This is complicated by the comparatively limited (compared with younger adults) evidence base of the effectiveness of psychological therapies with older people. The specialist approach could be provided in a range of settings including primary care and should result in the most appropriate, tailored interventions being available to older people. A second issue is the scarcity of clinical psychologists generally and for older people in particular. This scarcity limits access and may encourage a focus on severe and complex problems within the mental health sector rather than early intervention and prevention. Therefore, this specialist approach does not lend itself to improving recognition and management of mental health problems in older people in primary care. In the US, primary care psychologists offer behavioural advice in relation to a range of lifestyle issues (such as obesity) as well as providing both direct and indirect approaches to chronic physical health problems. Shorter appointments are offered and multidisciplinary primary care collaborative working is the aim. This approach could lend itself to work with older people in primary care. Older people may often prefer shorter appointments (Woods, 1999), primary care settings are more accessible and an approach inclusive of both physical and mental health would address an older person’s needs holistically. There have been proposals in the UK suggesting a combined generalist and specialist approach (Bender, 1998; Papworth, 2000) whereby an individual clinical psychologist has a specialty (for example, older people, psychosis, learning disability) but provides generalist interventions either in primary care or a particular locality as part of his or her role. By providing a locality-based service the clinical psychologist may be better placed to build

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up relationships with key people within that locality. By providing the specialist role for either the same or a wider locality could allow the clinical psychologist to continue to offer the appropriate interventions without too much dilution of the role. There is still some dilution of specialist knowledge, and the models to date have made limited mention of advisory approaches and short appointments and interventions so that team-working and the promotion of psychological management within the locality and/or the primary care team remains limited. A further potential difficulty is in role definition and communication; it may be confusing for both the individual clinical psychologist and the healthcare staff with whom he or she works to differentiate between the generalist and specialist roles.

What roles should a clinical psychologist working with older people in primary care adopt? A potential solution to the issue of generalist versus specialist approach is to retain the specialist approach defined by demographics or problem. This appears to work in other aspects of healthcare, for example an orthopaedic surgeon would not offer a gastroenterology service. This does not appear to cause confusion for patients or healthcare professionals in their interactions with such a service. The shift to a primary care led NHS is leading to the provision of a wider range of services within primary care and management by the primary care teams of a wider range problems. It is unclear to what extent this has resulted in collaborative multidisciplinary working between the specialist and the primary care team, or whether the provision in primary care is a shifted general hospital outpatient clinic. For clinical psychologists working with older people this could be an opportunity to develop our roles beyond traditional therapy delivery, and use our systemic and organizational skills to work with primary care teams to improve the psychological wellbeing of older people as widely as possible. Such a role should encompass providing specialist interventions but also consultancy, training, shared care and teamworking in primary care to improve the under-recognition, management and treatment of older people’s mental health problems in primary care. Some questions still remain unanswered and to some extent these may depend on the resources available to provide mental health services to older people. The question of when an individual with a particular problem should be seen by secondary mental healthcare staff requires clarification. This is most likely to depend on the nature of the problem but there will be some degree of overlap at the interface. A further consideration is that a complex problem that does not require multidisciplinary input may be better managed in primary care. In any service, there will be ongoing discussions around this and these also relate to what services are available for older people. An example of the possible criteria is displayed in Table 19.1.

CONSTRAINTS ON DEVELOPMENT While there continues to be an increase in the numbers of clinical psychologists in the UK, they still remain a limited resource both in the UK and the rest of the world. Given the

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Table 19.1 Suggested differences in service between primary care and secondary care mental health Primary care

Secondary care

Referrals r Psychological distress. r Early stages of dementia not complicated by marked behavioural and emotional issues. r Discrete mental health problems likely to be amenable to short term limited intervention. r No or limited multidisciplinary involvement from secondary mental health services but perhaps some involvement with the primary care team and/or social services.

r r r

Intervention r Short term. r Individual client focused. r CBT, counselling, solution-focused brief therapies. r Liaison with primary care and/or social services. r Limited family/carer involvement. r Preventative approaches and mental health promotion.

r

Outcomes r Discharge to primary care, no long term follow up. r Refer to secondary mental healthcare. r Refer to social services, voluntary agencies, befriending scheme.

r

r

r r r r

r r r r

Severe and enduring mental illness. Complicated depression. Poor response to psychological therapies. Dementia sufferer/carer requiring extensive involvement and long-term follow-up.

Requiring mental health multidisciplinary involvement. Requiring psychiatric intervention. Requiring multi-disciplinary involvement including social services and/or other NHS or voluntary services. Requiring in-patient admission. Requiring specialized day hospital input. Discharge to primary care, no long term follow up. Refer on to mental health professional working in primary care. Refer to social services, voluntary agencies, befriending scheme. Ongoing intervention. Institutionalization.

limited availability of psychological therapies in primary care for older people, workforce planning needs to address the issue of how to increase access to psychological approaches. In England, the development of primary mental health services has included a range of different professional groups as service providers, including counsellors and cognitive behaviour therapists as well as mental health nurses. In addition, new roles have been created, such as Primary Care Graduate Mental Health Workers (PCGMHWs), gateway workers and mental health practitioners. These services have sought to increase access to psychological therapies and reduce waiting times but investment has been patchy and reporting on performance limited to date (Care Services Improvement Partnership, 2006). Specific projects such as pilots to increase access to psychological therapies as well as reducing the numbers of people on incapacity benefit with mental health problems via the provision of psychological therapies (‘Pathways to Work’) are currently in progress but not due to report until the end of 2007. These initiatives have focused mainly on the direct provision of psychological therapies to a greater number of people. This does not include the range of activity that could be addressed

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in primary care including the consultancy roles undertaken by clinical psychologists in this area.

Future Directions Development of mental health services for older people outside the UK remains very variable with comprehensive services extremely rare; most service provision is patchy or nonexistent. Demographic changes in the world’s population show an increase in older people in all countries. In the developed countries, this is associated with a lowered birth rate, which is likely to lead to financial and resource constraints in providing health services for all. There may not be enough people to pay enough taxes to provide the service coupled with a reduction in the numbers of available healthcare staff. Consequently, there is a need to think creatively how mental health (including clinical psychology) services can be offered safely, effectively and widely to the older adult population at a reasonable cost. Clinical psychologists can work towards some of the solutions to these future problems by experimentally developing, testing and evaluating the best ways of improving the psychological well-being of older people. This is likely to include work with a range of partners including primary care, housing, education that reflects the WHO vision of holistic primary care.

SUMMARY AND CONCLUSIONS There is limited provision of clinical psychology for older people including in primary care throughout the world. Where services have developed, they have focused on younger adults or on secondary care provision for severe mental health problems. Recent developments in primary care in the US and UK have suggested a move away from the traditional specialist outpatient approach to one that promotes psychological wellbeing through collaboration with primary care teams as well as providing short-term and short-appointment intervention work. There is a need for collaborative working with primary care teams that includes consultancy and training. Future directions for clinical psychology with older people in primary care must include improving the evidence base on what interventions work for older people who may present with a range of problems that include physical as well as mental ill-health. Improving recognition, management and treatment by the primary care teams remains a priority so that the population needs may be more comprehensively addressed.

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Dobmeyer, A., Rowan, A., Etherage, J. & Wilson, R. (2003) Training Psychology Interns in Primary Behavioral Health Care. Professional Psychology: Research and Practice, 34, 586–594. Donnison, J. & Burd, M. (1994) Partnership in clinical practice. Clinical Psychology Forum, 65, 15–18. Finch, J. (2004) Evaluating Mental Health Services for Older People, Radcliffe Publishing Ltd, Oxford. Flint, A.J. (1994) Epidemiology of anxiety disorders in the elderly. American Journal of Psychiatry, 151, 640–9. Gilleard, C., Askham, J., Biggs, S. et al. (1995) Psychology, ageism and healthcare: a DCP symposium. Clinical Psychology Forum, 85, 14–15. Goldberg, D. & Hillier, V. (1979) A scaled version of the GHQ. Psychological Medicine, 9, 139–45. Gray, G., Brody, D. & Johnson, D. (2005) The evolution of behavioral primary care. Professional Psychology: Research and Practice, 36, 123–9. Haley, W., McDaniel, S., Bray, J. et al. (1998) Psychological Practice in Primary Care Settings: Practical Tips for Clinicians. Professional Psychology: Research and Practice, 29, 237–44. Hill, R., Babbs, M. & Turner, S. (2001) ‘Sometimes people can have a better solution than you.’ Using a brief solution-focused therapy group with depressed older people. Clinical Psychology, 6, 11–16. Johri, M., Beland, F. & Bergman, H. (2003) International experiments in integrated care for the elderly: a synthesis of the evidence. International Journal of Geriatric Psychiatry, 18, 222–35. Kear-Colwell, J. (1998) Clinical psychology in Australia: an expatriate’s view. Clinical Psychology Forum, 120, 35–37. Kirby, M., Bruce, I., Radic, A. et al. (1997) Mental disorders among the community-dwelling elderly in Dublin. British Journal of Psychiatry, 171, 369–72. Kolbasovsky, A., Reich, L., Romano, I. & Jaramillo, B. (2005) Integrating behavioral health into primary care settings: a pilot project. Professional Psychology: Research and Practice, 36, 130–5. Laidlaw, K. (2003) Cognitive Behaviour Therapy with Older People. John Wiley & Sons, Chichester. Lawlor, B.A., Swanwick, G. & Kelleher, M. (2002) Clinical practice in dementia care across the EU, in Alzheimer’s Disease: Policy and Practice Across Europe (eds M. Warner, S. Furnish, M. Longley & B.A. Lawlor), Radcliffe Medical Press, Oxford, pp. 135–48. Livingston, G., Hawkins, A., Graham, N. et al. (1990) The Gospel Oak Study: prevalence rates of dementia, depression and activity limitation among elderly residents in Inner London. Psychological Medicine, 20, 137–46. Livingston, G., Yard, P., Beard, A. & Katona, C. (2000) A nurse-co-ordinated initiative addressing primary care professionals’ attitudes to and problem-solving in depression in older people – A pilot study. International Journal of Geriatric Psychiatry, 15, 401–5. Masters, K., Stillman, A., Browning, A. & Davis, J. (2005) Primary care psychology training on campus: collaboration within a student health center. Professional Psychology: Research and Practice, 36, 144–50. McCormick, R. & Pike, V. (2001) Groupwork for older adults with anxiety: a clinical exploration in a primary care setting. Clinical Psychology, 2, 34–7. McGuire, B. (1999) Clinical psychology in Australia. Clinical Psychology Forum, 127, 24–7. Medlik, L. (1999) Primary care groups and clinical psychology. Clinical Psychology Forum, 131, 9–12. Miller, R. (1994) Clinical psychology and counselling in primary care: opening the stable door. Clinical Psychology Forum, 65, 11–14. National Institute for Clinical Excellence (2002) Beta Interferon and Glatiramer Acetate for the Treatment of Multiple Sclerosis (Rep. No. Technology Appraisal Guidance No. 32). NICE, London. National Institute for Clinical Excellence (2005a) NICE Clinical Practice Guideline 22 (December 2004) Anxiety: management of anxiety (panic disorder, with or without agoraphobia, and generalised anxiety disorder) in adults in primary, secondary and community care. NICE, London. National Institute for Clinical Excellence (2005b) NICE Clinical Guideline 23 (December 2004) Depression: Management of Depression in Primary and Secondary Care. Quick Reference Guide. NICE, London.

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Ageing, dementia and people with intellectual disability Chris Oliver, Dawn Adams University of Birmingham, Birmingham UK

and Sunny Kalsy Birmingham Learning Disabilities Service, Sutton Coldfield, UK

The biological, psychological and social correlates and consequences of ageing in people with intellectual disabilities are similar to those seen in the general population. Physical health problems and their psychological and social consequences increase with age, decline in cognitive and behavioural capacity of varying degrees is evident and social networks, status and opportunity diminish in older groups. Many of the responses to these issues, by services generally and psychologists specifically, may not differ in principle from those for the general population. However, significant variability in the characteristics of those who use intellectual disability (ID) services, demographic, service and social factors warrant comment as they are both more pertinent for people with ID and interact with the ageing process. As is the case for the general population, life expectancy has risen significantly for those with intellectual disabilities, and the mean life expectancy for those with mild ID is now almost equal to that of the general population (Bittles et al., 2002). There are a number of immediate consequences to this increased longevity and services for people with ID must respond to the needs of this new, older population.

THE SOCIAL AND HEALTH CONTEXT The social context in which people with ID live will be one determinant of their experience of ageing. Poorer health generally is associated with the accumulation of risk across the lifespan (Emerson, 2004). Risks specifically attributed to poor health in individuals with intellectual disabilities include disadvantaged lifestyles, late recognition of illness and underlying genetic disorder (Cooper, 1999). There is growing evidence that children with

Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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severe ID are more likely to grow up in poverty than their typically developing peers and are therefore at risk for poorer health and social outcomes (see Emerson, 2004 and Graham, 2005 for reviews). In addition to socio-economic deprivation, unemployment is the norm, even for people with mild ID. Access to services for older adults with ID is also compromised; levels of preventative care are lower than for the general population (Ouellette-Kuntz, 2005) as is frequency of contact with general practitioners (Cooper, 1998) and recognition and diagnosis of health problems (Beange, McElduff & Baker, 1995). Healthcare staff may also not be aware of the raised prevalence of some health conditions in people with ID, some of which are age related. Individuals with ID therefore fit poorly into a healthcare system where no care is received unless requested (Cooper, 1998), creating a real threat to healthy ageing.

VARIABILITY WITHIN INTELLECTUAL DISABILITY AND INTERACTIONS WITH AGEING Variability in previous life experience, degree and cause of ID are major factors that will impact on the ageing process and the individual’s experience of ageing. Many, but not all, older people with ID will have been exposed to early separation from the family, socially and materially impoverished living environments and limited or no educational opportunities prior to community living initiatives. Degree of ID is a significant source of variability in the ageing process but mobility and capacity for self-care are the most significant predictors of longevity. Those with profound ID may expect to live into their late thirties and the corresponding ages for those with severe and moderate/mild ID are approximately 50 and 60 respectively (Strauss & Eyman, 1996). Interestingly, survival for those who have severe ID is similar to those with moderate/mild ID after the age of 30. Thus, it may be assumed that services and families may be supporting people with severe ID and significant care needs into their 50s and 60s while parents approach their 80s. There is an obvious implication for older parents of people with severe ID given the need for basic care on a daily basis. Finally, degree of intellectual disability might interact with ageing as there is some evidence suggesting that people with Down syndrome may show decline at an earlier stage if they have a more substantial degree of ID (Oliver et al., 1998). With the shift to social models of disability, clinical psychology has paid less attention to causes of ID, despite substantial evidence that genetic and other causes can be directly and indirectly related to physical disorder and difference alongside cognitive, behavioural and emotional presentation (O’Brien & Yule, 1995). These differences inevitably interact with ageing. The most obvious example is the reduced longevity in Down syndrome, by approximately 10 years depending on degree of ID, combined with a higher prevalence of age-related disorders such as cataracts, hearing loss, alopecia and Alzheimer-related dementia (Oliver & Holland, 1986). Given the recent increase in longevity for those with other genetic disorders it is likely that age-related changes will now begin to emerge, as the newly identified population is described. Clinical and health psychology must become aware of the importance of the cause of ID throughout the lifespan.

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AGEING AND PHYSICAL HEALTH People with ID experience high rates of physical health problems (Cooper, 1998), particularly with increasing age (Janicki et al., 2002). This highlights the need for vigilance amongst caregivers (Janicki et al., 2002) although eliciting reliable self-reports of health problems from individuals with ID is becoming increasingly possible (e.g. Ruddick & Oliver, 2005). Common age-related physical changes that are experienced by both the general population and those with ID include mobility problems, incontinence, hypertension and sensory impairments and, more recently, obesity (Cooper, 1998; Evenhuis, 1995a,b; Janicki et al., 2002). Adults with ID may also present with coincidental and disability-linked conditions that are not found to the same extent in the general population (Janicki et al., 2002). Epilepsy (Branford & Collacott, 1994), acquired cataracts (Zigman et al., 2004) and otitis media (Hagerman, Altshul-Stark & McBogg, 1987) are all reported to affect at least 20% of adults with ID. Down syndrome is associated with a number of health concerns related to ageing including a greater prevalence of obesity (Braunschweig Gomez et al., 2004), hypothyroidism (Rubello et al., 1995) and dementia (discussed below). Premature menopause is also seen in individuals with Down syndrome (Cosgrave et al., 1999) and to some extent in other sex chromosome disorders (Sybert, 2002). A further review of syndrome-specific physical health problems is provided in Wallace (2004) and Berg et al. (2007).

AGEING AND PSYCHOLOGICAL CHANGE Prevalence estimates of mental health problems, although variable and often derived using weak methodology (see Hatton, 2002) are consistently higher for individuals with ID than for the general population (Campbell & Malone, 1991). The recognition and diagnosis of a mental health problem in individuals with ID may be compromised by language limitations, diagnostic overshadowing or misinterpretation of syndrome-specific behaviours (Moss et al., 2000). As with physical health problems, older adults with ID may exhibit the same types of mental health problems as the general population (Foelker & Luke, 1989) including depression (Harper & Wadsworth, 1990) and anxiety (Cooper, 1999). Age-associated psychiatric disorders have also been noted; dementia is reportedly common among adults with ID affecting approximately 15.6% of 65-74 year olds, 23.5% of 75-84 year olds and 70.0% of 85-94 year olds of adults with ID excluding Down syndrome (Cooper, 1997).

DEMENTIA IN ADULTS WITH DOWN SYNDROME Down syndrome is the most common genetically caused intellectual disability (Busciglio & Yankner, 1995). Virtually all adults with Down syndrome over the age of 40 show the neuropathological signs of Alzheimer’s disease at autopsy (Wisniewski, Wisniewski & Wen, 1985). However, a clinical diagnosis is only given in 0-2% of 30 to 39 year olds, 5.7% to 13.8% of 40 to 49 year olds, 25% to 36.1% of 50 to 59 year olds and 33.3% to 54.5% of

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60 to 69 year olds (Holland et al., 1998; Prasher, 1995; Tyrrell et al., 2001). This inconsistency between neuropathological and clinical prevalence rates may be due to survivor effects (Carr, 2000), diagnostic criteria used (see Holland et al., 1998) or variable presentation (see Oliver & Holland, 1986).

ASSESSMENT AND DIAGNOSIS OF DEMENTIA IN DOWN SYNDROME There are a number of strategies that may be adopted with regard to the assessment of dementia in people with ID (Oliver, 1999). The ‘retrospective’ strategy involves waiting for referral (commonly triggered by observation of inexplicable change) and then undertaking assessments and comparing results with those from past assessments (which are rarely available or applicable). Difficulties with this approach include inaccuracy in estimating and appraising rate of decline, especially for individuals with low baseline scores (see Oliver & Kalsy, 2005). The alternative ‘prospective’ strategy ensures that adults with ID who are at high risk for developing dementia have a baseline assessment as they approach high-risk age. This too is associated with problems including high cost, persistent floor effects and differential diagnosis at an early stage (Oliver, 1999). Assessments should be both comprehensive, by combining both informant-based and neuropsychological measures and specific, by using assessment methods and measures developed for the detection of dementia in adults with ID. Those that have been used and evaluated in the current literature include global carer screening questionnaires – Dementia Questionnaire for Persons with Mental Retardation (Evenhuis, 1992, 1996); Dementia Scale for Down syndrome (Gedye, 1995) and the newly available CAMDEX-DS. (Ball et al., 2006) – questionnaires specifically concerned with behavioural change relating to dementia (Assessment for Adults with Developmental Disabilities – Kalsy et al., 2001 – and neuropsychological tests of cognitive functioning , such as the Neuropsychological Assessment of Dementia in Adults with Intellectual Disabilities (Oliver et al., 1998), the Rivermead Behavioural Memory Test for Children (Aldrich & Wilson, 1991) and the Dalton/McMurray Visual Memory Test: Delayed Matching to Sample Cognitive Test (Dalton, 1995). Extensive reviews and recommendations of methods and measures are provided in Aylward et al. (1997), Burt and Aylward (2000), Kalsy and Oliver (2005), Oliver (1999). Once information from neuropsychological and informant-based measures has been collated, it should be compared to diagnostic criteria for dementia. Preference is currently for ICD-10 diagnostic criteria as they consider both ‘cognitive’ and ‘noncognitive’ aspects of dementia such as apathy or irritability (Aylward et al., 1997).

BEHAVIOURAL PRESENTATION OF DEMENTIA IN DOWN SYNDROME Early studies suggested changes in memory are the earliest indicators of dementia in adults with Down syndrome (for example, Oliver et al., 1998). However, the perception of decline and its clinical presentation will depend upon the individual’s premorbid level of functioning and upon demands presented in everyday life (Aylward et al., 1997). Contemporary research

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(for example, Holland et al., 2000; Nelson et al., 1995) suggests that behavioural and personality changes are the earliest changes observed by carers. There is increasing evidence for frontal-type presentation in Down syndrome, which may be due to the pre-existing neurological difference in Down syndrome interacting with Alzheimer-like pathology in a way that confirms and extends the reserve capacity hypothesis that suggests that those with a more severe degree of intellectual disability will experience earlier change (Holland et al., 1998, 2000). From a clinical perspective, change of any magnitude in adults over the age of 30 with Down syndrome (and, arguably, any individual with ID over the age of 50) should be investigated for two reasons: firstly, to facilitate prompt and accurate diagnosis, and secondly for quality of life issues, in order to allow for life planning and so that carers, who report changes relating to cognitive decline as problematic, can receive support (Oliver et al., 2000).

THE SERVICE CONTEXT FOR OLDER ADULTS WITH INTELLECTUAL DISABILITY Local services need to develop initiatives to detect and reduce the physical and mental health problems in older adults with ID that are often not addressed (Janicki et al., 1996). Internationally, service providers have agreed sets of guidance and frameworks for service delivery for older adults with ID that emphasize the need for early assessment and diagnosis, coordinated services, carer support and individualized packages of care (Janicki et al., 1996; Rees, Peng Chye & Lee, 2006; Wilkinson & Janicki 2002). These frameworks have been developed within overall service policy and strategic plans. For example in England, the key policy drivers are ‘Valuing People’ and the ‘National Service Framework for Older People’ (Department of Health 2001a,b). Across all guidance there is a key emphasis on early detection and diagnosis of conditions such as dementia to allow access to treatment and planning of future care relating to prognosis. Service providers and families must consider and confront problems associated with in-home and community-based support for ageing people with ID who may also have dementia (Dodd, 2003; Wilkinson & Janicki, 2002).

MODELS OF SERVICE DELIVERY AND PROVISION In response to policy influences, it is recommended that services adopt the seven ‘Edinburgh Principles’ for people with ID and dementia (Wilkinson & Janicki, 2002). These include the promotion of quality of life and person-centred approaches, the involvement of the individual and caregivers in assessment, planning and provision and access to appropriate services and support for ageing people with ID and dementia. Models of care and service provision are described and reviewed in Janicki and Dalton (1999) and Wilkinson et al. (2004).

PSYCHOLOGICAL SERVICE RESPONSES In addition to the clinical roles of assessment and diagnosis of age-related conditions such as dementia and delivery of training, psychologists are called on to develop and

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implement interventions to facilitate the understanding and management of behaviour disorder expressed by people with ID as they age. However, the literature is sparse on models of psychological formulation and intervention other than at the level of broad practice guidelines (Janicki et al.,1996). Psychological interventions described in the general literature on working with older people could be adapted for use with people with ID (see Opie, Rosewarne & O’Connor 1999 for a review), as a similar three-stage model is often used to describe the clinical progress of the disease in both populations (Dalton & Janicki 1999). Interventions should consider and address multiple influences on behaviour in order to support both the individual and carers in understanding, coping with and managing behaviour disorder. This consideration and application of behavioural and systemic contexts alongside a biomedical appreciation (of any associated medical conditions and/or the stages of dementia) enables greater intervention choice. Kalsy et al. (2005) provide a comprehensive three-stage model of psychological interventions with older adults with ID and dementia. The core aims of these psychological interventions, which are organized around the stage of dementia that the individual may be presenting with, are to enable the retention and maintenance of skills, optimize a sense of personhood and emotional wellbeing and compensate for changes in an individual’s functional abilities.

CONCLUSIONS An increased life expectancy for individuals with ID has given rise to an older population about whom knowledge is limited. Only recently has the literature started to consider aspects such as cause and level of ID when estimating life expectancies (for example, Strauss & Eyman, 1996) and reporting physical and mental health problems (for example, Janicki et al., 2002). This has created a growing but inconsistent literature on the ageing process and associated difficulties. Age-related physical and mental health problems, such as depression, arthritis and cataracts are being increasingly reported in the ageing ID population alongside syndromespecific disability-linked conditions. Of note is the elevated prevalence of dementia in adults with ID and, in particular, adults with Down syndrome. The exact course and presentation of dementia in ID and Down syndrome remains unknown despite the extensive availability of assessment tests and batteries. For this reason, it is recommended that for both diagnostic and quality of life purposes, behavioural or cognitive changes in adults with Down syndrome over 30 (and ID over 50) should be investigated. Service providers should be educated and equipped to recognize and manage both physical and mental health changes associated with the ageing process. Frameworks and guidelines have been produced, highlighting the key issues for the individuals, carers and service providers. However, there is comparatively less literature regarding specific interventions for ageing adults with ID which must consider a complex interaction of genetics, socioeconomic background and context alongside environmental and caregiver relationships. Literature may not be available for such specifics until more is known about the basics of ageing in such a varied population.

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REFERENCES Aldrich, F. & Wilson, B. (1991) Rivermead Behavioural Memory Test for Children (RBMT-C): a preliminary evaluation. British Journal of Clinical Psychology, 30, 161–8. Aylward, E., Burt, D., Thorpe, L. et al. (1997) Diagnosis of dementia in individuals with intellectual disability. Journal of Intellectual Disability Research, 41, 152–64. Ball, S., Holland, A., Huppert, F. et al. (2006) CAMDEX-DS: Dementia Test for People with Down Syndrome. Cambridge University Press, Cambridge. Beange, H., McElduff, A., & Baker, W. (1995) Medical disorders of adults with mental retardation: a population study. American Journal of Mental Retardation, 99, 595–604. Berg, K., Arron, K., Burbidge, C. et al. (2007) Carer reported contemporary health problems in people with severe learning disability and genetic syndromes. Journal of Policy and Practice in Intellectual Disabilities, 4, 120–8. Bittles, A., Petterson, B., Sullivan, S. et al. (2002) The influence of intellectual disability on life expectancy. Journal of Gerontology Series A – Biological Sciences and Medical Sciences, 57, M470–M472. Branford, D. & Collacott, R. (1994) Comparison of community and institutional prescription of antiepileptic drugs for individuals with learning disabilities. Journal of Intellectual.Disability Research, 38, 561–6. Braunschweig, C., Gomez, S., Sheean, P. et al. (2004) Nutritional status and risk factors for chronic disease in urban-dwelling adults with Down syndrome. American Journal of Mental Retardation, 109, 186–93. Burt, D. & Aylward, E. (2000) Test battery for the diagnosis of dementia in individuals with intellectual disability. Working Group for the Establishment of Criteria for the Diagnosis of Dementia in Individuals with Intellectual Disability. Journal of Intellectual Disability Research, 44, 175–80. Busciglio, J. & Yankner, B. (1995) Apoptosis and increased generation of reactive oxygen species in Down syndrome neurons in vitro. Nature, 378, 776–79. Campbell, M. & Malone, R.P. (1991) Mental retardation and psychiatric disorders. Hospital and Community Psychiatry, 42, 374–9. Carr, J. (2000) Intellectual and daily living skills of 30-year-olds with Down syndrome: continuation of a longitudinal study. Journal of Applied Research in Intellectual Disabilities, 13, 1–16. Cooper, S.A. (1997) High prevalence of dementia among people with learning disabilities not attributable to Down syndrome. Psychological Medicine, 27, 609–16. Cooper, S.A. (1998) Clinical study of the effects of age on the physical health of adults with mental retardation. American Journal of Mental Retardation, 102, 582–9. Cooper, S.A. (1999) The relationship between psychiatric and physical health in elderly people with intellectual disability. Journal of Intellectual Disability Research, 43, 54–60. Cosgrave, M.P., Tyrrell, J., McCarron, M. et al. (1999) Age at onset of dementia and age of menopause in women with Down syndrome. Journal of Intellectual Disability Research, 43, 461–5. Dalton, A.J. (1995) Dalton/McMurray Visual Memory Test: Delayed Matching to Sample Cognitive Test. Byte Craft Ltd., Ontario, Canada. Dalton, A.J. & Janicki, M.P. (1999) Ageing and dementia, in Dementia, Aging and Intellectual Disabilities: A Handbook (eds M.P. Janicki & A.J. Dalton). Bruner/Mazel, Philadelphia PA, pp. 5–31. Department of Health (2001a) National Service Framework for Older People. The Stationery Office, London. Department of Health (2001b) Valuing People: A New Strategy for Learning Disability for the Twentyfirst Century. The Stationery Office, London. Dodd, K. (2003) Supporting people with Down syndrome and dementia. Tizard Intellectual Disability Review, 8, 14–18. Emerson, E. (2004) Poverty and children with intellectual disabilities in the world’s richer countries. Journal of Intellectual and Developmental Disability, 29, 319–38. Evenhuis, H.M. (1995a) Medical aspects of ageing in a population with intellectual disability: II. Hearing impairment. Journal of Intellectual Disability Research, 39, 27–33.

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Evenhuis, H.M. (1995b) Medical aspects of ageing in a population with intellectual disability: I. Visual impairment. Journal of Intellectual Disability Research, 39, 19–25. Evenhuis, H.M. (1992) Evaluation of a screening instrument for dementia in ageing mentally retarded persons. Journal of Intellectual Disability Research, 36(4), 337–47. Evenhuis, H.M. (1996) Further evaluation of the Dementia Questionnaire for Persons with Mental Retardation (DMR) Journal of Intellectual Disability Research, 40(4), 369–73. Foelker,G.A., & Luke, E.A. (1989) Mental health issues for the aging mentally retarded population. The Journal of Applied Gerontology, 8, 242–50. Graham, H. (2005) Intellectual disabilities and socioeconomic inequalities in health: an overview of research. Journal of Applied Research in Intellectual Disability, 18, 101–11. Hagerman, R.J., Altshul-Stark, D. & McBogg, P. (1987) Recurrent otitis media in the fragile X syndrome. American Journal of Disability in Children, 141, 184–7. Harper, D.C. & Wadsworth, J.S. (1992) Improving health care communication for persons with mental retardation. Public Health Rep, 107, 297–302. Hatton,C. (2002) Psychosocial interventions for adults with intellectual disabilities and mental health problems: a review. Journal of Mental Health, 11, 357–74. Holland, A.J., Hon, J., Huppert, F.A. et al. (1998) Population-based study of the prevalence and presentation of dementia in adults with Down syndrome. British Journal of Psychiatry, 172, 493–8. Holland, A.J., Hon, J., Huppert, F.A. & Stevens, F. (2000) Incidence and course of dementia in people with Down syndrome: findings from a population-based study. Journal of Intellectual Disability Research, 44, 138–46. Janicki, M.P., Davidson, P.W., Henderson, C.M. et al. (2002) Health characteristics and health services utilization in older adults with intellectual disability living in community residences. Journal of Intellectual Disability Research, 46, 287–98. Janicki, M.P., Heller, T., Seltzer, G.B. & Hogg, J. (1996) Practice guidelines for the clinical assessment and care management of Alzheimer’s disease and other dementias among adults with intellectual disability. Journal of Intellectual Disability Research, 40, 373–82. Janicki, M.P. & Dalton, A.J. (1999) Dementia, Aging and Intellectual Disabilities: A Handbook. Bruner/Mazel, Philadelphia PA. Kalsy, S., McQuillan, S., Adams, D. et al. (2005) A proactive psychological screening strategy for dementia in adults with Down syndrome: preliminary description of service use and evaluation. Journal of Policy and Practice in Intellectual Disabilities, 2, 116–25. Kalsy, S, McQuillan, S, Oliver, C. & Hall, S. (2002) Assessment for Adults with Developmental Disabilities (AADS). University of Birmingham & South Birmingham Primary Care NHS Trust, Birmingham. Kalsy, S. & Oliver, C. (2005) The assessment of dementia in people with intellectual disabilities: key assessment instruments, in Assessing Adults with Intellectual Disabilities (eds J. Hogg & A. Langa). Blackwell, Oxford. Moss, S., Bouras, N. & Holt, G. (2000) Mental health services for people with intellectual disability: a conceptual framework. Journal of Intellectual Disability Research, 44, 97–107. Nelson, L., Lott, I., Touchette, P. et al. (1995) Detection of Alzheimer disease in individuals with Down syndrome. American Journal of Mental Retardation, 99, 616–22. O’Brien, G., & Yule, W. (1995) Behavioural Phenotypes. MacKeith Press, London. Oliver, C. (1999) Perspectives on assessment and evaluation, in Dementia, Aging, and Intellectual Disabilities: A Handbook (eds M.P. Janicki & A.J. Dalton). Philadelphia PA, Taylor & Francis/Bruner Mazel, pp. 123–40. Oliver, C., Crayton, L., Holland, A.J. & Hall, S. (2000) Acquired cognitive impairments in adults with Down syndrome: effects on the individual, carers and services. American Journal of Mental Retardation, 105, 455–65. Oliver, C., Crayton, L., Holland, A. et al. (1998) A four year prospective study of age-related cognitive change in adults with Down syndrome. Psychological Medicine, 28, 1365–77. Oliver, C. & Holland, A. (1986) Down syndrome and Alzheimer’s disease: a review. Psychological Medicine, 16, 307–22.

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Oliver, C. & Kalsy, S. (2005) The assessment of dementia in people with intellectual disabilities: context strategy and methods, in Assessing Adults with Intellectual Disabilities (eds J. Hogg & A. Langa). Blackwell Publishing, Oxford. Opie, J, Rosewarne, R. & O’Connor, D.W. (1999) The efficacy of psychological approaches to behaviour disorders in dementia: a systematic literature review. Australia and New Zealand Journal of Psychiatry, 33, 789–99. Ouellette-Kuntz, H. (2005) Understanding health disparities and inequities faced by individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 18, 113–21. Prasher, V.P. (1995) Overweight and obesity amongst Down syndrome adults. Journal of Intellectual Disability Research, 39, 437–41. Rees, G., Peng Chye, A. & Lee, S. (2006) Dementia in the Asia Pacific Region: The Epidemic is Here. Alzheimer’s Disease International, Singapore. Rubello, D., Pozzan, G.B., Casara, D. et al. (1995) Natural course of subclinical hypothyroidism in Down syndrome: prospective study results and therapeutic considerations. Journal of Endocrinological Investigation, 18, 35–40. Ruddick, L. & Oliver, C. (2005) The development of a health status measure for self-report by people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 18, 143–50. Strauss, D. & Eyman, R. (1996) Mortality of people with mental retardation in California with and without Down syndrome. American Journal of Mental Retardation, 100, 643–53. Sybert, V.P. (2002) Phenotypic effects of mosaicism for a 47, XXX cell line in Turner syndrome. Journal of Medicine and Genetics, 39, 217–20. Turk, V., Dodd, K., & Christmas, M. (2001) Down Syndrome and Dementia: A Briefing for Commissioners. Foundation for People with Learning Disabilities, London. Tyrrell, J., Cosgrave, M., McCarron, M. et al. (2001) Dementia in people with Down’s syndrome. International Journal of Geriatric Psychiatry, 16, 1168–74. Wallace, R.A. (2004) Risk factors for coronary artery disease among individuals with rare syndrome intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1, 42–51. Wilkinson, H. & Janicki, M.P. (2002) The Edinburgh Principles. Journal of Intellectual Disability Research, 46, 279–84. Wilkinson, H., Kerr, D., Cunningham, C. & Rae, C. (2004) Home for Good? Preparing to Support People with Learning Difficulties in Residential Settings when they Develop Dementia. Pavilion Publishing/Joseph Rowntree Foundation, Brighton. Wisniewski, K.E, Wisniewski, H.M. & Wen, G.Y. (1985) Occurrence of neuropathological changes and dementia of Alzheimer’s disease in Down syndrome. Annals of Neurology, 17, 278–82. Zigman, W.B., Schupf, N., Devenny, D.A. et al. (2004) Incidence and prevalence of dementia in elderly adults with mental retardation without Down syndrome. American Journal of Mental Retardation, 109, 126–41.

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Palliative care for people with dementia: principles, practice and implications Katherine Froggatt Lancaster University, Lancaster UK

and Murna Downs, Neil Small University of Bradford, Bradford UK

The timing and nature of dying in Western societies is changing as individuals are living longer and dying older. Linked to this is an increased prevalence of dementia (Hofman et al., 1991). Palliative care focuses upon the support of people as they live and die with life-limiting illnesses. Its origins were in the modern hospice movement, which initially met the needs of people dying with cancer. Since the 1960s a range of hospice and palliative care services have developed, including in-patient, day and home care services. From an initial focus on people with cancer, recent expansion and diversification in the speciality has sought to address the needs of people dying with other conditions (Addington-Hall 1998). The management of dying in old age is one of the key public health challenges that Western countries currently face (Davies & Higginson, 2004). In the UK, over 80% of deaths occur in people aged over 65 and it is recognized that older people, particularly those individuals in late old age, are disadvantaged with respect to care provision when dying (Seymour et al., 2005). Often living with chronic, multiple conditions, older people do not always fit neatly into the way services are structured, as these are often focused on single diseases. Services for older people generally do try to address such complexity, but there is not always a recognition of the dying that accompanies ageing, so again services do not encompass this aspect of a person’s needs (Small et al., in press). The inequity associated with old age with respect to care at the end of life is seen also for people with dementia, in part because of ageism associated with old age, but also for reasons of stigma (Cox & Cook 2002). Until recently, the initiatives that sought to meet the end of life needs of people with dementia have originated in the US and from the world of dementia services – see Volicer (1986) for the origins of this. Only recently in Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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the UK has mainstream palliative care begun to address these issues (National Council for Palliative Care, 2006), with similar interests developing in old age psychiatry (Hughes, 2006). Palliative care can inform the care that people dying with dementia receive. As is outlined in this chapter, what is known about the nature and experience of dying with dementia indicates there is a role for palliative care. In this chapter, the core principles of palliative care are applied to the specific needs of people dying with dementia and examples of current models of service provision provided. Implications for practitioners, specifically clinical psychologists, who seek to address the needs of people who will die with dementia are identified throughout the chapter.

DYING WITH DEMENTIA ‘Just as the lived experience of dementia varies considerably with individual personality, social circumstances and the biology of disease, so too the experience of dying with dementia will vary.’ (Cox & Cook 2002, pp. 92). People may die with dementia in a number of ways. This impacts upon their place and experience of death. Firstly, there are people who die with dementia but their death is caused by another medical condition, for example cancer or heart disease, something that can occur at any stage of their dementia. Secondly, people may die with a mixture of physical and mental conditions before their dementia has impacted greatly on their functioning. Thirdly, there are people living with advanced dementia who move into what is sometimes termed end-stage dementia and die of the complications of this condition. As the illness progresses for people with dementia, so the increased need for physical care and greater accommodation of behavioural changes may necessitate a change in the place of care. Some people with severe dementia may have to move into long-term care facilities such as nursing homes or residential care homes (Matthews & Dening, 2002). Some individuals may be able to remain in their own homes but are reliant on the availability of formal and informal sources of community support. Although there is only limited research considering the experience of people dying with dementia, what there is describes their experience as being sub-optimal across a number of care settings (Lloyd-Williams, 1996; Mitchell et al., 2004). It is recognized that people with dementia experience a range of unresolved symptoms, which impact on their quality of life (Lloyd-Williams, 1996; McCarthy et al., 1997). Behavioural and psychological problems which adversely affect people with dementia may also be present (Hughes et al., 2005). The family carers of people with dementia also have their own needs at the end of life. Much has been written about family carers’ experiences during the earlier stages of the illness (for example, Marriott 2003; see also chapters 16 and 32 of this volume for a detailed discussion of caregiving issues) but less is written about the later stages and after the death. The strain of caring for people with dementia in the home at the end of life is acknowledged (Diwan, Hougham & Sachs, 2004) alongside feelings of emotional burden and guilt (Albinsson & Strang 2003a, b). Lack of knowledge, ambivalence and uncertainty all shape the decision making family carers will be involved in towards the end of life for the person with dementia (Caron et al. 2005).

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PRINCIPLES OF PALLIATIVE CARE Palliative care is defined by the World Health Organisation (WHO) as: ‘An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’ (Sepulveda et al. 2002). The WHO stance on palliative care adopts a public health perspective (Sepulveda et al. 2002). A distinction between specialist and generalist palliative care (Australian Government Department of Health and Aging, 2004; National Institute for Clinical Excellence, 2004) has relevance for the care of people dying with dementia. Specialist palliative care is provided by professionals who specialize in palliative care for people with unresolved symptoms or complex psychosocial, end-of-life or bereavement issues. Specialist palliative care may be provided in specialist settings such as hospices, but also in hospitals, people’s homes and long-term care facilities. Generalist palliative care is provided by the professionals who provide general care to individuals in whatever care settings they are situated. These generalist professionals will often be supported by specialist palliative care teams. Five principles underpin the provision of generalist palliative care. These principles address the nature of death (its normality), when palliative care can be provided (early on and throughout the course of the illness), the focus of the care (physical, psychological and spiritual elements) and for whom it is relevant (individuals and their families).

APPLICATION OF THE PRINCIPLES OF PALLIATIVE CARE FOR PEOPLE WITH DEMENTIA The way in which the principles of palliative care are realized for people with dementia may be different than for people with cancer. This reflects the different illness trajectory that people with dementia may experience.

Affirm Life and Regard Death as a Normal Process Palliative care, with its commitment to an affirmation of life until death and a regard for dying as a normal process, challenges many influential societal discourses. Western society is regarded as being predominantly death denying (Mellor & Shilling, 1993). Within healthcare these values are mirrored in the search for a cure for all illnesses and a belief that functional ability should be maximized, even amongst older people. This view is seen, too, in the dementia world where much effort has been invested in attempting to maintain the functional and cognitive ability of people with dementia for as long as possible through pharmacological and cognition-focused interventions, with a relative under-emphasis on the needs of people with more severe dementia. Developments in dementia care, most notably person-centred care (Kitwood, 1997), emphasize the intrinsic value of an individual regardless of his/her abilities to communicate and engage with others (see also Chapters 10 and

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15, this volume). The philosophy of person-centred care offers a way to continue to affirm life even as a person with dementia approaches death (Downs, Small & Froggatt, 2006). Psychologists have a tradition of working with people with impairments, be they intellectual or neurological, to maximize functioning and quality of life, and are therefore in a position to engage with the living and dying that people with dementia experience during their illness.

Application Early in the Course of the Illness The palliative care approach recognizes that people’s needs are best addressed early on in the illness, not just when an individual is dying. It is difficult to form an accurate prognosis for a person with dementia (Volicer et al. 1993). Similarly, it can be hard to recognize the subtle changes in physical and mental functioning that mark a shift in a person’s condition that brings them closer to death. For people with dementia, the recognition of these changes may be at too late a point to allow them an opportunity to address the consequences of these changes for their future. Consequently, it is even more important to give people with dementia the opportunity to address their own mortality, as far as they would like to, early on in the illness course – possibly even at the time of diagnosis (Hughes, Robinson & Volicer, 2005). Opportunities for discussion and attendance to issues raised by an individual’s dying need to use current structures of service provision. For example, there may be a role for memory clinics to provide a place where this can be undertaken. Both health and clinical psychologists have a role to play in helping people adapt to and cope with changed circumstances including the loss of function and ability through psychotherapeutic work or rehabilitative approaches (see also Chapters 30 and 31, this volume).

PAIN AND SYMPTOM MANAGEMENT Whilst it is proposed that the symptom need of people dying with dementia is of a level comparable to people with cancer (McCarthy, Addington-Hall & Altmann, 1997), the focus of symptom management may be different. There are certainly physical symptoms that many conditions will share – for example pain, urinary incontinence, constipation, loss of appetite, shortness of breath. For people with dementia, there may also be behavioural problems that require consideration (Hughes, Robinson & Volicer, 2005). The communication challenges present in work with people with dementia raise issues about the process of assessment, measurement and management of symptoms and problems. Many of the tools developed in palliative care to assess symptom levels are based on the assumption that the person being assessed can articulate his/her needs. These tools may be inappropriate for people with more severe dementia. With respect to pain, new tools are being developed for this particular population (Abbey et al. 2004). However, more needs to be done with regard to many other physical symptoms. Even with appropriate tools to assist in symptom management, professional staff require appropriate knowledge and confidence to use these tools and manage the situation. The usefulness of these tools is also reliant on the correct attribution being made about the behaviour. For example, if carers perceive screaming to be attributed to dementia, they may not recognize this as an expression of physical pain. Psychologists

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with their tradition in ethology and behavioural observation have much to offer in the development of assessment scales for a range of symptoms.

Integration of Psychological and Spiritual Care Palliative care recognizes that psychological and spiritual care is required alongside physical care. Person-centred care (Kitwood 1997) is a philosophy of care that explicitly seeks to address, in an integrated way, the different physical, psychological, social and spiritual aspects of a person’s life. A continuation of these principles around end-of-life issues offers a way to bring together palliative and dementia care (Downs, Small & Froggatt, 2006). In the context of someone dying with dementia, whether experiencing mild dementia and dying of another medical condition or dying of the consequences of severe dementia, this would require attention to processes of communication to address psychosocial and spiritual issues. There may be a need to go beyond conventional forms of verbal communication and draw on modalities of music, art and touch (Downs, Small & Froggatt, 2006). Spiritual support that has rituals and symbols to draw on from the different faiths may also be integrated into care for people who engage nonverbally (Thompson O’Maille & Kasayka, 2005). The skills clinical psychologists have in learning how to find out what the other person is feeling and experiencing are much needed within this aspect of care.

A Support System for Patients and their Families The recognition of the needs of the person with the illness and the family has always been an important aspect of palliative care. There are strong similarities in dementia care, where much investment has been made into supporting family carers (see Chapters 16 and 32, this volume, and Marriott 2003), particularly as they care for their relative in their own homes. When a person with dementia declines and requires a greater level of care than a family carer can provide, or family carers become unwell themselves, then there may be a move to a new place of care, such as a facility that provides long-term care, or even an acute hospital. With these transitions of place come new needs for both the person with dementia (Reed et al. 2003) and the family carers who will have to address changes in caring role (Davies & Nolan 2003) or make sense of the deterioration of their relative (Albinsson & Strang 2003a,b). Given the ongoing losses family members face through the course of the dementia illness, formal carers who support family members may need to address such losses before and after the person with dementia has died. Family systems approaches, familiar to most psychologists, could be usefully applied in this long-term work with families during the course of the illness and post-bereavement (see also Chapter 5, this volume, for a full discussion of death, dying and bereavement).

MODELS OF SERVICE PROVISION The provision of palliative care for people with dementia has been addressed to date through the establishment of a spectrum of services. Developments in service provision have tended to occur mainly outside mainstream specialist palliative care services. These new models

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range from specialist units specifically for people with severe dementia through to the promotion of a palliative care approach to be provided wherever the person with dementia resides.

Specialist Palliative Care Units for People with Dementia Specialist developments have been undertaken in the US since the 1980s. These are either programmes of palliative care used in established care settings (Ahronheim, Morrison & Morris, 2000; Volicer et al., 1994), or a stand-alone hospice unit in a long term care facility (Kovach, 1997; Wilson, Kovach & Stearns, 1996). Whilst the aim is to ensure the provision of comfort care, these services can go beyond just physical care and also address issues of personhood and meaning.

Development of General Palliative Care for People with Dementia The development of general palliative care for people with dementia is supported by a range of initiatives to help prepare generic practitioners for meeting the needs of people dying with dementia. These include the promotion of guidelines (Lloyd-Williams & Payne, 2002), and the provision of educational programmes (Kovach, 1997). Some guidelines are linked to specific care settings, for example residential aged care facilities in Australia (Australian Government Department of Health and Aging, 2004), or long-stay hospital settings in the UK (Lloyd-Williams & Payne, 2002). The focus of most of these initiatives has been on the care of people dying with advanced or end-stage dementia. More recently, though, a liaison team has been established in the US in primary care services for older people. This aims to support people with dementia much earlier in their illness through to their death (Shega et al. 2003), with an emphasis on end-of-life care. A call for a new service has been made in the UK (Hughes, Robinson & Volicer, 2005). This would see the establishment of liaison teams, working out of continuing care units for people with dementia, which seek to meet the range of needs at the end-of-life for people with dementia across care settings. Little attention has been paid to the needs of people with dementia who die with dementia alongside other conditions and the implications for professionals who care for these individuals in other more general care situations, such as acute hospitals, where they have neither the expertise in dementia care or palliative care (Health Advisory Service, 1998). The evidence for the impact of initiatives that promote a palliative care approach as described earlier in this chapter is also limited (Sampson et al. 2005). This lack of evidence provides an impetus for further, more rigorous, empirical studies to be undertaken to ascertain the impact of these care models.

IMPLICATIONS FOR DEMENTIA CARE PRACTICE From this account of palliative care for people with dementia, three specific implications for practitioners, including clinical psychologists, are identified that could be threaded through all care work with people with dementia and their families.

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Attention to Dying With the recognition of the inevitability of death comes the responsibility to help ensure that the implications of this death are considered at an appropriate time for individuals with dementia and their family carers, if they so wish. This may be at diagnosis, or later, but the issues may be revisited throughout the course of the illness.

Attention to Decision Making The very nature of the dementia illness journey challenges the principle in palliative care for the person with the illness to be at the centre of all care, in its planning and enactment. Consequently decision making and what this represents in terms of requirements for information and communication, needs to be addressed from diagnosis until the death of the person with dementia and then into the bereavement period for family carers. Decisions will need to be made about the timing of the shift from active treatment and rehabilitation to more palliative care. Attention to nonverbal cues needs to be heightened to ensure that communication with the person with dementia continues when verbal communication is either difficult or no longer possible (Baldwin et al., 2005).

Attention to Self The focus of this chapter has been on care for people with dementia and their families. Given the important and difficult nature of this work, staff who work with people with dementia in any care setting need appropriate preparation and support. When considering the impact of caring for people who are dying further needs for support can be identified. This may take the form of education to improve knowledge (Chang et al. 2005), but broader psychological and/or spiritual support may also be required (Kearney 2000). This can be provided individually through supervision or in support groups. Clinical psychologists may be well placed to facilitate some of this work.

CONCLUSIONS Palliative care as a speciality has a wealth of experience and knowledge to draw upon which is relevant and appropriate for people dying with dementia. However, this knowledge needs to be integrated with the best practices of dementia care so that people with dementia, in any care setting, along with their family carers, are well supported in the living and dying they experience. Clinical psychologists have an important role to play throughout this time in addressing the psychological needs that arise for people, people with dementia, their families and the staff who care for them.

ACKNOWLEDGEMENTS Thanks to participants at the public lecture given by M. Downs in the Department of Psychology, University of Southampton for their contributions to this chapter.

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REFERENCES Abbey J., Piller, N., de Bellis, A. et al. (2004) The Abbey Pain Scale: a 1-minute numerical indicator for people with end-stage dementia. International Journal of Palliative Nursing, 10(1), 6–13. Addington-Hall, J. (1998) Reaching Out: Specialist Palliative Care for Adults with Non-Malignant Disease. London, National Council for Hospices and Specialist Palliative Care Services and Scottish Partnership Agency for Palliative and Cancer Care. Ahronheim J., Morrison, S. & Morris, J. (2000) Palliative care in advanced dementia: a randomized controlled trial and descriptive analysis. Journal of Palliative Medicine, 3, 265–73. Albinsson, L. & Strang, P. (2003a) Differences in supporting families of dementia patients and cancer patients: a palliative perspective. Palliative Medicine, 17, 359–67. Albinsson L. & Strang, P. (2003b) Existential concerns of families of late-stage dementia patients: Questions of freedom, choices, isolation, death, and meaning. Journal of Palliative Medicine, 6(2), 225–35. Australian Government Department of Health and Aging (2004) Guidelines for a Palliatve Approach in Residential Aged Care. Rural Health and Palliative Care Branch, Australian Government Department of Health and Aging, Canberra. Baldwin, C., Jacoby, R., Hughes, J.C. et al. (2005) Making Difficult Decisions. Alzheimer’s Society, London. Caron, C., Griffith, J. & Arcand, M. (2005) End-of-life decision making in dementia. Dementia, 4(1), 113–36. Chang, E., Hancock, K., Harrison, K. et al. (2005) Palliative care for end-stage dementia: a discussion of the implications for education of health care professionals. Nurse Education Today, 25, 326–32. Cox, S. & Cook, A. (2002) Caring for people with dementia at the end of life, in Palliative Care for Older People in Care Homes (eds J. Hockley & D. Clark). Buckingham, Open University Press, pp. 86–103. Davies, E. & Higginson, I. Better Palliative Care for Older People. World Health Organisation, Copenhagen. Davies, S. & Nolan, M. (2003) ‘Making the best of things’: relatives’ experiences of decisions about care-home entry. Ageing and Society, 23, 429–50. Diwan, S., Hougham, G. & Sachs, G. (2004) Strain experienced by caregivers of dementia patients receiving palliative care: findings from the Palliative Excellence in Alzheimer Care Efforts (PEACE) Program. Journal of Palliative Medicine, 7(6), 797–807. Downs, M., Small, N. & Froggatt, N. (2006) Person-centred care for people with severe dementia, in Severe Dementia (eds A. Burns & B. Winblad). John Wiley & Sons, Chichester, pp. 193–204. Health Advisory Service (1998) Not Because They Are Old: An Independent Inquiry Into the Care of Older People in Acute Settings in General Hospitals. Brighton, Pavilion Publishing. Hofman, A., Rocca, W., Brayne, C. et al. (1991) The prevalence of dementia in Europe: a collaborative study of 1980-1990 findings. Eurodem Prevalence Research Group. International Journal of Epidemiology, 20, 736–48. Hughes, J. (Ed) (2006) Palliative Care in Severe Dementia. Quay Books, London. Hughes, J., Robinson, L. & Volicer, L. (2005) Specialist palliative care in dementia. British Medical Journal, 330, 57–8. Kearney, M. (2000) A Place of Healing Working with Suffering in Living and Dying. Oxford University Press, Oxford. Kitwood, T. (1997) Dementia Reconsidered. Open University Press, Buckingham. Kovach, C. (1997) Maintaining personhood: philosophy, goals, program development and staff education, in Late-Stage Dementia Care A Basic Guide (ed. C. Kovach). Taylor & Francis, Washington DC, pp. 25–43. Lloyd-Williams, M. (1996) An audit of palliative care in dementia. European Journal of Cancer Care, 5, 53–5. Lloyd-Williams, M. & Payne, S. (2002) Can multidisciplinary guidelines improve the palliation of symptoms in the terminal phase of dementia? International Journal of Palliative Nursing, 8(8), 370–75.

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Marriott, A. (2003) Helping families cope with dementia, in Dementia Care (eds T. Adams & J. Manthorpe). London, Arnold, pp. 187–201. Matthews, F. & Dening, T. (2002) Prevalence of dementia in institutional care. The Lancet, 360, 225–6. McCarthy, M., Addington-Hall, J. & Altmann, D. (1997) The experience of dying with dementia: a retrospective study. International Journal of Geriatric Psychiatry, 12, 404–9. Mellor P.A. & Shilling, C. (1993) Modernity, self-identity and the sequestration of death. Sociology, 27(3), 411–31. Mitchell, S., Kiely, D. & Hamel, M. (2004) Dying with advanced dementia in the nursing home. Archives of Internal Medicine, 164, 321–6. National Council for Palliative Care (2006) Exploring Palliative Care for People with Dementia. A Discussion Document. London, National Council for Palliative Care. National Institute for Clinical Excellence (2004) Guidance on Cancer Services. Improving Supportive and Palliative Care for People with Cancer. London, National Institute for Clinical Excellence. Reed, J., Cook, G., Sullivan, A. & Burridge, C. (2003) Making a move: care-home residents’ experiences of relocation. Ageing and Society, 23, 225–41. Sampson, E., Ritchie, C., Lai, R. et al. (2005) A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. International Psychogeriatrics 17(1), 31–40. Sepulveda C., Marlin, A., Yoshida, T. & Ullrich, A. (2002) Palliative care: the World Health Organisation’s global perspective. Journal of Pain and Symptom Management, 24(2), 91–6. Seymour, J., Witherspoon, R., Gott, M. et al. (2005) End of Life Care: Promoting Comfort, Choice and Well Being for Older People at the End of their Lives. The Policy Press with Help the Aged, Bristol. Shega J., Levin, A., Hougham, G, Cox-Hayley, D. et al. (2003) Palliative Excellence in Alzheimer Care Efforts (PEACE): a program description. Journal of Palliative Medicine, 6(2), 315–20. Small, N., Downs, M. & Froggatt, K. (2006) Improving end-of-life care for people with dementia – the benefits of combining UK approaches to palliative care and dementia care, in Care-Giving in Dementia. Research and Application, Volume 4 (eds B. Miesen & G.M.M. Jones). Routledge, London. Small, N., Froggatt, K. & Downs, M. (in press) Living and Dying with Dementia – Dialogues about Palliative Care. Oxford University Press, Oxford. Thompson O’Maille, T. & Kasayka, R. (2005) Touching the spirit at the end of life. Alzheimer’s Care Quarterly, 6(1), 62–70. Volicer, L. (1986) Need for hospice approach to treatment of patients with advanced Alzheimer’s disease. Journal of the American Geriatrics Society, 41(5), 535–40. Volicer, L., Collard, A., Hurley, A. et al. (1994) Impact of special care unit for patients with advanced Alzheimers-disease on patients’ discomfort and costs. Journal of the American Geriatrics Society, 42(6), 597–603. Volicer B.J., Hurley, A., Fabiszewski, K.J. et al. (1993) Predicting short-term survival for patients with advanced Alzheimer’s disease. Journal of the American Geriatric Society, 41(5), 535–40. Wilson, S.A., Kovach, C.R. & Stearns, S.A. (1996) Hospice concepts in the care for end-stage dementia. Geriatric Nursing, 17, 6–10.

PART FOUR

Assessment

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Neuropsychological assessment of the older person Linda Clare University of Wales Bangor, Bangor, UK

This chapter will begin by exploring how neuropsychological principles can be combined with clinical skills in working with older people in order to plan and conduct an effective neuropsychological assessment. After considering the aims and context of neuropsychological assessment of the older person, the first part of the chapter will follow the sequence of steps involved in planning and conducting a neuropsychological assessment and communicating the findings, outlining the approaches that can be taken and describing current perspectives on good practice. Following on from this, the second half of the chapter will consider how the findings from a neuropsychological assessment can help to answer some frequently encountered referral questions. Discussion will focus in particular on distinguishing dementia from normal ageing and depression, and on distinguishing different sub-types of dementia.

PLANNING AND CONDUCTING A NEUROPSYCHOLOGICAL ASSESSMENT Neuropsychological assessment is an hypothesis-testing, problem-solving process. Starting from the referral question, the assessment will aim to contribute information that can help to answer the following questions:

r Is there impairment and if so, in which cognitive functions? r What are the person’s strengths and what functions are unaffected? r What does this pattern of strengths and impairments suggest about the nature of any problems? Is it consistent with a particular syndrome or diagnosis? What does it allow us to rule out, in terms of explanation? r What are the practical implications of the results for the person’s everyday life? r What do the results tell us about how the person could best be helped? Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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This process proceeds through the stages of gathering information, planning and conducting the assessment, interpreting the findings and placing these in context, and identifying what further action should be taken. Here I will consider each of these stages in turn. First, however, it is important to note that a neuropsychological assessment, if undertaken without sufficient care and consideration, can be a rather aversive experience for the older person. The following are comments people made about their Memory Clinic neuropsychology assessment when interviewed for one recent qualitative study (Clare, 2003): ‘You had to fail miserably on the answers.’ ‘It highlighted to me that the problem is still there.’ ‘I hated it – I just felt I couldn’t do it.’ Nevertheless, there are many circumstances in which a thorough neuropsychological assessment contributes essential information that can help to plan further care and support. I will be suggesting here that if an assessment is planned appropriately and conducted sensitively, it can be an acceptable and perhaps even positive experience. The essential clinical skills of the neuropsychologist are indispensable in engaging, encouraging and supporting the older person, helping to manage anxiety and distress, and facilitating full participation in the assessment process. Many people are very grateful for the time and trouble taken over a good neuropsychological assessment and some even feel the assessment in itself has been helpful to them. One woman wrote following an assessment of her husband, who was very impaired by semantic dementia, to say: ‘He enjoyed it. He came out feeling that he could still do something after all, instead of being completely useless. He talked about it several times afterwards.’ It is possible, within the context of a neuropsychological assessment, for people to feel they have been listened to and understood and to have a sense that they have been able to show their strengths alongside any problems. This should be our aim for all neuropsychological assessments of older people, and should serve as a guiding principle at each stage of the process.

Information Gathering Most older people referred for assessment will present a complex picture and interpretation of assessment results is rarely a fairly straightforward process. Neuropsychological assessment of the older person, therefore, is not done in isolation. It needs to form part of a comprehensive, multidisciplinary assessment, as for example is usually the case when people attend a memory clinic. It is essential to gather information from a range of source, as summarized in Figure 22.1. Information should be obtained, wherever possible, from someone who knows the person well, such as a partner or relative, as well as from any other professionals involved in the person’s care, and from medical records. The person referred and the informant should be seen separately as well as together, to ensure that each has the opportunity to present his/her perspective, but this needs to be handled sensitively. Other information that will be needed includes:

r information about the person’s past experiences, education and occupation; r medical history;

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Response to assessment Factors affecting test performance

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Functional assessment; other measures

TEST RESULTS

Psychological and social aspects

History

Informant perspective Medical tests, scans etc

Findings and recommendations

Figure 22.1 Neuropsychological assessment requires information from a range of sources.

r assessment of mood and wellbeing (see Chapters 6 and 24, this volume, for a discussion of the assessment of mood and wellbeing);

r assessment of functional ability – while cognitive impairment is related to functional

r r r r

ability to some degree, it does not fully predict functional status, and ability to undertake activities of daily living needs to be assessed (see Chapter 23, this volume, for a discussion of functional assessment); assessment of social and environmental factors – a home visit can be very useful; details of medication use; medical test results (for instance, to rule out other physical causes for observed cognitive impairment, such as heart disease, infection or vitamin deficiency); scan results and perhaps EEG results.

Over and above such factors, it is also necessary to consider two very important issues that may affect the expectations we hold about how clients should perform. Firstly, it is important to have a clear understanding of the impact of ‘normal ageing’ on cognitive functioning and to remain alert to possible cohort effects (we will return to this point later; for a full discussion of this topic see Chapter 3, this volume). Secondly, it is important to be aware of base rates – the incidence and prevalence of a given condition or problem in the population as a whole – when commenting on whether test results indicate particular diagnostic profiles (Chapter 11, this volume, provides more detailed information on prevalence of the most frequently encountered neurodegenerative conditions).

Planning the Assessment One important aspect of planning a neuropsychological assessment involves creating the right conditions that will enable the person to feel at ease and perform at his/her optimal level. Factors that affect neuropsychological assessment of the older person include those related to the person, to the testing environment, and to the tests themselves. While to some degree the impact of such factors can be minimized through careful planning and tailoring of the assessment, their effects cannot always be eliminated. In such cases, their possible influence should be noted and borne in mind when interpreting results. Person-related factors that can influence results include:

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r physical health problems; r drug effects; r iatrogenic effects of treatment; r pain; r restricted mobility; r sensory loss; r inadequacy of compensatory aids (for example, glasses or hearing aids); r fatigue; r mental health problems; r emotional reactions to assessment. Factors related to the testing environment include:

r long journey to hospital or clinic; r unavailability of refreshments; r long or difficult route to test room; r distractions or interruptions; r noise; r temperature too hot or too cold; r inadequate lighting; r uncomfortable seating; r toilets not clearly signed or not easily accessible. Factors related to the tests themselves are also important. For any given test it is important to consider aspects such as:

r availability of norms for older people; r requirements for mobility and dexterity; r suitability of test instructions/demands; r disadvantage resulting from biases in test content; r representativeness of test norms with regard to the person being assessed. It is important, therefore, to think about how to create a situation that will minimize the likely impact of all these factors, and provides a positive and empowering experience for the person. Possible ways of achieving this include:

r selecting an appropriate location and setting; r allowing enough time and pacing the session(s) to suit the person; r offering clear explanations; r inviting the expression of preferences regarding feedback; r careful selection of suitable tests; r sequencing tests to intersperse more challenging tasks with easier ones; r remaining flexible; r offering feedback and inviting the person to ask questions. As noted above, it will be important to take great care over the process of assessment. It is essential to:

r Explain clearly the purpose and nature of the assessment. People may make comments that are quite defensive or even hostile but this is usually a way of masking vulnerable

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r r r r r

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or anxious feelings and it is therefore crucial to respond accordingly. Validating feelings and openly discussing the difficulties provides a basis for a more collaborative approach and a more positive experience of assessment. Identify at the outset what kind of feedback the person would like to receive following the assessment, and who the person would wish to be present at any feedback session. Structure the assessment carefully, and remain flexible. Tests that are likely to be more demanding can be interspersed with ones on which the person is more likely to do well. Where fatigue is an issue, assessment might be spread over more than one session. Be suitably cautious when interpreting results and reporting back. Integrate information from other sources with the neuropsychological test results in reaching conclusions. Be prepared to give feedback, verbal and written. It is usually most helpful to do this in terms of strengths and difficulties and to relate it to practical aspects of daily life rather than just referring to cognitive functions.

Selecting and Using Appropriate Tests Various kinds of measures are available for psychologists to use. These can be divided into screening tests (sometimes described as ‘cognitive’ tests), neuropsychological tests, and noncognitive measures. Screening measures will not normally form part of a neuropsychological assessment, but details of performance on these may be included in referral information or provided by other team members, so it is important for clinical psychologists to be familiar with these.

Screening measures Screening tests are often used to provide an indication of whether there is cognitive impairment and can be very useful provided their limitations are clearly understood. Although sometimes used by psychologists, they are not a substitute for neuropsychological assessment. Most commonly, however, screening will be carried out by other health professionals and used as a basis for deciding whether to refer for neuropsychological assessment. Probably the most common screening measure used in this way is the Mini-Mental State Examination (MMSE) (Folstein, Folstein & McHugh, 1975). The main advantage of the MMSE is that it provides a quick and simple means of quantifying level of cognitive functioning. However, the MMSE has a number of important limitations. The content lacks a clear rationale in terms of addressing specific areas of cognitive functioning, the test is sometimes considered rather patronizing and demeaning to the older person and it tends to disadvantage people with limited formal education and those from minority ethnic groups. A low score (24/30 or below) is a fairly good indicator of cognitive impairment but a higher score does not necessarily mean there is no impairment – well educated, able people in the early stages of dementia can score full marks on the MMSE but nevertheless have severe problems in episodic memory. Therefore, MMSE scores should be treated with caution, especially as application is variable, due to nonstandardized administration and the use of varying cut-offs to indicate impairment. A standardized version of the MMSE (S-MMSE)

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(Molloy, Alemayehu & Roberts, 1991) that gives clear instructions about how to administer each item is available, which could help to counter this difficulty. The MMSE is very susceptible to practice effects if repeated too often or within a short period of time. Despite this, the MMSE is often administered repeatedly at fairly short intervals. This results in an artificial inflation of scores. Indeed, it has recently been suggested that the MMSE should not be used at intervals less than three years apart. This question of the effects of repeated administration is particularly important where the MMSE is used as an outcome measure, for example in drug trials. Participants with early dementia can be so well schooled that they know the questions more or less off by heart. It should also be remembered that given the constraints of test-retest reliability, a change of at least four points in a given direction is required before one can state confidently that there has been an improvement or a decline (Clarke et al., 1999). A 1-point improvement in MMSE score does not, therefore, serve as an indicator of a positive response to intervention. A more sophisticated screening measure is the CAMCOG, which is a component of the CAMDEX system for diagnosis of dementia in older people (Roth et al., 1999). The CAMCOG incorporates the MMSE items into a more extensive cognitive screening assessment that does attempt to sample a range of neuropsychological functions. This therefore serves as a useful screening measure, providing an initial indication not just of the presence or absence of cognitive impairment but also of those areas of cognitive function which might be most relevant to consider further. More recently developed, and growing in popularity, is the Addenbrooke’s Cognitive Examination (ACE) (Mathuranath et al., 2000), which is similar in format and scope to the CAMCOG. Another screening tool frequently used by psychologists is the Middlesex Elderly Assessment of Mental State (MEAMS) (Golding, 1989).

Neuropsychological tests Many of the tests that neuropsychologists might use with younger people may also be used, in whole or in part, to assess older people who are within the age range covered by the test norms. Special consideration should, however, be given to the suitability of assessment measures for frail older people. Table 22.1 provides suggestions for tests that could be used to assess various cognitive functions in older people. As well as tests suitable for use in general neuropsychological assessment, the list includes some tests that can be used to explore further and more specific hypotheses within a cognitive neuropsychological framework. Further details of individual tests can be found in Strauss, Sherman and Spreen (2006) or Lezak et al. (2004). A comprehensive assessment, as shown in Figure 22.2, will cover the following domains of cognitive functioning:

r general cognitive functioning (IQ) – both current and estimated prior IQ; r long-term memory – episodic, semantic, autobiographical and prospective. Within this it may be appropriate to consider memory functions (learning, forgetting), modalities (visual, verbal, sensory), time periods (recent, remote), relation to onset of problems (anterograde, retrograde) and testing methods (recall versus recognition, immediate versus delayed recall).

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Table 22.1 Neuropsychological assessment of the older person: possible tests Domain

Tests

Previous IQ

NART or WTAR; SCOLP Spot-the-Word Test

Reading ability

Schonell Graded Word Reading Test

Current IQ

WAIS-III short-form verbal or full-scale IQ; WASI; Ravens Coloured/ Standard Progressive Matrices

Attention

Letter cancellation task; Test of Everyday Attention subtests; Behavioural Inattention Test (BIT) if neglect is suspected

Working memory

WAIS-III digit span (auditory-verbal); WMS-III visual span (visual); Corsi Blocks (visual)

Executive function

Trail-making Test; Controlled Oral Word Association Test (COWA) – letter fluency (FAS); Category fluency; Modified Wisconsin Card Sorting Test (WCST); Stroop Test; Weigl sorting task; subtests from the Behavioural Assessment of the Dysexecutive Syndrome (BADS)

Visuospatial perception

Visual Object and Space Perception Battery (VOSP); Benton Judgment of Line Orientation; Benton Unfamiliar Face Matching (facial perception)

Semantic memory

Pyramids and Palm Trees; Graded Naming Test (GNT); Famous faces and names

Long-term memory Recall, immediate and delayed

WMS-III logical memory (verbal); WMS-III visual reproduction (visual)

Recognition

Camden Memory Tests – words, faces, topographical scenes; Recognition Memory Test (RMT) – words, faces; Doors and People Test – doors, names

Prospective and everyday memory

Rivermead Behavioural Memory Test (RBMT) original or Extended version (RBMT-E); Cambridge Prospective Memory Test (CAMPROMPT)

Autobiographical memory Learning

Autobiographical Memory Interview (AMI)

Language comprehension

Naming from description; Token Test; Test for the Reception of Grammar (TROG); PALPA

Language expression

Graded Naming Test (GNT); COWA and category fluency; Boston Diagnostic Aphasia Examination; PALPA

Calculation

WAIS-III arithmetic

Praxis

WAIS-III or WASI block design

Functioning in moderate/severe dementia

Rivermead Behavioural Memory Test (RBMT); Severe Impairment Battery (SIB)

WMS-III Paired Associate Learning; California Verbal Learning Test (CVLT); Rey Auditory-Verbal Learning Test; Doors and People Test – people, shapes (also provides forgetting score)

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Prior (estimate)

Current

GENERAL COGNITIVE FUNCTIONING

MEMORY long-term

PERCEPTION

EXECUTIVE FUNCTION

LANGUAGE

Episodic

Object

Working memory

Receptive

Semantic

Spatial

Attention

Expressive

Autobiographical

Executive

Prospective

Figure 22.2 Domains and functions to consider in a neuropsychological assessment.

r Working memory, attention and executive function. r Perception – object perception, spatial perception. r Language – expressive (reading, naming) and receptive (comprehension). Assessment may, of course, be more focused where specific hypotheses are being explored. It must be remembered, however, that although cognitive functions are often described as separate entities, in fact they are interrelated and performance on tests usually requires the involvement of more than one aspect of functioning. For example, a memory test assessing verbal recall will also require language skills and a memory test assessing visual recall will require perceptual and motor skills. It can be helpful to think of this in terms of the stage of information processing at which difficulties arise. For example, difficulty recalling names might arise for various reasons, as shown in Figure 22.3. In order to recall a name in response to a familiar face it is first necessary to see the face clearly and to direct attention towards it. The face must then be processed to construct a perceptual representation, which is matched to a representation stored in memory. Memory must then be searched for a stored representation of the relevant name, so that the face can be associated with the name and perhaps also with stored semantic information about the person concerned. The name must be processed ready for output through the language system and can finally be spoken out loud. Thus, difficulties could be due to impairments in vision, attention, perception, or language, or in executive functions involved in searching and retrieving stored memories, as well as in memory itself. Therefore, it is usually important to consider information from a range of tests in order to establish where any observed impairments lie.

Noncognitive measures It is useful to consider including some noncognitive measures in the neuropsychological assessment, unless of course this part of the assessment is being undertaken by other team

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VISION Seeing the face

MATCHING to stored representation of face

PERCEPTION Constructing representation of face

ASSOCIATING with stored memory of name

PROCESSING the name ready for output SPEAKING the name

Figure 22.3 Stages in cognitive processing of a face-name association.

members. These might include measures of mood or of ability in activities of daily living (see Chapters 6, 24 and 23 in this volume). Examples of possible measures include the Geriatric Depression Scale (Yesavage et al., 1983) or Hospital Anxiety and Depression Scale (Snaith & Zigmond, 1994). If gathering information from informants who are in the role of caregivers, you may also want to assess whether your informants are experiencing high levels of caregiver burden or depression as this is likely to affect their evaluation of the current situation (see Chapters 16 and 32, this volume, for a full discussion of issues relating to caregivers). Several useful scales can be found in Burns, Lawlor and Craig (2003). See also the review of measures provided by Sperlinger et al. (2005).

Interpretation and Decision-making The neuropsychological assessment will provide results from an appropriate range of tests, plus a note of response to assessment and factors influencing test performance. In making sense of the findings, the aim is to (a) rule out incorrect explanations, and (b) provide converging evidence for the best-fitting explanation. Figure 22.4 offers a possible structure for the process of interpreting results. Firstly, results from different tasks and subtests can be grouped by cognitive domain ready for interpretation. Inspection of scores within each domain will then indicate whether they demonstrate impairment or possible impairment. The presence of impairment may be determined in various ways according to the conventions of the tests used. Individuals can be considered as falling into the impaired range if they achieve:

r Scores falling more than two standard deviations below the age-specific mean score in the standardization sample.

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TEST SCORES

Overall decline in cognitive functioning? YES

Impairment in specific domains or processes?

NO

YES

NO

Significant depression or mental health or other problem that could account for poor performance? YES Appropriate intervention? Reassess once treated.

If no objective impairments, why the worry about memory?

NO What does the pattern suggest? Implications for daily life? Interventions? Need to review/reassess?

Need for intervention or referral? Need to reassess?

Figure 22.4 A template for interpreting neuropsychological assessment results.

r Scores falling at or below the fifth percentile for the standardization sample of the same age group.

r Scores falling at or below a designated cut-off score said to discriminate impaired from normal performance for the given age group.

r Scores falling below the level of any of the ‘normal’ standardization sample. However, impairment could also be indicated by scores that, although not in the above categories, are markedly discrepant from what would be expected for the individual in view of previous ability and scores on other tests or subtests. Equally, scores that can be classed as reflecting impairment nevertheless need to be considered in the context of the other available information, since there may be extraneous factors that affected the person’s scores, and in some cases there may have been pre-existing or perhaps lifelong disabilities. Having inspected the test scores, the following questions can be addressed:

r Is there an overall decline in functioning, and/or a decline or impairment in specific domains? If no, why is there a worry about memory and what needs to be done? If yes, is there significant depression or other mental health problem that could account for it? If so, what intervention is required? r If there is no significant depression, or if psychological factors cannot account for the observed performance, what does the pattern of results suggest? How does it relate to patterns identified in various diagnostic criteria? How does it relate to the history and other test results? r What possible conclusions can be drawn, and what further actions are indicated? At this stage the findings can be integrated with the information gained from other sources, or used to contribute to a multidisciplinary team discussion, before deciding what information and feedback to give to the person, the family and the referrer.

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When providing feedback for the person who has been assessed, it is usually most helpful to do this in terms of strengths and difficulties and to relate it to practical aspects of daily life rather than just referring to cognitive functions. For example, rather than referring to ‘problems with prospective memory’ a more accessible approach could refer to difficulties in remembering things that have to be done, such as keeping an appointment, and how this may mean that extra reminders are needed. At the same time, it is almost always the case that some other areas of memory are still working well, and it is helpful to emphasize this, drawing on suitable examples that reflect the person’s strengths. Finally, it is also helpful to offer some constructive suggestions or recommendations that can assist the person and family.

Breaking bad news Direct feedback and discussion with the person who has been assessed is an important part of the assessment process, as long as the individual is willing to engage in this. If the assessment showed no problems with cognitive functioning, it is important to talk this through with the person, try to establish the reason for the concerns that had arisen, and see if any worries are now resolved. If the assessment identified some problems, it will be necessary to provide feedback on these, discuss the implications, and outline what the options are for further action. One of the most likely scenarios in this category is where a diagnosis of dementia is made. If the outcome of the assessment is a diagnosis of dementia, this will need to be explained to the person, and psychologists often play a part in conveying the diagnosis and providing support to the person and family as they try to adjust to this.

Diagnostic disclosure in dementia At present, communication of the diagnosis by psychiatrists and other medical doctors is variable (Bamford et al., 2004). Carers are generally told the diagnosis (Rice & Warner 1994) and this is particularly true for younger carers (Heal & Husband 1997). However, relatively few carers have the prognosis discussed with them. The person with dementia is much less likely to be told. Rice and Warner (1994) found that about 25% of psychiatrists ‘rarely’ tell, and nearly 40% only ‘sometimes’ tell, the diagnosis to people with mild dementia. Still fewer give prognostic information. This means that in practice it is often be left to the carer to decide whether to tell, but it is rare for carers to have any opportunity for discussion of what or how to tell. Carers generally say that if they themselves were in the situation of being a patient with dementia, they would want to be told (71%) but most (83%) feel their own relative should not be told for fear of causing distress (Maguire et al., 1996). In contrast, the majority of people with dementia, when asked at the start of their assessment, say they want to be told the outcome. Therefore, it can be difficult to balance the needs and preferences of patients and carers. Reasons sometimes cited in support of not disclosing a dementia diagnosis include the following:

r uncertainty over the accuracy of diagnosis; r difficulty of giving precise information about prognosis;

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r possibility of causing distress or harm; r suicide risk; r inability to offer a cure; r stigma resulting from assigning a label of dementia or Alzheimer’s disease; r belief that the person either will not remember or will not understand. However, these may be counterbalanced by a number of reasons in favour of communicating the diagnosis in the early stages. These include:

r belief that the person has a right to know; r supporting the principle of individual autonomy; r offering any kind of intervention requires informed consent; r possibility of offering medication; r provides a chance for the person and family to plan for the future; r allows the possibility of trying to come to terms, adjust and cope; r likelihood of reducing stigma through open discussion; r likelihood of reducing anxiety by providing an explanation; r likelihood that the person may well suspect anyway; r removing the burden of deciding what to disclose from family members. It is probable that there is no one single correct approach, and therefore discussion of diagnosis should be ‘patient led’ and based on the individual situation (Bamford et al., 2004). It is important to start to prepare people for the possibility of this discussion from the time when they first attend for assessment. Steps that can be taken before and during assessment include:

r explaining clearly the reasons for the assessment and the possible outcomes; r discussing the implications of finding cognitive problems; r giving information in writing as well as verbally; r securing informed consent for the assessment; r establishing what kind of feedback individuals want and whether they want to be told of a diagnosis should one be established;

r establishing whether the person would like someone else, for example a family member, to be told, and how this should be done. Disclosure should not be a quick one-off event; instead, it should be seen as a process that may take some time. This may involve a series of meetings, rather than just one. During this process it is important to:

r respect the client’s wishes; r meet with the individual and/or family as appropriate; r listen to concerns and feelings; r consider carefully what terminology would be most helpful; r give explanations in writing as well as verbally; r offer ongoing support and a long-term commitment from the service, where possible. Discussing the diagnosis carries with it the responsibility to ensure the person and family are linked with appropriate support networks (Post & Whitehouse, 1995). Following

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diagnostic disclosure, it is important to provide, or arrange for, ongoing support and longterm input.

The Next Steps In reaching an opinion about the results of a neuropsychological assessment, it is important to think about what further information or advice might be necessary. If there is demonstrable cognitive impairment, this stage will include a consideration of what kinds of interventions or support may be helpful for the person and family. Support and intervention may be offered by the same service that has provided the assessment, but if not it is necessary to consider what other options may be available. Depending on the problems identified, appropriate information and advice should be provided for the person and/or a relative or carer following assessment. This might include, for example, self-help information on coping with memory problems, or suggestions of specific strategies that might help. If a diagnosis has been given, it is useful to offer details of a relevant national organization along with an information booklet or advice sheet. It is also worth considering linking the person or family with a local branch of a voluntary agency or self-help group. Where indicated, psychological interventions may be offered or recommended. Other practical considerations may also be important. One such consideration relates to driving. See McKenna (1998) and British Psychological Society (2001) for a very clear account of the way in which neuropsychological assessment may contribute to an evaluation of fitness to drive, and the constraints on drawing firm conclusions. Finding evidence of cognitive impairment, or assigning a diagnosis of dementia, does not inevitably mean that the person must cease driving at once. Many people with early stage dementia are able to continue to drive safely for a time. The decision to give up driving when the appropriate time comes, however, can be very difficult for all concerned, especially as driving can be highly symbolic of personal independence, and practical problems can result where access to suitable public transport is limited. In cases of doubt, specialist driving assessment centres offer driving assessments incorporating cognitive tasks, off-road assessment and road tests.

ANSWERING COMMON REFERRAL QUESTIONS In this section I will consider how a neuropsychological assessment can assist in answering frequently encountered referral questions relating to the detection of possible dementia. Making the diagnosis of dementia is reasonably straightforward in the moderate/severe stages, but distinguishing the early stages of dementia from ‘normal ageing’ or depression can be much more complex.

Distinguishing Dementia from ‘Normal’ Ageing The boundaries between dementia and normal forgetfulness seem to be fluid. It is unclear how the difference between dementia and normal ageing should be conceptualized.

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Epidemiologists argue for a continuum model, in which rate of change is the distinguishing factor (Huppert et al., 1994). A traditional medical approach, in contrast, is based on a disease model, which holds that qualitative changes distinguish dementia from normal ageing. Clearly, this is a somewhat grey area and it is important to understand what kinds of memory changes may be seen in the context of ‘normal’ ageing (see Chapter 3, this volume) before attempting to detect the presence of early-stage dementia. There is a great deal of variation in the impact of ageing on memory functioning within the general population, so it is hard to set out a general profile of cognitive ageing and this is compounded by cohort effects. A broad overview suggests that although memory functioning becomes less efficient from about 67 years onwards, there is no general decline in memory ability and no uniform decline across the range of different memory tasks. Memory functioning is relatively more affected in the very old, so that diagnostic criteria do not allow for a dementia diagnosis made after the age of 90. Specifically, the following observations can be made with regard to memory changes in ‘normal’ older people (Cohen, 1996; Chapter 3, this volume):

r working memory may be affected; r episodic memory is affected to a much greater degree than semantic or procedural memory;

r immediate recall is affected more than delayed recall; r recognition memory is not affected; r retrieval is slower and less efficient, with more rapid and extensive forgetting; r prospective memory remains as good as that of younger people if external aids and reminders can be used, but is poorer if no such aids are available;

r autobiographical memory does not show the stereotypical discrepancy between vivid memories of the distant past and hazy memories of more recent events; instead, memories across the lifespan show loss of detail and become more vague; r alterations in memory functioning can be offset by intelligence, expertise and use of compensatory strategies, enabling the person to cope well despite any changes. The area of uncertainty between ‘normal’ ageing and dementia has attracted a number of attempts to define diagnostic categories. Among the diagnostic labels suggested are:

r age-associated memory impairment; r mild cognitive impairment/decline; r benign senescent forgetfulness; r minimal/questionable dementia. These remain controversial and practice varies regarding their use, although use of the MCI category in particular is increasing (Petersen, 2004; Winblad et al., 2004). The category of AAMI, for example, would include large numbers of older people and it is questionable whether changes that are essentially normative should be labelled in this way. Of course, powerful interests such as the pharmaceutical industry might stand to benefit considerably from the use of such diagnostic labelling, since a diagnostic label implies a need for ‘treatment’ and creates a potential new market. As a general rule, the lower the score on cognitive tests, the more likely it is that the person has dementia. However, Storandt and Hill (1989) found that scores of patients with

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very mild Alzheimer’s overlapped considerably with those of both normal older people and people with mild Alzheimer’s. Furthermore, even where people do show some degree of memory impairment, progression to dementia is not inevitable. Bowen et al. (1997) reported that 48% of their sample of people with severe isolated memory loss went on to develop dementia. Reisberg et al. (1982) studied 106 persons whose test results indicated cognitive decline. They excluded anyone with head injury, stroke, TIA, physical illness or mental health problems. Of the remainder, 28 were rated as having mild/questionable dementia. These 28 people were followed up 3 years later, and it was found that 13 remained living at home, of whom eight scored the same as before and five showed further decline. The CERAD studies (Welsh et al., 1991, 1992) show that the best discriminator between dementia and normal ageing is performance on delayed recall tasks. A 10 word list presented in three learning trials and tested after a 5 to 8 minute delay correctly classified 94% of controls and 86% of patients with mild Alzheimer’s disease (AD) using a cutting score of two standard deviations below the control group mean. Performance on naming tests was found to be useful as an adjunctive measure. If patients have impairment in delayed recall and problems in naming or verbal fluency, this is a very strong indicator for dementia. Other studies have also emphasized the value of delayed recall. Tierney et al. (1996) found that delayed recall (as measured by the Rey AVLT) and attention (as measured by the WMS-R mental control subtest) were the best predictors of whether people with mild memory problems would go on to develop AD. For a comprehensive overview of the neuropsychological profile of AD, see Morris & Becker, 2004; see also Chapter 11, this volume).

Distinguishing between Dementia and Depression In assessing older people it is important to be alert to the possible presence of depression and the possible impact of depression on cognitive functioning (see also Chapter 6, this volume). Assessment often focuses on trying to determine whether difficulties result from depression or from dementia, or indeed whether they reflect an interaction between the two. Depression in older people often presents differently to depression in younger people, and can be harder to detect. Somatic and sleep-related symptoms are less helpful as indicators of depression in older people, since such changes are more widespread in this age group. Factors such as retirement, bereavement, health problems, pain, poor housing, financial difficulties and limited social support all contribute to depression, and these are important aspects of the lives of many older people. It is not the case that depression is much more widespread in older people, however. Prevalence rates have been estimated at 4.3% for severe depression and 13.5% for mild depression. Nevertheless, it is an important problem, as a substantial number of older people do not recover, and many others relapse. The effects of depression on cognitive functioning seem to be very variable. Some older people with depression show no cognitive impairment, while others perform poorly on cognitive tests. In general, the effects of depression on cognitive test performance are relatively small and may result more from a conservative response bias and a reluctance to guess for fear of being wrong than from inability to respond. Thus, response to assessment may be a key factor in alerting the clinician to the likelihood that problems result from

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depression rather than dementia. In one study, older people with depression differed from controls on only one task, letter cancellation (Feehan et al., 1993). The distinction between dementia and depression is not clear cut. There are a number of reasons for this:

r People who have depression appear to have a slightly increased risk of getting dementia (the risk for those with a previous history of depression is 9.5%, which is higher than for the general population). r People who have dementia may be depressed. Estimates for the proportion of people with dementia who are depressed vary between 11% and 86% in various studies. In general, full-blown depressive syndromes are not very common but depressive symptoms are widespread. Depression is a significant source of excess disability in dementia (Ross, Arnsberger & Fox, 1998). r People with depression, while not having dementia, may show cognitive impairments that prove not to be fully reversible once the depression is treated; these may be accompanied by some structural changes in the brain. Thus, the conventional distinction between ‘organic’ and ‘functional’ problems would appear to be inappropriate. r Depressive symptoms could represent a prodrome of dementia. Christensen et al. (1997) presented a meta-analysis of studies assessing differences in performance between older people with depression and older people with dementia. These can be summarized as follows:

r Depression gave rise to moderate deficits on almost every type of test (with scores on

r r r r

r

average 0.64 of a standard deviation below control performance) but the extent of the deficits varied according to type of task. People with dementia showed much larger deficits than people with depression, especially on memory tasks (for instance, they did much worse on WMS logical memory and visual reproduction). Depression led to greater deficits on timed and speeded tasks than on untimed or nonspeeded tasks. People with dementia did much worse on nonspeeded tasks than people with depression. Therefore, nonspeeded tasks should be used as discriminators. For people with depression, WAIS performance tests were affected more than verbal tests and there were difficulties in problem solving. People with dementia were more likely to make false positive errors on recognition memory tasks. Performance on recognition memory tasks should therefore be assessed. People with depression did better on memory tasks with depressive content than on memory tasks with neutral or pleasant content. People with dementia did not show this differential effect. Therefore recall tasks incorporating depressed content are most useful. As regards specific tests, the best discriminators were paired associate learning, naming, block design and anomalous sentence repetition.

A further important difference is that people with depression are more likely to report subjective concerns about cognitive dysfunction, especially problems with memory and concentration. In the case of people with dementia, it may be family members who are worried and who initiate the referral, while the individual concerned may feel there is either little to worry about or nothing wrong at all.

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People with severe mental health problems such as psychosis may have cognitive impairments as a result either of the original problem or of the treatment. A significant proportion of people with a diagnosis of schizophrenia, for example, show severe impairments in memory (Clare et al., 1993). Therefore, if assessing someone who has had long-term mental health problems, extra caution is required in interpreting the results.

Distinguishing Different Types of Dementia ‘Dementia’ is an umbrella term, and there are many different possible subtypes of dementia. If assessment indicates that an older person may have dementia, it will also be necessary to consider which type of dementia this may be (see also Chapter 11, this volume). It is not the neuropsychologist’s role to provide a diagnosis and a diagnosis should never be made solely on the basis of neuropsychological test results. Nevertheless, it is important to be familiar with the relevant diagnostic criteria and the way in which these are typically applied, as well as understanding their limitations. For a general overview of diagnostic criteria see Henderson and Sartorius (1994). The most commonly diagnosed form of dementia is Alzheimer’s disease. Diagnostic criteria for Alzheimer’s disease are provided by NINCDS-ADRDA (McKhann et al., 1984), DSM-IV (American Psychiatric Association, 1995) and ICD-10 (World Health Organisation, 1992). These criteria require the presence of gradually worsening impairment in memory and at least one other area of cognitive functioning and specify that other possible causes of dementia must have been ruled out. Another frequently assigned dementia diagnosis is vascular (or multi-infarct) dementia. Diagnostic criteria for vascular dementia are provided by NINDS-AIREN (Roman et al., 1993), DSM-IV and ICD-10.These require the presence of cognitive decline with impairments in memory and at least one other area of cognitive functioning, with evidence of related cerebrovascular disease. Less common, but still significant, are Lewy Body dementia and frontal dementia. Diagnostic criteria for clinical diagnosis of dementia with Lewy bodies are provided by McKeith et al., 1996, and include progressive cognitive decline, possibly but not necessarily including memory in the early stages, with two of the following three features: fluctuating cognition, recurrent visual hallucinations or Parkinsonian features. Diagnostic criteria for dementia of frontal type are provided by Gregory and Hodges (1993). These emphasize the insidious onset of personality or behaviour change, behavioural features reflecting lack of control, apathy, or executive dysfunction, with supporting evidence from neuropsychological tests, and relative preservation of memory functioning. Frontal dementia forms part of the syndrome of fronto-temporal dementia, with the ‘temporal’ variant often referred to as ‘semantic’ dementia. Here the key feature in the early stages is isolated, profound semantic memory loss (Hodges et al., 1999). Alzheimer’s disease, vascular dementia and dementia with Lewy bodies are not easily distinguished on the basis of neuropsychological assessment but can be differentiated more effectively by reference to history, presentation and results of medical investigations in combination with neuropsychological test results. Key points are as follows:

r In vascular dementia there is a history of stepwise progression and risk factors for vascular illness are likely to be present. Neuroimaging should provide evidence for vascular damage.

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r In dementia with Lewy bodies there is fluctuating cognitive functioning and characteristic types of visual hallucination are present.

r In Alzheimer’s disease there is a gradual onset and progression, without the specific features of dementia with Lewy bodies. Risk factors for vascular illness may still be present. Essentially, Alzheimer’s remains a diagnosis of exclusion. It is especially important to detect dementia with Lewy bodies, because the presence of hallucinations may mean the problem is wrongly assumed to be psychosis and neuroleptics are prescribed, which can be fatal for people with DLB. It is easier to distinguish between Alzheimer’s disease and the ‘atypical’ forms of dementia represented by frontal dementia and semantic dementia. Blacker et al. (1994) note, however, that the distinction is made more complex because, alongside the typical Alzheimer’s presentation and progression, cases of ‘atypical’ Alzheimer’s are reported. For these people, the first symptoms may be in word finding, perception or praxis, with memory being much less affected than one would normally expect. Early prominent behavioural changes, however, strongly suggest that the problem is not Alzheimer’s but is much more likely to be frontal dementia. Where the first symptoms observed are language difficulties, the question arises as to whether this is atypical Alzheimer’s or fronto-temporal dementia. Blacker et al. (1994) suggest that these people should be given a diagnosis of Alzheimer’s disease if the presentation is otherwise typical but not if there are behavioural changes or other atypical features.

Distinguishing Moderate from Severe Dementia The CERAD studies (Welsh et al., 1991, 1992) demonstrated that delayed recall was not very useful in differentiating between moderate and severe dementia, since performance on delayed recall already showed floor effects in the early stages of dementia. For distinguishing between moderate and severe dementia, the best discriminators were verbal category fluency and constructional praxis. People with severe dementia can be assessed on the Severe Impairment Battery (Saxton et al., 1990). Wild and Kaye (1998) assessed a number of people with severe dementia and showed a range of performance on this test, indicating that some abilities remain even in the very severe stages. Cockburn and Keane (2001) similarly reported preserved performance on some elements of the RBMT even in severe dementia. This kind of assessment can be useful for planning care and designing interventions provided the practical implications are drawn out effectively.

Summary A good neuropsychological assessment battery aimed at detecting dementia therefore might encompass the following components, with an emphasis on nonspeeded tasks:

r delayed recall – incorporating depressive content if possible; r paired associate learning; r recognition memory;

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r semantic memory; r naming; r anomalous sentence repetition; r verbal letter fluency and category fluency; r executive function (abstraction, planning/organising, set shifting, problem-solving); r attention (sustained, selective, divided); r block design or other constructional praxis assessment.

CONCLUSIONS An older person referred for assessment of cognitive difficulties has the right to receive a thorough and comprehensive assessment. This is particularly important given that the outcome of assessment might involve a far-reaching diagnosis such as dementia. There can be no justification for making such judgements on the basis of inadequate information. Neuropsychological assessment contributes essential information to the process of identifying the reasons why an older person may be experiencing cognitive difficulties, when placed in the context of a multidisciplinary evaluation. It is, however, important to select tests in a way that provides the most efficient assessment possible and does not burden the older person with the need to complete unnecessary tests. Alongside this, it is vital to undertake the assessment in a way that is sensitive to the needs of the older person and to support the older person in engaging with the assessment process in order to achieve the best possible evaluation of strengths and difficulties and provide constructive and helpful recommendations.

REFERENCES American Psychiatric Association (1995) Diagnostic and Statistical Manual of Mental Disorders. Washington, DC, American Psychiatric Association. Bamford, C., Lamont, S., Eccles, M. et al. (2004) Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry, 19, 151–69. Blacker, D., Albert, M.S., Bassett, S.S. et al. (1994) Reliability and validity of NINCDS-ADRDA criteria for Alzheimer’s disease. Archives of Neurology, 51, 1198–204. Bowen, J., Teri, L., Kukull, W. et al. (1997) Progression to dementia in patients with isolated memory loss. The Lancet, 349, 763–5. British Psychological Society (2001) Fitness to Drive and Cognition. A Document of the MultiDisciplinary Working Party on Acquired Neuropsychological Deficits and Fitness to Drive 1999. British Psychological Society, Leicester. Burns, A., Lawlor, B. & Craig, S. (2003) Assessment Scales in Old Age Psychiatry. 2nd edn. Taylor & Francis, London. Christensen, H., Griffiths, K., MacKinnon, A. & Jacomb, P. (1997) A quantitative review of cognitive deficits in depression and Alzheimer-type dementia. Journal of the International Neuropsychological Society, 3, 631–51. Clare, L. (2002) Assessment and intervention in Alzheimer’s disease, in Handbook of Memory Disorders, 2nd edition. (eds A.D. Baddeley, B.A.Wilson & M.D. Kopelman). John Wiley & Sons, Chichester. Clare, L. (2003) Managing threats to self: awareness in early-stage Alzheimer’s disease. Social Science and Medicine, 57, 1017–29.

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Clare, L., McKenna, P.J., Mortimer, A.M. & Baddeley, A.D. (1993) Memory in schizophrenia: what is impaired and what is preserved? Neuropsychologia, 31, 1225–41. Clarke, C.M., Sheppard, L., Fillenbaum, G.G. et al. (1999) Variability in annual Mini-Mental State Examination score in patients with probable Alzheimer Disease. Archives of Neurology, 56, 857– 62. Cockburn, J. & Keane, J. (2001) Are changes in everyday memory over time in autopsy-confirmed Alzheimer’s disease related to changes in reported behaviour? In Cognitive Rehabilitation in Dementia (eds L. Clare & R.T. Woods). Psychology Press, Hove, pp. 201–17. Cohen, G. (1996) Memory and learning in normal ageing, in Handbook of the Clinical Psychology of Ageing, (ed. R.T. Woods). John Wiley & Sons, Chichester. Feehan, M., Knight, R.G. & Partridge, F.M. (1993) Cognitive complaint and test performance in elderly patients suffering depression or dementia. International Journal of Geriatric Psychiatry, 6, 287–93. Folstein, M.F., Folstein, S.E. & McHugh, P.R. (1975) ‘Mini-mental state’: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189– 98. Golding, E. (1989) The Middlesex Elderly Assessment of Mental State. Harcourt Assessment, Oxford. Gregory, C.A. & Hodges, J.R. (1993) Dementia of frontal type and the focal lobar atrophies. International Journal of Geriatric Psychiatry, 12, 375–83. Heal, H.C. & Husband, H.J. (1998) Disclosing a diagnosis of dementia: is age a factor? Aging & Mental Health, 2, 144–50. Henderson, A.S. & Sartorius, N. (1994) International criteria and differential diagnosis, in Dementia and Normal Aging (eds F. Huppert, C. Brayne & D.W. O’Connor). Cambridge University Press, Cambridge. Hodges, J.R., Patterson, K., Ward, R. et al. (1999) The differentiation of semantic dementia and frontal lobe dementia (temporal and frontal variants of frontotemporal dementia) from early Alzheimer’s disease: a comparative neuropsychological study. Neuropsychology, 13, 31–40. Huppert, F.A. (1994) Memory function in dementia and normal aging – dimension or dichotomy? In Dementia and Normal Aging (eds F.A. Huppert, C. Brayne & D.W. O’Connor). Cambridge University Press, Cambridge. Lezak, M.D., Howieson, D.B., Loring, D.W. et al. (2004) Neuropsychological Assessment, 4th edn. Oxford University Press, Oxford. Maguire, C.P., Kirby, M., Coen, R. et al. (1996) Family members’ attitudes toward telling the patient with Alzheimer’s disease their diagnosis. British Medical Journal, 313, 529–30. Mathuranath, P.S., Nestor, P.J., Berrios, G.E. et al. (2000) A brief cognitive test battery to differentiate Alzheimer’s disease and frontotemporal dementia. Neurology, 55, 1613–20. McKeith, I.G., Galasko, D., Kosaka, K., et al. (1996) Consensus guidelines for the clinical and pathological diagnosis of dementia with Lewy bodies (DLB) Report of the Consortium on DLB international workshop. Neurology, 47, 1113–24. McKenna, P. (1998) Fitness to drive: a neuropsychological perspective. Journal of Mental Health, 7, 9–18. McKhann, G., Drachman, D., Folstein, M. et al. (1984) Clinical diagnosis of Alzheimer’s disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services task force on Alzheimer’s disease. Neurology, 34, 939–44. Molloy, D.W., Alemayehu, E. & Roberts, R. (1991) Reliability of a standardised Mini-Mental State Examination compared with the traditional Mini-Mental State Examination. American Journal of Psychiatry, 140, 102–5. Morris, R. & Becker, J. (Eds) (2004) Cognitive Neuropsychology of Alzheimer’s Disease. Oxford University Press, Oxford. Petersen, R.C. (2004) Mild cognitive impairment as a diagnostic entity. Journal of Internal Medicine, 256, 183–94. Post, S.J. & Whitehouse, P.J. (1995) Fairhill guidelines on ethics and the care of people with Alzheimer’s disease in The Moral Challenge of Alzheimer’s Disease (ed. S.G. Post). Johns Hopkins University Press, Baltimore. Reisberg, B., Ferris, S.H., De Leon, M.J. & Crook, T. (1982) The global deterioration scale for assessment of primary degenerative dementia. American Journal of Psychiatry, 139, 1136–9.

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Rice, K. & Warner, N. (1994) Breaking the bad news: what do psychiatrists tell patients with dementia about their illness? International Journal of Geriatric Psychiatry, 9, 467–71. Roman, G.C., Tatemichi, T.K., Erkinjuntti, T. et al. (1993) Vascular dementia: diagnostic criteria for research studies. Report of the NINDS-AIREN International Workshop. Neurology, 43, 250–60. Ross, L.K., Arnsberger, P. & Fox, P.J. (1998) The relationship between cognitive functioning and disease severity with depression in dementia of the Alzheimer’s type. Aging and Mental Health, 2, 319–27. Roth, M., Huppert, F.A., Mountjoy, C.Q. & Tym, E. (1999) The Revised Cambridge Examination for Mental Disorders in the Elderly. Cambridge University Press, Cambridge. Saxton, J., Swihart, A., McGonigle-Gibson, K. et al. (1990) Assessment of the severely impaired patient: description and validation of a new neuropsychological test battery. Psychological Assessment, 2, 298–303. Snaith, R.P. & Zigmond, A.S. (1994) The Hospital Anxiety and Depression Scale. Windsor: NFERNelson. Sperlinger, D., Clare, L., Bradbury, N. & Culverwell, A. (2004) Measuring Psychosocial Outcomes with Older People. British Psychological Society, Leicester. Storandt, M. & Hill, R.D. (1989) Very mild senile dementia of the Alzheimer type. II. Psychometric test performance. Archives of Neurology, 46, 383–6. Strauss, E., Sherman, E.M. & Spreen, O. (2006) A Compendium of Neuropsychological Tests: Administration, Norms and Commentary, 3rd edn. Oxford University Press, Oxford. Tierney, M.C., Szalai, J.P., Snow, W.G. et al. (1996) Prediction of probable Alzheimer’s disease in memory-impaired patients: a prospective longitudinal study. Neurology, 46, 661–5. Welsh, K., Butters, N., Hughes, J. et al. (1991) Detection of abnormal memory decline in mild cases of Alzheimer’s disease using CERAD neuropsychological measures. Archives of Neurology, 48, 278–81. Welsh, K., Butters, N., Hughes, J. & Mohs, R. (1992) Detection and staging of dementia in Alzheimer’s disease: use of the neuropsychological measures developed for the Consortium to Establish a Registry for Alzheimer’s Disease. Archives of Neurology, 49, 448–52. Wild, K.V. & Kaye, J.A. (1998) The rate of progression of Alzheimer’s disease in the later stages: evidence from the Severe Impairment Battery. Journal of the International Neuropsychological Society, 4, 512–16. Winblad, B., Palmer, K., Kivipelto, M. et al. (2004) Mild cognitive impairment – beyond controversies, towards a consensus: report of the International Working Group on Mild Cognitive Impairment. Journal of Internal Medicine, 256, 240–6. World Health Organisation (1992) The ICD-10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines. Geneva, World Health Organisation, Division of Mental Health. Yesavage, J.A., Brink, T.L., Rose, T.L. et al. (1983) Development and validation of a geriatric depression screening scale: a preliminary report. Journal of Psychiatric Research, 17, 37–49.

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Assessing function, behaviour and need Adrienne Little with Breid Doherty South London and Maudsley NHS Trust, London UK

Note: for brevity particular measures are referred to in the text, figures and tables by initials. Full details of measures are given in the glossary at the end of the chapter.

WHY ASSESS? Mrs X, an 83-year-old widow, is referred to the local psychology service for ‘assessment’. She has a five-year history of memory difficulties and more recently has been experiencing problems looking after herself and her home. She lives alone, supported by her two sons. Her neighbours have found her wandering on a couple of occasions and describe her as ‘different’ from the person they knew, having become irritable and socially withdrawn. At times they have found her crying and ‘fretting’. Her sons disagree as to what is best for their mother – one wants her in a care home, the other thinks she could manage in her own flat with more support. Mrs X admits she feels lonely, but sees no need for services, let alone a move. It is still common for such an assessment to begin and end with a profile of Mrs X’s cognitive function. The psychologist might consider the implications of her test scores for her care – ‘Does Mrs X have capacity to refuse services?’ ‘Can her cognitive impairments explain her mood changes, self-care difficulties or wandering?’ ‘Does her level of impairment mean that she is at risk?’ ‘What services would help?’ However a broader assessment of her strengths and needs would be needed to address directly the issues that have led to the referral. Like many older people, Mrs X presents with complex needs that span many domains. The development of more person-centred approaches to care for older people with dementia and other mental health difficulties puts the full experience of the person at the centre of any assessment or intervention (Woods, 2001). Most cognitive tests were developed to assist in diagnosis rather than plan care or evaluate outcome. What does a particular score on a memory test mean in terms of Mrs X’s life? A cognitive assessment would be

Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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valuable (see Chapter 22, this volume), but it would be helpful also to assess directly Mrs X’s wellbeing, self-care and behaviour. Indeed, the psychologist might have to consider alternative types of assessment if, for example, Mrs X refuses cognitive tests or has particular impairments or cultural needs which make these tests difficult to administer or to interpret. In the UK, government policy has reinforced the importance of broad assessment. In England and Wales, the NHS and Community Care Act (Department of Health, 1990) stipulated that individuals’ care plans must follow from comprehensive assessments of need. There was a requirement that care plans should consider all areas relevant to the person’s quality of life and take account of their views as well as those of their carers and professionals. Local health and social care agencies were required to coordinate their assessment of individual clients’ needs. The Department of Health (1995) established the Care Programme Approach as a means of ensuring that people with mental health needs have a co-ordinated care plan based on a full assessment of need. In the same year, the Carers (Recognition and Services) Act specified that carers could request an assessment of need in their own right. These themes of comprehensive, coordinated and user- and carer-focused assessment have been elaborated within the National Service Framework (NSF). Standard Two of the Older Peoples’ NSF (Department of Health, 2001a; Welsh Assembly Government, 2006) requires services to adopt a person-centred approach to care. Assessment here is defined as the process whereby the needs of an individual are identified and their impact on daily living and quality of life is evaluated. The focus is on the views of the service user (and carer). The single assessment process (SAP in England; Unified Assessment in Wales) is the mechanism for ensuring this. Local services are required to develop and agree a standardized assessment process across all areas and agencies, which is comprehensive (covers a broad range of domains), proportionate (ensures that the older person receives a level of assessment appropriate to their needs) and joined up (ensures effective interagency and interprofessional work). The need for integrated assessment and care planning between health and social care is reinforced in relation to dementia by the NICE-SCIE Guidelines, (2006). The need for broad assessment also follows from developments in the clinical literature regarding the diagnosis, presentation and treatment of dementias. There is increasing evidence that different dementias present with particular ‘signatures’ (Clare et al., 2003). These characteristic profiles include noncognitive symptoms such as emotional and behavioural changes as well as distinctive patterns of cognitive impairments (Cummings et al., 1994). The ‘noncognitive’ features of dementia (often referred to as ‘behavioural and psychological’ or ‘neuropsychiatric’ symptoms) have a significant impact on the quality of life of people with dementia and their carers and may well determine their ability to manage at home. For example, Mrs X’s family and friends are more concerned about her mood and behaviour than her memory difficulties; it is her wandering and self-neglect that put her at risk and may lead to her moving to care. As many as 80% of people with dementia present with significant noncognitive impairment at some stage of their illness (Finkel, 2000). In order to take account of this, Winblad et al., (2001) argue that the current criteria for evaluating treatment success in dementia need to be broadened to include a comprehensive assessment of functional abilities, behaviour, quality of life and caregiver burden in addition to traditional cognitive measures.

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HOW TO ASSESS? The World Health Organisation (1989) identified seven ‘domains’ as significant to the wellbeing and health of older people – physical health, two mental health domains (cognition and mood), two self-care domains (ADL and IADL), and three resource domains (social, environmental and economic). Rabins (1994) describes a schema for assessing the impact of dementia which includes four domains – cognition, mood, behaviour and self-care – ‘each of which requires different conceptual and measurement perspectives’ (p. 206). Burns, Lawlor and Craig (1999; 2002) provide a detailed summary of over 160 standardized assessment scales developed and/or used in mental health services for older people which cover the range of these domains. Although there are tools available to provide a comprehensive, standardized assessment, it seems that few are used in routine clinical practice. Reilly et al., (2004) surveyed the assessment tools used by a random sample of mental health services for older people in England and Northern Ireland. They classified the measures used (as scales screening for cognitive impairment or depression; assessments of behaviour, self-care, psychiatric symptoms or caregiver strain; and ‘mixed scales’). Almost all services used at least one measure – typically the MMSE (Folstein et al., 1975) as a cognitive screen (used by 95% of services) – but the range of measures used was wide (from 1 to 12). Less than a quarter of services routinely assessed self-care or behaviour and fewer than 3% included any standardized assessment of ‘neuropsychiatric symptoms’. In this chapter we will examine measures and strategies to assess two important noncognitive domains (self-care and behaviour). Other chapters in this handbook discuss other domains; see Chapter 24 for a discussion of the assessment of wellbeing, mood and quality of life and Chapter 22 for in-depth coverage of neuropsychological assessment. The current chapter will then also consider multidimensional assessments of need and outcome, which cover all or most of these areas. We have not attempted an exhaustive review of the available measures. Instead we recommend relevant review papers, and select measures to illustrate particular types of assessment. To anticipate our conclusion, there is no ideal measure or battery. The available tools vary in length (from brief superficial screens to detailed assessments), breadth (assessing one or many domains) and format (with self, informant or performance ratings). Each measure has its advantages and disadvantages. Most referrals would benefit from a broad assessment considering several areas and including different formats. The referral must dictate the choice of measures. We will take Mrs X’s referral as an example throughout, to illustrate how different measures can contribute to a comprehensive assessment of needs as a basis for planning care.

ASSESSING EVERYDAY FUNCTION (SELF-CARE) Halpern and Fuhrer (1984, p. 402) define everyday function as the ‘specific behaviours that occur in real environments and are relevant to life.’ These behaviours range from basic self-care skills or ‘activities of daily living’ (ADL) such as dressing or mobility, to highly complex abilities or ‘instrumental activities of daily living’ (IADL) such as managing finances or medication. They influence whether an older person can remain at home, as well

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as quality of life (Bowling, 1991; Lichtenberg, 1998; Mahurin, De Bettignies & Pirozzolo, 1991). Community surveys demonstrate how common functional impairments are among older people and how inadequately older people may be supported (Hunt, 1978). Psychologists may be asked to consider the implications of cognitive test scores for everyday function and need for support. How well does Mrs X’s test performance predict her self-care? The relationship between measures of self-care and cognition varies with sample and measure; generally it is statistically significant, but modest (Heaton & Pendleton, 1981; Lichtenberg, 1998; McCue, 1997; McCue, Rogers & Goldstein, 1990; Nadler et al., 1993). For example, language may account for half of the variance in informant ratings of self-care (Ritchie & Ledesert, 1991). Some functional abilities have an obviously strong cognitive component. Mrs X’s language ability probably will predict how well she manages her medication as this demands the ability to read and understand instructions. More basic selfcare has a weaker cognitive component: Mrs X’s language ability cannot predict how well she manages stairs. There is, then, no direct correspondence between cognition and selfcare. Functional abilities draw upon many cognitive abilities (praxis, memory, perception) but also rely on other skills (motor, sensory, etc.). Some self-care tests try to examine the information-processing skills underpinning everyday function (for example, the CPT – Burns, Mortimer, & Merchak, 1994). It is clear that for an individual such as Mrs X, we cannot predict accurately her cognitive function from her self-care or vice versa. In order to estimate her support needs we will need to assess her everyday function directly. We often assume that self-care measures are less susceptible to the confounding effects of sociodemographic variables than cognitive tests. This may make them particularly useful when assessing someone from a different culture or with little education. However they are not free from bias. Self-care behaviour depends upon the constraints and demands placed upon the individual and the choices they make, as well as their abilities (McCue, 1997; Williams 1979). For example, in current cohorts of older people, gender is a powerful predictor of some functional abilities such as domestic skills (Teresi, Cross & Golden, 1989). If Mrs X is unable to prepare a meal this may indicate an acquired impairment; if Mr Y cannot, this may reflect his lifelong opportunities or choices! In line with this, a recent occupational therapy framework for assessing functional performance (the COPM) relies upon the client (or carer) identifying those areas that are personal priorities, rather than assessing a predetermined list of behaviours (Law et al., 1990). Any assessment of self-care will need to consider these past and present contextual factors, recognizing that not all older people have occupied traditional roles. How could we assess Mrs X’s self-care? There are many measures, reviewed by Burns, Lawlor and Craig (2002), Donaldson, Wagner and Gresham (1973), Gilleard (1984), Kluger, Reisberg and Ferris (1994), Lyle (1984) and Woods (1991). Most were developed to assess people with chronic physical disabilities. Table 23.1 illustrates some measures used to assess older people. These vary in content and format. The choice of measure will depend on who is being assessed and why.

Content of Measures The length of measures varies enormously, from a handful of items to 50 or more. Some scales consider only basic ADL (the ADL, Barthel, PSMS or RADL), some more complex IADL skills (the B-ADL, FAQ or IADL) and some consider a broad range of behaviours

Self = self-rating Inf. − informant rating Perf. = rating of observed performance

Yes – Yes – Yes Yes Inf.

20

Housework – – Laundry – – Use of transport – – Medication – – Money skills – – Are other realms included? No No Rating format(s) Self Perf.

Yes Yes Yes Yes Yes – – – – –

Content Continence Feeding/drinking Dressing Mobility Washing/bathing Grooming Shopping Use of key Use of telephone Food preparation/ Cooking

4

ADLST Yes Yes Yes Yes Yes Yes Yes – Yes Yes

7

Number of items

BADL

– – Yes – – – Yes – Yes Yes

ADL

Scale

B–ADL 10

BARTHEL CSADL 4

DADL

Yes – Yes – Yes Yes Yes – Yes – Yes – Yes – – – Yes Yes Yes Yes

66 – Yes – – – Yes Yes – Yes –

7

DAFS

– – Yes – – – – – – – Yes – Yes – Yes Yes – Yes – – Yes – Yes Yes Yes Yes No Yes No Yes Inf. Inf. Inf. Perf. Perf.

Yes Yes Yes Yes Yes Yes – – Yes – Yes –

– – – – – Yes Yes

25

DAQCOTS Yes – – – Yes Yes Inf.

Yes Yes Yes Yes Yes Yes Yes – Yes Yes

12

ECA Yes Yes – – – Yes Inf.

Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes

32

Yes Yes Yes Yes Yes Yes Self Inf. Perf.

Yes Yes Yes Yes Yes Yes Yes – Yes Yes

57

EPAC

Table 23.1 Some measures of everyday functions developed for assessing older people

FAST FAQ 10

8

IADL

– – Yes – Yes Yes Inf.

– – Yes – Yes Yes Self

Yes Yes Yes Yes Yes No Inf.

Yes – – Yes – – Yes – – Yes – – Yes – – – – – Yes Yes Yes – – – – – Yes – Yes Yes

16

IDD – – Yes – Yes Yes Inf.

Yes Yes Yes – Yes Yes – – Yes –

33

INCARE

PADL(E) – Yes Yes – – Yes – Yes Yes –

17

PSMS Yes Yes Yes Yes Yes Yes – – – –

6

RADL Yes Yes Yes – Yes Yes – – – –

14

Yes Yes Yes Yes Yes Yes Yes – Yes –

18

RDRS–2

– Yes Yes Yes – – – Yes Yes –

50

Yes – – – – – Yes – – – – – Yes – – – – – Yes Yes – – – Yes Yes Yes – – Yes – Yes No No No Yes Yes Self Perf. Inf. Perf. Inf. Perf. Inf. Perf.

Yes Yes Yes – Yes Yes Yes Yes Yes Yes

18

SAILS

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‘Easiest task’

‘Hardest task’

Failure rate

Task

…………….

Drinking/Feeding (3%)

…………….

Grooming (17%)

…………….

Continence (21%)

…………….

Dressing (28%)

…………….

Light chores (41%)

…………….

Bathing (66%)

…………….

Preparing meals (69%)

…………….

Shopping (82%)

…………….

Laundry (90%)

…………….

Heavy chores (90%)

Figure 23.1 Example of a hierarchy of everyday functions. Percentages refer to the percentage of Kay, Holding, Jones and Littler’s (1991) community sample who failed that task.

(the ADLST, BADL, CSADL, DADL, DAFS, DAQ(OT), ECA, EPAC, FAST, IDD, INCARE, PADL(E), RDRS-2 or SAILS). Broader scales are useful when assessing someone about whom little is known, or when establishing a baseline in order to monitor change. In other situations (for example when a person’s ability level is clear or a more specific assessment of a particular area of skill is required) it is more cost-effective to select a scale that examines a restricted range of self-care in detail. For example, the FAQ or IADL would be useful to assess Mrs X who lives (relatively) independently; more basic measures would be appropriate for someone living in a nursing home. This model assumes that self-care can be graded along a hierarchy of difficulty, often represented as a Guttman scale (Katz et al., 1963; Lawton, 1972; 1983; Williams et al., 1976). Figure 23.1 illustrates a hierarchy, taken from Kay et al. (1991). From this we assume that if Mrs X can perform a given task (e.g. dress) then she can also perform simpler tasks (e.g. feed). Conversely, if she fails a task (e.g. meal preparation) then she will fail harder tasks (e.g. shopping). This speeds up the assessment, avoiding redundant testing. However, we must be cautious, as this model may oversimplify self-care breakdown. Williams (1979) suggests that self-care disability reflects social choice as well as impairment. Mrs X may be able to groom herself and prepare meals. However, she may choose to concentrate her efforts on maintaining her appearance rather than cooking. The ‘social choice model’ highlights the importance of considering a person’s self-care in the context of their history. It also shows the importance of assessing both competence (what Mrs X can do) and performance (what she does). Few measures specify which they assess; very few consider both. This will depend in part on the rating format.

Rating Format Most self-care assessments are rating scales, to be completed by an informant (staff or carer). A few (typically those developed for use in community surveys) ask older people to rate

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their own abilities. Others rely on performance assessment – either in vivo or in simulated test situations (e.g. the OT kitchen). Two scales (the EPAC and INCARE) include alternative rating formats. Some different formats, examining how well Mrs X can dress herself, are illustrated below: 1. Self rating, from the ADL (one item). ‘Do you dress yourself without any help or appliances (including putting on shoes and socks, stockings)’? 2. Informant rating, from the ECA (four items): (a) dressing (six-point scale); (b) undressing (five-point scale); (c) putting on shoes (four-point scale); (d) taking off shoes (three-point scale). 3. Performance rating, from the SAILS (five items with four-point scales, rating ability and speed) (a) puts on shirt; (b) buttons cuffs of shirt; (c) puts on jacket; (d) ties shoelaces; (e) puts on gloves. Each format has its advantages and disadvantages. Direct observation in vivo will provide the best assessment of Mrs X’s dressing in real life. It would allow us to examine the process (how she dresses) as well as the outcome (whether she can dress), which may give us a clearer picture of what help she needs. However it is expensive, intrusive and may be confounded by test anxiety. Informant or self-ratings typically do not disentangle whether Mrs X is unable to, chooses not to, or is prevented from, dressing herself. Both may be biased; Mrs X may have no insight into her dressing difficulties or be too embarrassed to report them; her sons may be unaware of, or exaggerate, or minimize any difficulties. Several studies have considered the relationship between alternative rating formats (Ballard et al., 1991; Kuriansky, Gurland & Fleiss, 1976; Little et al., 1986; Myers & Huddy, 1985; Pfeffer et al., 1982). Levels of agreement are moderate or low, particularly when the older person shows cognitive impairment. Ballard et al. compared the ratings of people with dementia and their carers across several realms. The overall level of agreement was 76%, but this fell to 45% for self-care. They suggest that people with dementia consistently underreport difficulties. Ideally an assessment should integrate information from several sources – the older person, carers, professionals etc. For example, Burgio and Burgio (1991) consider methods of assessing incontinence. This behaviour is multidimensional. A complete assessment would cover several domains (physical, environment, cognitive, behaviour). It would include many formats: an interview with the older person; carers’ ratings; performance assessments of component skills; baseline monitoring; specialist assessments (medical, OT, etc.). Few ‘off-the-shelf’ measures provide such a comprehensive assessment. The EPAC and the INCARE are notable exceptions. As an example, the INCARE covers 18 areas. Ratings of each are made by three formats: a screening schedule given to the older person, an informant interview and a structured performance assessment.

36

Yes Yes Yes Yes

Content Challenging behaviour Everyday function Mood Cognitive impairment

BASOLL

Number of items

Scale

Yes Yes – –

18

CAPE BRS

Yes Yes Yes Yes

11

Crichton

Yes Yes – –

31

GRS

Table 23.2 Behaviour rating scales developed for assessing older people

Yes Yes Yes Yes

40

MOSES

Yes Yes Yes Yes

30

NOSGER

Yes Yes Yes Yes

77

PAMIE

Yes Yes – Yes

42

PGDRS

Yes Yes Yes Yes

19

SCAG

Yes Yes – –

33

Stockton

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ASSESSING BEHAVIOUR Changes in behaviour (such as Mrs X’s ‘wandering’) are often the presenting problem, causing distress to the person and his or her caregivers. These changes can lead to serious management difficulties, which may mean, in this case, that Mrs X has to be medicated or move to a care home. Effective intervention to avoid this requires careful assessment. Changes in the person’s behaviour may be due to any number of factors, such as physical illness, brain damage or environmental changes. Hope et al. describe typologies for aggression and wandering in older people (Hope & Fairburn, 1990; Hope et al., 1994; Ware, Fairburn & Hope, 1990). Using these, Mrs X’s wandering might be seen as one of seven types of ‘abnormal walking’, requiring physical and/or psychological intervention. How can we assess such behaviour? Four types of measures are available – behaviour rating scales, clinical ratings of symptoms, informant ratings of challenging behaviour and assessment frameworks for rating observed behaviour in vivo.

Behaviour Rating Scales Behaviour rating scales (BRS) are understandably popular. They are relatively quick and easy to complete. They provide an assessment of the older person’s ‘behaviour’ from the perspective of an informant (staff or carer). They include items assessing one or more domains in addition to ‘challenging behaviour’. However, although many of these scales have well established reliability and validity, in practice they are subjective and will only be as good as the informant. Nonetheless, they can offer a useful picture of how significant others perceive an older person’s needs. Burns, Lawlor and Craig (2002), Gilleard (1984), Hope and Fairburn (1992), Woods and Britton (1985) and Kluger, Reisberg and Ferris (1994) review some of the structured rating scales available. Some of these were developed to assess people with long-term mental health problems and do not have established reliability or validity for older people. We shall only consider scales developed specifically for use with older people. Table 23.2 describes 10 of these. Sturmey (1994) reviews studies examining the factor structure of BRS. Most report three factors: challenging behaviour, self-care and cognitive impairment. Some include other items assessing mood. The content of scales is similar – typically later scales draw from the earlier ones such as the Stockton and Crichton. Given the breadth of their content, most BRS can offer only a superficial assessment of challenging behaviour. For example, the BASOLL includes 36 items. Only five items examine challenging behaviour (e.g. threatening others); others measure self-care (e.g. washing), mood disturbance (e.g. complaints of depression, change in appetite) and cognitive impairment (e.g. not recognizing relatives). This offers a useful screen for potential areas of difficulty which require detailed assessment. The BASOLL is also available as an interview version, which assesses the older person from the perspective of an informal carer, who rates the presence of each behavioural problem and their reaction to it. This helps identify the priorities for planning care. If Mrs X’s sons tolerate her difficulties in self-care but are distressed by her agitation or wandering, the care plan may need to target these behaviours.

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HANDBOOK OF THE CLINICAL PSYCHOLOGY OF AGEING Table 23.3 Clinical Ratings of Severity of dementia Scale

CDR

GDS

DRS

GBS

6

–

27

26

– Yes – Yes

Yes Yes – Yes

Yes Yes – Yes

Yes Yes Yes Yes

Number of items Content Challenging behaviour Everyday function Mood Cognitive impairment

Clinical Ratings of Dementia and Dementia Symptoms Several scales have been developed to rate the level or severity of dementia. These are similar in content to the BRS – including challenging behaviour, self-care, mood and cognitive impairment – but rely upon the ratings made by trained clinicians rather than care staff or informal carers. Table 23.3 describes the most commonly used scales. They are used extensively in research studies to define eligibility criteria or describe samples. They can be useful with individual patients, providing a global assessment of, for example, how impaired Mrs X is relative to others or monitoring the progression of her dementia. However, they would be less helpful for analysing her needs or planning her care. As with the BRS described above, they can help identify domains that require more detailed assessment. Other clinical scales rate the behavioural and psychological symptoms (BPSD), thought to be characteristic of dementia. These provide a more detailed assessment of specific areas. The term BPSD was established by a Task Force of the International Psychogeriatric Association in 1996 to cover various noncognitive symptoms of dementia (Finkel, 2000) (see Chapter 33, this volume, for a critique of the BPSD concept). Luxenberg (2000) classifies seven ‘psychological’ and five ‘behavioural’ symptoms. Finkel (1996) reviews more than two dozen scales developed to assess these. Table 23.4 describes six of the most common using Luxenberg’s framework. Most of these scales rate the frequency and/or severity of symptoms. Two scales (the NPI and BEHAVE-AD) also examine the impact of symptoms upon carers. This can be helpful to identify targets for intervention. The PBE provides the most comprehensive assessment but is long (187 items). Some scales emphasize particular types of symptoms – for example, the CUSPAD and MOUSEPAD give relatively detailed ratings of psychotic symptoms, whereas the CERAD gives a detailed assessment of mood disorder. In addition to these global measures, there are a few scales available that examine specific symptoms such as irritability or anxiety. The reader is referred to Burns, Lawlor and Craig (1999; 2002) for details.

Measures of Challenging Behaviour There is considerable overlap between the BRS, the clinical rating scales for BPSD and scales assessing the range of ‘challenging’ behaviours characteristic of people with

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Table 23.4 Clinical ratings of the behavioural and psychological symptoms characteristic of dementia Scale

Behave–AD CUSPAD CERAD MOUSEPAD NPI PBE

Number of items

25

26

46

59

12

187

Behavioural symptoms • Aggression • Wandering • Sleep disturbance • Inappropriate eating • Inappropriate sexual behaviour

Yes Yes Yes – –

Yes Yes – – –

Yes Yes Yes Yes Yes

Yes Yes Yes Yes Yes

Yes Yes Yes Yes Yes

Yes Yes Yes Yes Yes

Psychological symptoms • Delusions • hallucinations • paranoia • depression • anxiety • reduplication • misidentification

Yes Yes Yes Yes Yes – Yes

Yes Yes Yes Yes – – Yes

Yes Yes Yes Yes Yes – Yes

Yes Yes Yes – – Yes Yes

Yes Yes – Yes Yes – –

Yes Yes Yes Yes Yes Yes Yes

Rating • Severity • Frequency • Impact

Yes No Yes

No No No

No Yes No

Yes Yes No

Yes Yes Yes

Yes Yes No

Table 23.5 Assessments of challenging behaviours characteristic of dementia Scale

Number of items

BEAM-D

16

BRSD

48

CBS

25

COBRA

30

DBDS DBRI

28 25

DBRS NHBRS NOIE

21 29 30 or 80

Rating

Timescale

Rater

combined frequency & severity 1. frequency 2. severity 1. frequency 2. severity 1. frequency 2. severity frequency 1. frequency 2. severity impact frequency frequency

unspecified

trained raters

1 month

interview with carer

8 weeks

staff (individuals or group) staff or carers

3 months 1 week unspecified daily 3 days 3 days

carers nurse from carer interview staff or carers staff nurses

dementia. Table 23.5 describes a selection of the most widely used (see also Chapter 33, this volume). Unlike the broader BRS, challenging behaviour rating scales do not consider other domains. Unlike the BPSD ratings, most of these scales are designed to be used by either staff or informal carers rather than clinicians. Typically they ask informants to rate the frequency or severity of a behaviour over a variable time scale. However they define

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behaviour in different ways. Some scales (the BEAM-D, BRSD and DBRI) require the rater to make a subjective inference about the purpose of the observed behaviour (e.g. ‘Has Mrs X been aggressive?’). The other scales base their ratings upon more objective descriptions of observed behaviour (for example, ‘Has she hit anyone?’) and as such are likely to provide more reliable and valid ratings. Spanning a broad range of behaviours, inevitably these scales offer relatively superficial assessments of particular behaviours. They are useful when assessing the needs of groups of people. Typically, in the individual case, any challenging behaviour will be presented spontaneously by carers or staff early on in the assessment. However it may be helpful to use one of these global scales to screen for any other behaviours that are less evident. When a specific behaviour has been identified, other scales are available to assess these in depth: 1. Aggression – OAS (Yudofsky et al., 1986); RAGE (Patel & Hope, 1992); RAS (Ryden, 1988); SOAS (Palmerstein & Wistedt, 1987). 2. Agitation – CMAI (Cohen-Mansfield et al., 1989); SOAPD (Hurley et al., 1999). 3. Wandering – AWS (Algase et al., 2004). 4. Irritability/aggression/apathy – IAAS (Burns et al., 1990). 5. Feeding difficulties – FDDS (Watson, 1997). 6. Noise – DVS (Cohen-Mansfield & Werner, 1997). 7. Self harm – HBS (Draper et al., 2002). 8. Resistance to care – RTC-DAT (Mahoney et al., 1999). Most of these were developed for use in a particular setting or study and data on reliability and validity are often limited. Clinically they are useful in helping to analyse the behaviour prior to planning intervention. With Mrs X, we might want to examine her wandering in more detail with the CMAI or AWS. As an example, the AWS is a 38-item rating of the frequencies of specific behaviours (e.g. ‘walks without an apparent destination’, ‘tries to leave the table at meal times’, ‘pivots in one place’, ‘attempts to go to familiar locations’) based upon the authors’ conceptual model of wandering. A central issue for any measure of challenging behaviour is how this is defined. Bird and Moniz-Cook (2003) suggest that ‘challenging behaviour’ must be viewed as a social construction, dependent upon the reaction of the rater as well as the behaviour itself (see Chapter 33, this volume). Mrs X’s neighbour may perceive her pacing up and down the road as harmless exercise; her son may view it as risky wandering. Bird & Moniz-Cook define challenging behaviour as any behaviour that causes distress to the person and that staff or carers find difficult to manage. Inevitably this means that assessment of challenging behaviour must take account of the reactions of informants and will be subjective to some extent. This may well explain why figures for the interrater reliability of challenging behaviour ratings are often low (particularly for more subjectively defined items). Several studies have examined patterns of bias in informant ratings of challenging behaviour – it seems that ratings are related to staff grade (Snowdon et al., 1996), qualifications (Moniz-Cook, Woods & Gardiner, 2000), stress and anxiety levels (Moniz-Cook et al., 2001; Silver, Moniz-Cook & Wang, 1998) and the way care is structured (Moniz-Cook et al., 2001). Generally reliability is improved if raters are trained in using the scale, or rate as a group (Moniz-Cook et al., 2001).

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Table 23.6 Methods of rating observed behaviour Method

Example(s)

Observation recording schedule

Patient Behaviour Observation Instrument (Bowie & Mountain, 1993)

Behaviour mapping

1. Agitation Behaviour Mapping Instrument (Cohen-Mansfield, Werner & Marx, 1992) 2. Dementia care mapping (Kitwood & Bredin, 1992)

Functional analysis Behavioural tests

ABC analysis (Stokes, 1986a, 1986b, 1987a, 1987b) Social skills assessment (Engels, 1991)

Frameworks for Rating Behaviour In Vivo Informant ratings describe the type, frequency and/or severity of challenging behaviour; direct observation can assess the interaction between behaviour and its context. This may identify factors eliciting or maintaining the behaviour. Several methods have been used to rate observed behaviour with older people (Table 23.6). All are inherently expensive. They pose many potential problems of reliability and validity (Barlow & Hersen, 1984). For example, the act of observing ‘everyday behaviour’ may itself change it. Being ‘a fly on the wall’ is not easy. Observers are limited in the range of behaviours they can assess or process. As a result, observer ratings generally focus on restricted categories of behaviour. Notwithstanding these difficulties, direct observation can be very useful. Observation recording schedules aim to capture snapshots of typical behaviour. Raters observe and classify behaviour according to predetermined categories. This format has been used extensively to measure ‘engagement’ (McFadyen, 1984). The PBOI, for example, records behaviours ‘typical’ of inpatients with dementia. Using portable computers, observers rate the occurrence of seven categories of behaviour during 10-second observation periods. Categories are clearly defined; for example ‘inappropriate’ includes behaviours ‘which would normally be seen as unacceptable, but do not violate others – this includes sucking fingers, urinating inappropriately, spitting or throwing food on the floor and talking to oneself’ (Bowie & Mountain, 1993, p. 859). Generally this type of measure reveals how little people with dementia do; it can describe how someone behaves but not explain why. Does Mrs X do nothing because of her cognitive impairment or the care environment? Other scales extend the observation format to rate the environment and personenvironment interaction. For example, Cohen-Mansfield, Werner and Marx (1992) developed the ABMI to rate the occurrence of specified ‘agitated’ behaviours, such as ‘constant requests for attention’. When a behaviour occurs, observers note to whom or at what the behaviour appears directed, whether and by whom or what the behaviour appears triggered and any reaction to it. They found little relationship between the social environment and these behaviours, for example on almost 90% of occasions there was no discernible trigger. They suggest this reflects the extreme monotony of institutional environments. Different behaviours may be environmentally determined. Using a similar assessment method, Meyer, Schalock and Genaidy (1991) identified antecedents for almost 85% of aggressive behaviours shown by older people in psychiatric facilities.

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Dementia Care Mapping (Kitwood & Bredin, 1992) provides an observational model for examining the experience of a client within a care context. The rater codes not only what the person with dementia is doing (‘Behavioural Category Codes’), but also assesses their wellbeing (‘Well/Ill Being Values’). This offers a means of analysing the impact of the care environment upon the person which provides a basis for evaluating the quality of the service (Fossey, Lee & Ballard, 2002). However, Thornton, Hatton and Tatham (2004) suggest that earlier studies may have overestimated the reliability and validity of this tool. Early studies (e.g. Bredin, Kitwood & Wattis, 1995) were based upon ratings made by expert mappers from the Bradford Dementia Group. Thornton et al. examined ratings made by nonexpert (but trained) raters mapping their own services. Interrater reliability was poor for several of the behaviour codes and all well/ill being values. Furthermore, although the ratings reflected accurately engaged behaviours, they appeared to underestimate inactivity. Functional analysis offers a useful framework to examine the relationship between behaviour and environment. It can help disentangle the various factors that may contribute to a given behaviour. Stokes (1986a; 1986b; 1987a; 1987b) and Moniz-Cook, Woods and Richards (2001) apply this to the challenging behaviour of people with dementia. They recommend models of applied behavioural analysis that take account of ‘unobservable’ events such as thoughts or beliefs as well as the observable antecedents and consequents of behaviour. The assessment would therefore need to include an assessment of the person and their history as well as direct observation and informant ratings of behaviour (see Chapter 33, this volume). We might need to examine the previous pattern of Mrs X’s days, her likes and dislikes, her own perception of her behaviour and so forth in order to understand the function of her ‘wandering’. The key advantage of this model of assessment is that it leads directly to individually tailored intervention. For example, Moniz-Cook, Woods and Richards (2001) describe a series of five case studies (of people with agitation or aggression) where detailed observation and analysis of behaviour generated hypotheses as to the function of the behaviour. These led in turn to targeted treatment. All these methods consider behaviour in its everyday setting; other methods assess behaviour elicited in test settings. For example, Engels (1991) uses behavioural role-play exercises to assess social behaviour. These methods are more convenient and less costly but may be less valid.

MULTIDIMENSIONAL ASSESSMENTS OF NEED What is Need? Current policy dictates that the services we offer older people should be based upon a comprehensive assessment of their needs. Unfortunately there is no agreed definition of need; ‘need is an elusive concept and in the vocabulary of politicians inevitably a slippery one’ (Grimley-Evans, 2004, p. xii). Given this, it is not surprising that needs assessment is ‘conceptually muddled and technically difficult’ (Stevens & Gabbay, 1991, p. 20). The Social Services Inspectorate (1991) describes a need as that which is required for a person to achieve, maintain or restore an acceptable level of independence and quality of life. ‘Requirement’ could reflect impairment, disability or dependency (for example, the

ASSESSING FUNCTION, BEHAVIOUR AND NEED ‘Need’

399 ‘Demand’

unmet or unmeetable needs wanted but unnecessary services (e.g. inappropriate medication) useful & wanted (e.g. social support) useful but unwanted services (e.g. home help) unnecessary and unwanted services (e.g. shopping service)

Figure 23.2 Need, demand or supply?

symptoms Mrs X presents, her diagnosis, what she is unable to do, what she requires help with). However, what Mrs X ‘requires’ may be different from what she wants (‘demand’). The Audit Commission (2000) adopts the Donabedian (1974) definition of need as the ability to benefit from care (what would help Mrs X). Stevens and Gabbay (1991) examine the relationship between need (requirement), demand and supply (see Figure 23.2). These may be incongruent, which can pose the ethical dilemma of reconciling requirement and demand. Ideally the services provided will be those that Mrs X can benefit from and wants (such as social support to reduce her isolation). At worst, she might be offered services she neither wants nor can benefit from (delivering her groceries to her door). She may benefit from other services (home care to supervise her self-care or domestic chores), which she refuses. She may demand services that would not help her (inappropriate medication to help her sleep). Mrs X may present ‘unmet’ needs’ for which there is no effective intervention available. These may highlight local gaps in service provision (for example, a night sitting service) or ‘unmeetable needs’ (disability for which there is no intervention).

How is Need Assessed? Although standardized assessment of need is a requirement, how needs are assessed and how older people access assessments seems to vary across the country. Martin, Pehrson and Orrell (1999) surveyed the needs assessment policies and practices in use in local authority services for older people with mental health problems. They found wide variation in responses to their postal questionnaire. Whereas almost all services routinely assessed need in relation to memory impairments, other significant areas of need were examined in a minority of services (such as dental care, interpersonal relationships). Less than a third of services had used published scales to help design their local assessments. There are many frameworks for assessing need. Some examine requirement, some demand. The most useful look at both perspectives as well as the resources available. We will consider four – structured survey interviews, goal planning, needs assessment tools and single assessment process tools.

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Table 23.7 Structured interviews providing multidimensional assessments of need Scale Duration of interview Domains assessed Cognition Mood Everyday function Challenging behaviour Physical health Social Environment Financial Service use

CARE

MAI

OARS

SELF

Up to three hours

One hour

11 /2 hours

11 /2 hours

Yes Yes Yes – Yes Yes – – Yes

Yes Yes Yes – Yes Yes Yes – –

Yes Yes Yes – – Yes – Yes Yes

Yes Yes Yes – Yes Yes – – –

Structured Survey Interviews These instruments were developed to survey populations in order to profile local needs or identify cases. They were designed to be used by lay interviewers with minimal training. Table 23.7 describes four measures. The MAI, for example, includes 131 items forming seven scales: physical health, cognition, self-care, time use (hobbies etc.), social interaction, personal adjustment (morale and psychiatric symptoms) and environment (housing, personal safety, etc.). The interview is directed at the older person but interviewers can seek information from others. Like all these measures, the MAI targets the relatively well older person. None of these measures assesses challenging behaviour. All rely heavily upon self-ratings, limiting their value for assessing people with limited insight or cognitive assessment. The interviews are all long (for instance, the full CARE can take three hours), but inevitably they assess each domain superficially. For example, cognitive function is examined by brief mental status questionnaires and/or a few questions about symptoms of impairment. Although these interviews may provide a convenient initial screen, usually further information would be required to corroborate and extend the assessment in clinical practice.

Goal Planning Goal planning provides a model for assessing need as a basis for developing care plans. Barrowclough and Fleming (1986a, 1986b) use a constructional framework of assessment, considering abilities as well as impairments and defining impairments as needs to be met rather than problems to be eliminated. Raters gather information from several sources: interviews with the older person, family and/or staff; observation of behaviour; specialist assessments; and an informant scale (the EPAC described in Table 23.1). This provides a profile of strengths and needs across several realms. A strengths-needs analysis for Mrs X might look like the following: Strengths (1) Healthy (2) Mobile

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(3) Interested in keeping busy (4) Likes to look attractive (5) Talented painter (6) Financially secure (7) Very caring family (8) Socially skilled Needs (1) To eat at regular times (2) To lock her door and carry a key when she goes out (3) To use her watch, clock, calendar and daily paper to orient herself (4) To change her underwear every day (5) To socialize every day The goal plan then specifies services or interventions to meet these needs. Barrowclough & Fleming illustrate how goal planning can be applied in residential and day-care settings. Harding, Baldwin and Baser (1987) describe a similar model, the multilevel needs assessment.

Needs Assessment Tools These tools go beyond assessing current function to examine the adequacy of current supports and potential for other input. The first of these, the MRC Need for Care Assessment (Brewin, 1992), was developed to assess people with long-term mental illness. Twenty areas of function are assessed. As it stands, these reflect the needs of people with long-term mental illness, such as medication side effects and positive psychotic symptoms. Many, but not all, are relevant for older people in general, for example physical health, self-care. Other important areas are not covered, such as incontinence. The interviewer rates each area for morbidity (‘Is there a need?’) and service need (‘Are any or other services required?’). Information is drawn from several sources, including the client, carers and staff. The final ratings describe areas of need and specify which needs are met or can be met. A particularly useful category is ‘service overprovision’, which Brewin suggests may be as widespread and damaging as underprovision. The Camberwell Assessment of Need for the Elderly (CANE) developed from an extension of the MRC Need for Care Assessment, the Camberwell Assessment of Need or CAN (Phelan et al., 1995). This has now been published by the Royal College of Psychiatrists (Orrell & Hancock, 2004). Reynolds et al., (2000, 2004) modified the CAN specifically for use with people aged 65 and over, refining and adding items on the basis of discussions with users, carers and professionals. The CANE was intended to be used in any setting. Orrell and Hancock (2004) have collected ten studies that describe its development, validation and use in the UK and internationally. It has been translated into several languages and piloted and used with different cultural groups. There is good evidence for its reliability and validity. The CANE offers a broad assessment of 24 areas of potential need for the older person (spanning physical health, mood, cognitive impairment, behaviour, self-care, social relationships, and resources) as well as two areas of carers’ needs (information and psychological distress). The scale is intended to be used by a trained professional who rates each area on the basis of information drawn from the older person, their carers and service

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providers. The time required to gather the information varies, but the authors suggest an average of 24 minutes each for the interviews with the older person and carers, 13 minutes for staff. The rater classifies each area as to whether there is a need (‘no need’, ‘met need’, ‘unmet need’), details the help received from both informal supports and services, and rates the adequacy of this help and the user’s satisfaction. There is an electronic version available. Although the rating reflects the view of the professional, it is also possible to gather ratings from the perspectives of the older person, staff and carers and to examine inconsistencies between these (Hancock et al., 2003; Walters et al., 2000). Ashaye, Livingston and Orrell (2003, 2004) suggest that the CANE could be used as a framework for multiprofessional and multiagency work, as an adjunct or alternative to the Care Programme Approach (CPA). In two day hospitals, they compared the needs identified by the teams from their routine CPA assessments with those identified by the CANE. The CANE identified significantly more needs (met and unmet) than the CPA, suggesting that standardized assessment might help services plan more effective care. However, there was no evidence that feeding back the CANE assessments to teams improved outcomes for their patients. Over time, patients benefited (assessed via the HoNOS 65+, see below) and the numbers of unmet needs reduced significantly, irrespective of whether or not the results of the CANE assessments were given to the teams. It is possible that the study contaminated staff behaviour (the authors suggest they may have paid more attention to need). Alternatively, it may indicate that simply improving awareness of need does not necessarily lead to better care. The CareNap-D (McWalter et al., 1993, 1994, 1998) employs a very similar framework but was developed specifically to help professionals assess the support needs of people with dementia and their carers. It includes seven scales assessing the needs of the older person (such as health and mobility, behaviour and mental state) and six assessing the carer (for example, daily difficulties, ‘feelings’). The rater identifies areas of difficulty and examines whether these needs are met on the basis of information drawn from a range of sources (including the person with dementia and their carers). Typically this takes at most one hour. This provides a profile of need status and describes what support is required for any unmet need. There is a software package available to manage data. As an example, Mrs X’s CareNap-D profile is described below: Unmet needs 1. Disorientation 2. Domestic chores 3. Loneliness 4. Personal hygiene Unmeetable needs 1. Hearing loss Overprovision of services 1. Shopping Assessment of needs is also vital for planning services. Both the CANE (Dech & Machleidt, 2004; Field, Walker & Orrell, 2004; Hammond, Walter & Orrell, 2004; Hoe et al., 2004; Martin et al., 2004) and CareNap-D (Meaney, Croke & Kirby, 2005) have been used to provide profiles of population needs. The Tayside Profile for Dementia Planning (Gordon et al., 1997) was developed in order to survey the service needs of local people with dementia.

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Table 23.8 Accredited SAP overview tools (July 2004) Tool

Study

Email address

CAT (electronic version) EASY-Care (version 2004) FACE (version 5.0) MDS Home Care (version 2.3) NOAT STEP

Howe (2002)

[email protected] [email protected] [email protected] [email protected]

Elzinga et al. (2001) Carpenter et al. (2002); Challis et al. (2000) Williams et al. (2002)

[email protected] [email protected]

This is briefer than the CANE or CareNap-D and was designed to be used by nonspecialists. Data are collected (by post or interview) from informants (staff or carers) who rate the older person’s needs in seven areas (cognitive impairment, mobility, ALD, IADL, behaviour, isolation and material needs) as well as the needs of carers and any current care inputs.

Single Assessment Process (SAP) Tools In England, the Department of Health (2001b) has issued guidance to help local services implement the SAP. The SAP is a framework for assessment and care provision for all older people, to be used in conjunction with the Care Programme Approach for those with psychosis and similar severe mental illness. Here, assessment is about identifying and evaluating needs in order to arrive at appropriate interventions. The SAP aims to ensure that assessment is effective and efficient – leading to better outcomes for the older person and their carers and the most cost-effective use of professional resources (and user and carer time). The framework includes four levels of assessment: 1. Contact – covering basic personal information. 2. Overview – a broad assessment of need across nine domains (including ‘clinical background’, ‘personal care and wellbeing’, ‘mental health’, ‘relationships’, ‘safety’). 3. In-depth – a detailed assessment of one or more specific domains. 4. Comprehensive – in-depth assessment of most or all of these domains. The level of assessment offered should be proportionate to the older person’s need. Some services could be provided on the basis of an in-depth assessment of one domain; in other cases it might be necessary to complete an overview assessment followed by in-depth assessments as required; for the most complex (costly) care packages a comprehensive assessment is necessary. The DOH Web site (www.doh.gov.uk/scg/sap/toolsandscales) recommends specific standardized tools to assess these particular domains, all of which meet key criteria (including validity, reliability and cultural sensitivity). These standardized assessments are intended to support, but not replace, professional judgement. In 2004, the DOH completed an evaluation of possible tools to provide the basis of the overview assessment. Here tools had to meet 12 criteria (including user focus, breadth, applicability across settings and professionals). On this basis six tools were accredited (Table 23.8). All draw upon existing validated tools and have electronic versions available or in development. However there are few published data

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in the public domain about any of these at the time of writing. For this reason, the reader is referred to the relevant Web sites for the most up-to-date information.

ASSESSING OUTCOMES Having assessed the person’s needs and developed a care plan, how can we assess whether this has made a difference? Obviously we can monitor change on any specific measures taken at baseline. This would be important, particularly for those measures directly related to the goals of our plan (for example, Mrs X’s wandering or her feelings of loneliness). It is also useful to have a broader measure. In England and Wales, the Health of the Nation targets (Department of Health, 1992) required mental health services to examine the impact of their services upon the health and social function of their service users. Has Mrs X benefited in this broad sense from the services we might offer her? The HoNOS outcome scale was developed (Wing et al., 1998) to provide an index of health and social gain for use by mental health services in general. Burns et al, (1999a,b) describe the HoNOS 65+, a revised version to measure outcome specifically for older patients. This provides a single index, based on clinical ratings of 12 items covering four domains – ‘behaviour’ (challenging behaviour, self-harm and substance abuse); ‘impairment’ (cognitive and physical); ‘symptomatic problems’ (including psychotic symptoms and depression) and ‘social problems’ (covering interpersonal relationships and everyday function). Although the HoNOS scales were intended to monitor outcome rather than identify need, there is obvious overlap with the BRS described above. Turner (2004) reviews 11 studies examining the reliability and validity of the original HoNOS and amended HoNOS 65+ with older patients. She suggests that whilst there is evidence for the reliability of the scales (particularly after training), evidence for their validity or sensitivity to change is less impressive. Studies also suggest that the factorial structure of the scale is inconsistent, suggesting that it is best used to produce a global measure of outcome. The COPM (Law et al., 1990) offers an example of a user-focused measure of outcome in terms of everyday function. Here Mrs X (or her carers) would identify priority targets for intervention and then rate performance and satisfaction levels before and after interventions. This model could be applied easily to other areas to measure directly the impact of services on what matters to the person.

GOING BEYOND COGNITIVE ASSESSMENT There is much more to assessment with older people than the traditional battery of cognitive tests. There are an enormous number of measures of noncognitive functions, many of which were developed or adapted for use with older people, and many assess different realms of function. A comprehensive assessment of Mrs X’s needs (for example, as a basis for a care plan) would require a broad assessment spanning many areas, including cognition, mood, self-care and behaviour, as well as examining her current care supports. This assessment would have to adapt different methods (e.g. self-rating, informant rating, observation of performance) to take account of the different perspectives of Mrs X and her two sons. It would involve many professionals and service agencies. The assessment would probably

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identify particular functions requiring more detailed assessment in order to plan specific interventions. There can be no ‘ideal’ measure or battery of measures that will provide the information required as economically and acceptably as possible in a psychometrically rigorous way. Given the choice of measures available, it is essential that the assessor starts by specifying what information is required and why. Without a clear and reasonable question to be answered, any assessment will be at best useless and at worst an abuse of the older person and the service.

GLOSSARY OF MEASURES ABMI – Agitation Behaviour Mapping Instrument (Cohen- Mansfield et al., 1992). ADL – Index of Activities of Daily Living (Katz et al., 1963). ADLST – ADL Situational Test (Skurla, Rogers & Sunderland, 1988). AWS – Algase Wandering Scale (Algase et al., 2004). B-ADL – Bayer Activities of Daily Living Scale (Hindmarch, Lichfield & Jongh, 1998). BADL – Bristol Activities of Daily Living Scale (Bucks et al., 1996). Barthel – Barthel (Mahoney & Barthel, 1965). BASOLL – Behavioural Assessment Scale of Later Life. (Brooker, 1997; Brooker et al., 1993). BEAM-D – BEAM- D (Sinha et al., 1992). BEHAVE-AD – Behavioural Pathology in Alzheimer’s Disease (Reisberg, Borenstein & Franssen 1987). BRSD – Behavioural Rating Scale for Dementia (Mack et al., 1999). CAPE BRS – Clifton Assessment Procedures for the Elderly: Behaviour Rating Scale (Pattie, 1988; Pattie & Gilleard, 1979). CARE – Comprehensive Assessment & Referral Evaluation (Golden et al., 1984, Teresi et al., 1984). CAT – Cambridgeshire Common Assessment Tool (Howe, 2002). CBS – Challenging Behaviour Scale (Moniz-Cook et al., 2001). CDR – Clinical Dementia Rating (Hughes et al., 1982). CERAD – Cerad Behavioural Rating Scale (Tariot et al., 1995). CMAI – Cohen- Mansfield Agitation Inventory (Cohen-Mansfield, Marx & Rosenthal, 1989). COBRA – Caretaker Obstreperous Behaviour Rating Assessment (Drachman et al., 1992). COPM – Canadian Occupational Performance Measure (Law et al., 1990, 1994). CPT – Cognitive Performance Test (Burns, Mortimer & Merchak, 1994). Crichton – Crichton Geriatric Behavioural Rating Scale (Cole, 1989; Robinson, 1961). CSADL – Cleveland Scale for Activities of Daily Living (Patterson et al., 1992). CUSPAD – Columbia University Scale for Psychopathology in Alzheimer’s Disease (Devanand et al., 1992). DADL – Direct Assessment of Daily Living in Alzheimer’s Disease (Skurla et al., 1988). DAFS – Direct Assessment of Functional Status (Loewenstein et al., 1989). DAQ (OTS) – Daily Activities Questionnaire (Oakley et al., 1991). DBDS – Dementia Behaviour Disturbance Scale (Baumgarten, Becker & Gauthier, 1990). DBRS – Disruptive Behaviour Rating Scale (Mungas et al., 1989). DBRI – Dysfunctional Behaviour Rating Instrument (Molloy et al., 1991).

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DCM – Dementia Care Mapping (Kitwood, 1992; Kitwood & Bredin, 1992). DRS – Dementia Rating Scale (Lawson et al., 1977). DVS – Disruptive Vocalizations Scale (Cohen-Mansfield & Werner, 1997). ECA – Echelle Comportment et Adaptation (Ritchie & Ledesert, 1991). EPAC – Elderly Persons Assessment Checklist (Barrowclough & Fleming, 1986a). FACE – FACE (Elzinga, Meredith & Clifford, 2001). FAQ – Functional Activities Questionnaire (Pfeffer et al., 1982). FAST – Functional Assessment Staging (Reisberg, 1988). FDDS – Feeding Difficulties in Dementia Scale (Watson, 1997). GBS – Gottfries-Brane- Steen Scale (Brane et al., 2000). GDS – Global Deterioration Scale (Reisberg et al., 1982). GRS – Geriatric Rating Scale (Plutchik et al., 1970). HBS – Harmful Behaviours Scale (Draper et al., 2002). IADL – Instrumental Activities of Daily Living (Lawton & Brody, 1969). IAAS – Irritability, Aggression & Apathy Scale (Burns et al., 1990). IDD – Interview for Deterioration in Daily Living Activities (Teunisse & Derix, 1991). INCARE – INCARE (Kay et al., 1991). MAI – Multilevel Assessment Instrument (Lawton et al., 1982). MDS – Minimum Data set for Home Care (Carpenter, Francis & Roberts, 2002; Challis et al., 2000). MMSE – Mini-Mental State Examination (Folstein et al., 1975). MOSES – Multidimensional Observation Scale for Elderly Subjects (Helmes, Csapo & Short, 1987). MOUSEPAD – Manchester & Oxford University Scale for the Psychopathological Assessment of Dementia (Allen et al., 1996). NHBPS – Nursing Home Behaviour Problem Scale (Ray et al., 1992). NOAT – Northamptonshire Overview Assessment Tool. NOSGER – Nurses’ Observation Scale for Geriatric Patients (Tremmel & Spiegel, 1993). NPI – Neuropsychiatry Inventory (Cummings et al., 1994). OARS – Older American Resources & Services Multidimensional Questionnaire (Pfeiffer, 1975). OAS – Overt Aggression Scale (Yudofsky et al., 1986). PADL(E) – Performance Activities of Daily Living (Extended Version) (Kuriansky, Gurland & Fleiss, 1976; MacDonald et al., 1982). PAMIE – Physical and Mental Impairment of Function Evaluation (Gurel, Linn & Linn, 1972). PBE – Present Behavioural Examination (Hope & Fairburn, 1992). PBOI – Patient Behaviour Observation Instrument (Bowie & Mountain, 1993). PSMS – Physical Self-maintenance Scale (Lawton & Brody, 1969). RADL – Refined ADL Assessment Scale (Tappen, 1994). RAGE – Rating of Aggressive Behaviour in the Elderly (Patel & Hope, 1992). RAS – Ryden Aggression Scale (Ryden, 1988). RDRS2 – Rapid Disability Rating Scale-2 (Linn & Linn , 1982). RTC-DAT – Resistiveness to Care Scale (Mahoney et al., 1999). SAILS – Structured Assessment of Independent Living Skills (Mahurin, DeBettignies & Pirozzolo, 1991). SCAG – Sandoz Clinical Assessment Geriatric (Shader, Harmaz & Salzman, 1974).

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SELF – Self Evaluation of Life Function Scale (Linn & Linn, 1984). SOAS – Staff Observation Aggression Scale (Palmerstein & Wistedt, 1987). SOAPD – Observed Agitation in Patients with DAT (Hurley et al., 1999). STEP – Standardized Assessment of Elderly People in Primary Care. (Williams, Fischer & Junius, 2002). STOCKTON – Stockton Geriatric Rating Scale (Meer & Baker, 1966).

REFERENCES Algase, D.L., Beattie, E.R.A., Song, J. et al. (2004) Validation of the Algase Wandering Scale (Version 2) in a cross cultural sample. Aging and Mental Health, 8, 133–42. Allen, N.H.P., Gordon, S., Hope, T. & Burns, A. (1996) Manchester and Oxford Universities Scale for Psychopathological Assessment of Dementia (MOUSEPAD) British Journal of Psychiatry, 169, 293–307. Ashaye, O., Livingston, G. & Orrell, M.W. (2003) Does standardised needs assessments improve the outcome of psychiatric day hospital care for older people? A randomised controlled trial. Aging and Mental Health, 7, 195–9. Ashaye, O., Livingston, G. & Orrell, M. (2004) Identifying and managing the needs of older people attending psychiatric day hospitals. In CANE: Camberwell Assessment of Need for the Elderly. (eds Orrell, M & Hancock, G.). Gaskell, London, pp. 67–74. Audit Commission (2000) Forget Me Not – National Report on Mental Health Services FOR Older People. Audit Commission for local Authorities and National Health Services in England and Wales, London. Ballard, C.G., Chithiramohan, R.N., Handy, S. et al. (1991) Information reliability in dementia sufferers. International Journal of Geriatric Psychiatry, 6, 313–16. Barlow, D.H. & Hersen, M. (1984) Single Case Experimental Designs: Strategies for Studying Behaviour Changes, 2nd edn. Pergamon, New York. Barrowclough, C. & Fleming, I. (1986a) Goal Planning with Elderly People. Manchester University Press. Manchester. Barrowclough, C. & Fleming, I. (1986b) Training direct care staff in goal planning with elderly people. Behavioural Psychotherapy, 14, 192–209. Baumgarten, M., Becker, R. & Gauthier, S. (1990) Validity and reliability of dementia behaviour disturbance scale. Journal of the American Geriatrics Society, 38, 221–6. Bowie, P. & Mountain, G. (1993) Using direct observation to record the behaviour of long-stay patients with dementia. International Journal of Geriatric Psychiatry, 8, 857–64. Bowling , A. (1991) Measuring Health. A Review of Quality of Life Measurement Scales. Open University Press, Milton Keynes. Brane, G., Gottfries, C.G. and Winblad, B. (2000) The Gottfries-Brane Steen scale: validity, reliability and application in anti-dementia drug trails. Dementia and Geriatric Cognitive Disorders, 12, 1–14. Bredin, K., Kitwood, T. & Wattis, J. (1995) Decline in quality of life for patients with sever dementia following a ward merger. International Journal of Geriatric Psychiatry, 10, 967–73. Brewin, C. (1992) Measuring individual needs for care and services. In Measuring Mental Health Needs. (eds G. Thornicroft, C.R. Brewin & J.K. Wing), Gaskell, London, pp. 65–76. Brooker, D. (1997) BASOLL: Behavioural Assessment Scale of Later Life. Speechmark, Bicester, UK. Brooker, D.J.R., Sturmey, P., Gatherer, A.J.H. & Summerbell, C. (1993) The behavioural assessment scale of later life (BASOLL): a description, factor analysis, scale development, validity and reliability data for a new scale for older adults. International Journal of Geriatric Psychiatry, 8, 747–54. Bucks R.S., Ashworth, D.L., Wilcock, G.K. & Siegfried, K. (1996) Assessment of Activities of daily living in dementia. Development of the Bristol Activities of daily living scale. Age and Ageing, 25, 113–120.

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24

Assessing mood, wellbeing and quality of life Bob Woods University of Wales Bangor, Bangor, UK

INTRODUCTION The key issues that arise in evaluating mood, wellbeing and quality of life in older people are essentially those that recur as the distinguishing features of this area of specialism in clinical psychology. These relate to the particular developmental issues of later life, the greater likelihood of physical health difficulties of various kinds and the increased prevalence of cognitive impairment. These factors mean that the assessment instruments that are used routinely with younger adults must be re-evaluated in the context of later life. Assessment of anxiety and depression is an important psychological contribution to the recognition of these common, debilitating conditions. It should also contribute to a psychological understanding and formulation of the person’s difficulties and their severity and provide a means of monitoring response to therapeutic intervention. However, in clinical psychology practice, evaluating wellbeing and quality of life has become increasingly important, with a recognition that these constructs do not simply imply an absence of depression and anxiety but reflect individuals’ appraisals of their life in the context of their current situation, including their future aspirations and fears, as well as past achievements and disappointments. Certain aspects of the psychology of ageing were a precursor of the development of ‘positive psychology’ (Sheldon & King 2001), emphasizing the factors leading to satisfaction with life and adjustment, with indices of life satisfaction appearing in the gerontological literature in the 1960s (Adams, 1969). More recently there has been massive interest in the development of methods for assessing quality of life across all age groups and the whole range of health conditions. In part, this has been fuelled by the pursuit of ‘happiness’ and the promotion by the World Health Organisation of a notion of health that is more than the absence of illness and disease, but reflects a positive state of physical, mental and social wellbeing. However, it may also arise from a recognition that many of the major health conditions that have so far resisted the advances in medical science and public health are chronic conditions, where a cure is not possible, and the person is faced with living with the condition and its effects. Here the person’s quality of life, in living Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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with the condition, becomes the outcome of importance. This has particular implications in considering the assessment of quality of life and wellbeing in the context of cognitive impairment. There have been major developments in the acceptance of self-report measures of quality of life for people with dementia, as presenting a reliable and valid representation of the person’s situation; evidence on this will be presented later in this chapter. This chapter focuses on formal assessment of these important areas although it would be impossible to provide a comprehensive account of the plethora of scales and instruments available. Examples will be given of the available measures that illustrate the central issues and the choices to be made in selecting an appropriate means of assessment. However, it must be emphasized at the outset that, in the clinical context, standard measures are not a substitute for sensitive clinical interviewing. They allow comparisons to be made over time, or with normative values from appropriate populations, but it is in the interview that responses and meanings can be elaborated and explored, where verbal and nonverbal communication can be integrated and where an in-depth psychological understanding of the person can be attempted. Well chosen measures may complement the clinical interview but they cannot replace it. Before discussing the distinct areas of wellbeing/quality of life and mood, two overarching issues relevant to self-report measures in both areas will be considered.

PRESENTATION At first sight it might seem obvious that any measure to be given to the older person for selfcompletion must be presented in such a way that sensory or language or motor or cognitive difficulties do not prevent the person responding accurately. Exactly the same consideration applies, of course, to a person of any age but with younger clients, more often than not, the client adapts to the poor presentation. With older people, if the psychologist does not take the initiative and adapt the materials, problems are much more likely to ensue. With self-report questionnaires, the layout, response format, font type, font size and font colour will all be relevant. If clients cannot complete the form themselves and the questionnaire is to be read out to them, it is often useful to have a laminated card with the response scale clearly printed, so the appropriate response can be indicated. Particularly where a scale has been developed in a different country or culture, care should be taken to watch out for words and expressions that may be unfamiliar or difficult for the person to understand. Careful selection of measures can help to avoid overloading a person with limited working memory with too many response options, which result in the person having lost track of the original question by the time they have read, say, the five response options.

SELF-REPORT COMPLETED BY A PROXY Especially when seeking to assess the mood and wellbeing of a person with cognitive impairment, it appears sensible to ask someone who knows the person well to provide information, from their observation and knowledge of the person. In many instances, the informant is a close relative, typically a spouse or adult child and the informant is, in fact, asked to act as a ‘proxy’ and complete the questionnaire from the perspective of the cognitively impaired person. It might be expected that informants would have more

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difficulty commenting on the person’s thoughts and feelings rather than on their functional abilities and behaviour (e.g. Novella et al., 2001), and a number of studies have examined the extent to which a relative, typically a caregiver, is able to give valid ratings of mood and quality of life. Logsdon and Teri (1995) used a variety of measures of depression, completed by caregivers of people with dementia and validated their ratings against measures that included an interview with the person with dementia. Their findings supported the validity of the caregiver reports and they concluded that caregivers of people with dementia ‘are able to act as surrogate reporters of depression’. Teri and Truax (1994) reach a similar conclusion based on caregivers rating the level of depression of a person presented on videotape. However, when they rated the level of depression of their own relative, there was a moderate association between their own mood and their rating, which may, of course, reflect comorbidity of depressed mood between caregivers and care-recipients. There is stronger evidence that quality of life ratings are influenced by the caregiver’s level of perceived burden and mood. For example, Karlawish et al. (2001) examined the agreement between the caregiver’s own rating (on a five-point global scale) of the quality of life of the person with dementia and the caregiver’s substituted judgement – what they think the person would say him/herself. In nearly half the sample, the two ratings were different; caregiver depression and burden were associated with lower caregiver ratings of the person’s quality of life. Direct comparisons of caregiver ratings of the person’s quality of life, in five domains, and ratings made by the person with dementia him/herself are reported by Sands et al. (2004). Caregivers who were experiencing a greater sense of burden rated the quality of life of the person with dementia lower than did the person with dementia, across all five domains. A similar finding in relation to caregivers looking after a person who had had a stroke is reported by Williams et al. (2006). Proxy reports by family members were consistently lower than those of the person who had had a stroke, across a number of domains of health-related quality of life. Disagreement was greater where the proxy perceived their own burden to be greater. Overall, these findings suggest that wherever possible self-report should be sought from the person himself/herself and, although caregiver ratings can provide a useful, distinct, perspective, the effects of the caregiver’s own sense of burden and lowered mood should be taken into account (Addington-Hall & Kalra, 2001).

ASSESSING WELLBEING AND QUALITY OF LIFE The movement towards evaluating positive health, in a broad sense, and wellbeing has led to several directions of development; these recognize that measures of depression and low mood are essentially rooted in the discrimination of ‘clinical’ states from ‘normal’, rather than differentiating varying degrees of wellbeing, satisfaction and contentment. At a basic level, measures of positive affect have been used, such as Bradburn’s Affect Balance Scale (Kempen, 1992). In a sample of people aged over 90, Hilleras et al. (1998) found that the positive and negative affect scales showed little correlation, in line with the conclusion drawn by Okun and Stock (1987) that positive and negative affect are distinct components of subjective wellbeing.

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The evaluation of life satisfaction has a long tradition in gerontology and provides a more comprehensive evaluation of wellbeing but in recent years there has been a massive growth in interest in evaluating quality of life. Defining quality of life has, perhaps understandably, proved challenging. Bond (1999, p. 566) argues: ‘It is a multidimensional concept which has no clear or fixed boundary. There is little agreement about what constitutes the individual “domains” of quality of life; about the standard for each “domain” . . . or who determines the relevance of each “domain” to the individual.’ The domains may include social, physical and psychological aspects and Lawton (1997) suggests that many aspects may be assessed objectively. This may be achieved, he suggested, for example, through the use of measures of environmental quality, activity of daily living scales etc. However, the subjective component cannot be neglected: Brod et al. (1999) and Windle and Woods (2004) are amongst many who emphasize that people’s subjective appraisal of their situation mediates objective circumstances into experienced life quality. Skevington (2002, p. 136) offers the definition adopted by the WHO-QOL Group: ‘an individual’s perceptions of their position in life, in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.’ Whilst there is agreement that the subjective component is essential, there is debate regarding the extent to which the assessment framework should allow the person to identify the domains that are relevant and important to the individual. Bond (1999) argues that the phenomenological approach, where the person defines the areas most significant for his/her life quality, is important in the context of lifespan development, with each individual developing on a unique trajectory, diverging from the peer group; current quality of life is inextricably influenced by a life history of experiences and maturation. Phenomenological approaches do allow patterns of individual change in quality of life to be evaluated, and have great clinical utility. However, they do not lend themselves to a normative, standardized approach, which allows comparisons between individuals and groups and has been favoured in many research studies. A further debate relates to the use of health-related quality of life measures, rather than measures of global wellbeing. By focusing on those aspects of life quality that could be influenced by a healthcare intervention, these measures perhaps provide a more realistic outcome measure. Carr et al. (2001, p. 1240) emphasize the importance of the person’s expectations, defining health-related quality of life as ‘the gap between our expectations of health and our experience of it’. However, as Bond (1999) points out, health and social circumstances are interwoven, perhaps especially so in older people and those with chronic health difficulties. A further complication is that well established measures of health status (e.g. the SF-36, Hayes et al., 1995) have been relabelled as health-related quality of life measures, although not originally designed as such. There has also been a trend to develop disease-specific measures; for example, for stroke, these include the Stroke-Specific Quality of Life (SS-QOL) (Williams et al., 2006); for Parkinson’s the PDQ-39 (Schrag, Jahanshahi & Quinn, 2000); for dementia, the QoL-AD (Logsdon et al., 1999). This is in part because generic measures are considered not to capture the key aspects of the impact of the specific condition on the individual affected. These considerations have led to the development of well over 1,000 measures of quality of life (Thorgrimsen et al., 2003). Here, the focus will be on a few of the measures developed for use with people with dementia, after a brief review of selected measures available for older people in general and for caregivers.

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Older People without Cognitive Impairment Several self-report ‘life-satisfaction’ and ‘morale’ scales have been developed specifically for older people. Among those widely used over the years have been the Philadelphia Geriatric Center Morale Scale (Lawton, 1975) and the Life Satisfaction Index, which is available in a number of forms (Twining, 1990) including the brief version described by Bigot (1974). This has eight items on two sub-scales ‘acceptance-contentment’ and ‘achievementfulfilment’. Gilleard et al., (1981) suggest that the latter sub-scale reflects a more stable attitudinal component of morale, based on past life achievements and experiences. There is increasing interest in the evaluation of health-related quality of life as a means of evaluating health care interventions. A number of approaches are possible (see Bowling, 1997), including the SF-36 (and its briefer derivative, the SF-12), a questionnaire that has been used in older populations (Hayes et al., 1995; Murray, Lefort & Ribeiro, 1997), and includes physical and mental health components. In relation to generic quality of life measures, the WHOQOL has been the subject of much cross-cultural work, and has been augmented for use with older people (Power, Quinn & Schmidt, 2005). Interestingly, the 100-item WHOQOL-100, a self-report measure that covers 25 facets across six domains, did not cover all the key areas for older people, and the WHOQOL-Old module provides an additional 24 items, covering six facets. If 124 items appears too great, the WHOQOL-Old module can also be combined with the WHOQOL-Bref, which has 26 items, in the domains of physical, social, psychological and environmental life quality. Health-related quality of life may be assessed using the EUROQol, a brief five-item scale that is easily completed and has been used extensively with older people to evaluate health outcomes. For example, Tidermark and Bergstrom (2007) report it was a useful outcome measure in older people who had had femoral neck fractures, and performed well in comparison with a health status measure, the Nottingham Health Profile. The phenomenological approach is represented by the Schedule for the Evaluation of Individual Quality of Life (SEIQOL) (O’Boyle et al., 1992), where the person chooses five areas of life most important to them, and rates the quality of life experienced in each area.

Carers The emphasis in the caregiver literature has been on negative aspects of the experience, with the Zarit Burden Scale (Schreiner et al., 2006) the most commonly used measure of the specific impact of the care-giving experience. Other measures of negative effects have included the Relatives Stress Scale (Agar et al., 1997) and measures which evaluate the impact of specific behaviours of the care recipient on the caregiver, such as the Problem Check List (Agar et al., 1997) or the Neuropsychiatric Inventory (Cummings, 1997). Measures of positive aspects of caregiving are now being developed (for example, Rapp & Chao, 2000). Andren and Elmstahl (2005), using the Caregiver’s Assessment of Satisfactions Index, found that satisfaction and burden could coexist, and may reflect different aspects of the caregiving situation. Some examples of the use of generic health-related quality of life measures with caregivers are emerging, for example Markowitz et al. (2003) used the SF-12 with a large sample

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of over 2,000 caregivers of people with dementia to evaluate the factors predicting quality of life in caregivers.

Older People with Cognitive Impairment Jonker et al. (2004) identify subjective wellbeing as the key aspect of quality of life for people with dementia. In recent years, it has been established that people with mild to moderate dementia are able to complete self-report quality of life scales (in an interview context), and numerous scales have been validated for this purpose such as the Dementia Quality of Life Instrument (DQoL) (Brod et al., 1999); Quality of Life in Alzheimer’s Disease (QoL-AD) (Logsdon et al., 2002; Thorgrimsen et al., 2003), the DEMQOL (Smith et al., 2006) and the Quality of Life Assessment Schedule (QOLAS) (Selai & Trimble, 1999). The latter scale is notable for its attempt to offer the person some choice over the aspects to be included; the SEIQOL proved too cognitively complex for all but the most mildly impaired people with dementia to complete (Coen et al., 1993). The QOL-AD (Logsdon et al., 1999) is a simple self-report measure of quality of life, with 13 items, each rated by the person on a four-point scale, in the course of an interview. The items include Energy; Fun; Money; Physical health; Friends; Family, etc. The domains included have been validated from focus groups with people with dementia and caregivers and through questionnaires completed by professionals working in the dementia care field (Thorgrimsen et al., 2003). The measure shows good internal consistency and good retest reliability over a period of one week; it does appear that people with dementia can give a reliable and consistent account of their quality of life. The validity of their reports is supported by a moderate association with observed wellbeing scores from Dementia Care Mapping (Thorgrimsen et al., 2003). Studies consistently report that low scores on the QoLAD are associated with low mood but not to level of cognitive function (Hoe et al., 2005) and, of the numerous scales developed, it appears to be the most feasible for self-report in people with moderate to severe dementia (Hoe et al., 2005), being used successfully with people with scores as low as 3/30 on the Mini-Mental State Examination (Folstein, Folstein & McHugh, 1975). The 28-item DEMQOL appears to be a promising measure, and also does not show a significant association with the person’s cognitive functioning (Banerjee et al., 2006). The use of proxy measures has been discussed previously and scales such as QoL-AD can be completed by family members or care staff. Ready, Ott and Grace (2006) suggest that proxy reports provide a distinct perspective, with agreement between proxy ratings and self-report not good even where people with dementia had a high level of insight into their situation. Observational measures, such as Dementia Care Mapping (DCM) (Brooker, 2005; see also Chapter 23, this volume) are an option with people with more severe dementia, using the wellbeing scores that the observer rates at the end of each five-minute observation period. There is debate as to whether DCM evaluates quality of life or quality of care, although the two aspects approach each other as severity of impairment increases, and there is some evidence for its validity as a quality of life measure (Woods & Lintern, 2003).

ASSESSING MOOD The major concern in simply applying depression and anxiety scales that have been developed for use with younger people is the inclusion of items that may have a different

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significance and meaning with an older population (or indeed a population with multiple physical health difficulties) (see also Chapter 6, this volume). For example, items regarding difficulty in sleeping or becoming tired more easily may reflect maturational changes rather than mood; not wanting to go out and do new things may indicate adaptation and contentment rather than depression in a person in late life. Anxiety scales may not cover the major fears of later life, such as falling or symptoms of ‘anxiety’ may relate to chronic conditions with which the person is living. These considerations have led to the development of some scales specifically geared towards an older population, or towards people in hospital settings. In addition, there has been a great deal of interest in assessing mood disorders in the context of dementia, again with some specific tools becoming available. It is important in using all these measures, even those developed specifically for older people, to evaluate carefully the person’s responses and consider whether low mood is the reason for an item being rated in the negative direction. Reliance simply on total scores, without this qualitative appraisal, can be misleading in the clinical context.

Older People Without Cognitive Impairment Despite being designed for younger people, there is some evidence that the Beck Depression Inventory (BDI) is useful and reliable as a clinical screening instrument (Gallagher, Nies & Thompson, 1982; see also Chapter 6, this volume). The Geriatric Depression Scale (GDS) (Montorio & Izal, 1996; Yesavage, Brink & Rose, 1983) has a simpler response format (Yes/No) than the BDI, and is now extensively used as a self-report measure for depression in older people, including a representative sample of over 14,000 people over 75 in the UK (Osborn et al., 2002). Although the forced-choice response format reduces the load on working memory for its completion, some older people, understandably, find it difficult to be so definite regarding complex emotions and would clearly prefer a middle option at times. O’Neill et al. (1992) suggest that this scale is more effectively administered by a rater, in an interview format, rather than being given to the older person to complete. This certainly provides the opportunity to explore some of the reasons behind specific responses. Thus older people may explain, for example, that they have indeed given up interests and activities recently; perhaps they did a lot of needlework and now they have cataracts developing, preventing them continuing with this. The original scale had 30 items but a 15 item short-form is more than adequate (Sheikh & Yesavage, 1986; Herrmann et al., 1996). In fact, a number of even briefer forms have been reported, for example with 12 and 10 items (Jongenelis et al., 2005) and even four- and one-item versions have been evaluated (Almeida & Almeida, 1999) although those briefer than 10 items appear to lack satisfactory reliability. Alternatives include the SELFCARE (D) scale, which has been developed as a 12-item self-report measure for use in primary care settings (Bird et al., 1987) and the BASDEC, which comprises 19 items, each presented individually in easy-to-read letters on cards, with a forced-choice True/False response format (Loke, Nicklason & Burvill, 1996). It was suggested that this is more user-friendly than the GDS, and performed well as a screening measure for depression. The Hospital Anxiety and Depression Scale (HADS) (Flint & Rifat, 1996; Kenn et al., 1987) allows a structured assessment of anxiety as well as depression, an aspect not addressed specifically by most of the available scales. Although not designed specifically

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for older people, it has been widely used with populations with a variety of health problems (for example, cardiac problems – Roberts et al., 2001). Flint and Rifat (2002) confirm the two factor structure of the HADS, with both the depression and anxiety scales having high internal reliability. It is relatively brief, with seven depression and seven anxiety items, each with four, brief response options. A number of observer-rated scales are available (see Montgomery, 1988), which may assist in overcoming some of the problems inherent in self-report measures with older people (such as visual acuity problems, inappropriateness of items and so forth). These are typically completed following a clinical interview with the person, and have been used as the ‘gold-standard’ in validating the self-report measures already described. These include the Montgomery-Asberg Depression Rating Scale (MADRS) (see, for example, Herrmann et al., 1996) and the Hamilton Depression Rating Scale (see, for example, Yesavage, Brink & Rose, 1983).

Caregivers Depression in family caregivers may, of course, be evaluated with any of the available self-report measures (see Brodaty, 2007); although many caregivers will be older people, typically the age-range is such that a generic scale would be used rather than the GDS, for example. Psychological distress may be evaluated, separately from the caregiver’s reactions to the person with dementia, using the General Health Questionnaire (GHQ) (Goldberg, 1978). This can be used as a screening measure, or as a measure of change, by using different scoring systems. A number of versions are available, including a brief 12-item scale, the GHQ-12. For some purposes, the 28-item version (GHQ-28) is preferred as it gives four subscale scores, including depression, social disturbance, anxiety and somatic symptoms (Goldberg & Hillier, 1979). Mahoney et al. (2005) draws attention to the importance of assessing anxiety as well as depression, with caregivers living with a person with dementia at home being more likely to be anxious than depressed; the HADS appears to be a good measure for this purpose.

Older People with Cognitive Impairment For the assessment of people with cognitive impairment for mood disturbance, where selfreport may not be possible, several dementia-specific observer-rated depression scales have been developed. These include the Depressive Signs Scale (Katona & Aldridge, 1985), the Cornell Scale for depression in dementia (CSDD) (Alexopoulos et al., 1988) and the Dementia Mood Assessment Scale (Sunderland et al., 1988). The CSDD is completed from all available information, including an interview with the caregiver and the person with dementia, and has become the preferred mood measure in this field. It emerges well from comparative studies with the GDS and other depression measures, performing at least as well as the Hamilton Depression Scale (Vida et al., 1994; Mayer et al., 2006) and the Montgomery-Asberg Depression Scale (Muller-Thomsen et al., 2005). It has proved sensitive to change in treatment studies, and its psychometric properties have been studied in various populations, although there is some debate about the use of its subscales (Harwood

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et al., 1998). The Rating of Anxiety in Dementia (Shankar et al., 1999) is an observer-rated index of anxiety in dementia, completed in similar fashion to the CSDD, which appears a promising scale, although it has yet to be widely used. Self-report of mood is, of course, possible for many people with dementia, and Ott and Fogel (1992) suggested that the GDS could be used with people with mild dementia. However, the validity of using the GDS with people with dementia has been the subject of much controversy. In a review of the scale, Montorio and Izal (1996) suggest that it fails to identify depression in people with dementia and may be invalid because individuals are unable to recall their feelings over the past week as the instructions require. Bedard et al. (2003) report that people with moderate dementia show a more positive response set bias, and that their scores at retest show a lower correlation. Muller-Thomsen et al. (2005) indicate that the internal consistency of the GDS-15 was also reduced as dementia severity increased. McCabe et al. (2006) conclude that whereas, like other depression measures, the GDS-15 performed slightly less well when used with people with moderate dementia, it was still an appropriate instrument to use with this population. Snow et al. (2005) indicate that ‘deficit awareness’, a broad measure of people’s ability to report their limitations and abilities accurately, accounted for much of the discrepancy between self-report and informant-reports on the GDS-30, in people with and without dementia. Where awareness is limited, there are greater discrepancies in comparison with informant reports, with the person with dementia under-reporting depression. There is, however, some evidence that people with dementia with greater awareness tend to be more likely to be depressed (Clare, 2004). It is not clear that the GDS-15 is the best short-form to use with people with dementia. Sutcliffe et al. (2000) have developed the GDS-12R, by omitting three items that appear to reduce the validity of the GDS-15 in samples of people with significant cognitive impairment (for example ‘do you feel your memory is worse than most people’s?’). The HADS has been rarely used with people with dementia, and is probably mainly appropriate in early dementia (Clare et al., 2002), in view of its four-choice response format. In summary, the CSDD appears to be the optimal measure of mood in dementia. However, there is a good argument for the additional use of a self-report measure, such as the GDS, for monitoring change, whilst recognizing it should not be used on its own to diagnose depression in people with dementia.

CONCLUSION Clinicians now have a great choice of measures available to use with older people, particularly in the quality of life domain. Careful selection of measures and good clinical judgement in interpreting scores obtained is as vital in working with older people as in any other area of clinical psychology, if not more so. The move toward assessment of both positive and negative aspects is timely, and there is certainly scope for more work in this area in relation to the experience of caregiving and of the experience of wellbeing in dementia. The acceptance of self-report of quality of life by people with dementia has been a major step forward in recognizing the voice and perspective of people with dementia and would probably have been unthinkable even in the late 1980s.

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Gallagher, D., Nies, G. & Thompson, L.W. (1982) Reliability of the Beck Depression Inventory with older adults. Journal of Consulting & Clinical Psychology, 50, 152–3. Gilleard, C.J., Willmott, M. & Vaddadik, S. (1981) Self report measures of mood and morale in elderly depressives. British Journal of Psychiatry, 138, 230–5. Goldberg, D. (1978) Manual of the General Health Questionnaire. Windsor: NFER-Nelson. Goldberg, D.P. & Hillier, V.F. (1979) A scaled version of the General Health Questionnaire. Psychological Medicine, 9, 139–45. Harwood, D.G., Ownby, R.L., Barker, W.W. & Duara, R. (1998) The factor structure of the Cornell Scale for Depression in Dementia among probable Alzheimer’s disease patients. American Journal of Geriatric Psychiatry, 6, 212–20. Hayes, V., Morris, J., Wolfe, C. & Morgan, M. (1995) The SF-36 health survey questionnaire: is it suitable for use with older adults? Age and Ageing, 24, 120–5. Herrmann, N., Mittmann, N., Silver, I.L. et al. (1996) A validation study of the Geriatric Depression Scale short form. International Journal of Geriatric Psychiatry, 11, 457–60. Hilleras, P.K., Jorm, A.F., Herlitz, A. & Winblad, B. (1998) Negative and positive affect among the very old. Research on Aging, 20, 593–610. Hoe, J., Katona, C., Roch, B. & Livingston, G. (2005) Use of the QOL-AD for measuring quality of life in people with severe dementia–the LASER-AD study. Age & Ageing, 34, 130–5. Jongenelis, K., Eisses, A.M.H., Gerritsen, D.L. et al. (2005) Diagnostic accuracy of the original 30-item and shortened versions of the Geriatric Depression Scale in nursing home patients. International Journal of Geriatric Psychiatry, 20, 1067–74. Jonker, C., Gerritsen, D.L., Bosboom, P.R. & Van-der-Steen, J.T. (2004) A model for quality of life measures in patients with dementia: Lawton’s next step. Dementia and Geriatric Cognitive Disorders, 18, 159–64. Karlawish, J.H.T., Casarett, D., Klocinski, J. & Clark, C.M. (2001) The relationship between caregivers’ global ratings of Alzheimer’s disease patients’ quality of life, disease severity, and the caregiving experience. Journal of American Geriatrics Society, 49, 1066– 70. Katona, C.L.E. & Aldridge, C.R. (1985) The dexamethasone suppression test and depressive signs in dementia. Journal of Affective Disorders, 8, 83–9. Kempen, G. (1992) Psychometric properties of Bradburn’s Affect Balance Scale among elderly persons. Psychological Reports, 70, 638. Kenn, C., Wood, H., Kucyj, M. et al. (1987) Validation of the Hospital Anxiety and Depression Rating Scale (HADS) in an elderly psychiatric population. International Journal of Geriatric Psychiatry, 2, 189–93. Lawton, M.P. (1975) The Philadelphia Geriatric Center Morale scale: a revision. Journal of Gerontology, 30, 85–9. Lawton, M.P. (1997) Assessing quality of life in Alzheimer Disease Research. Alzheimer Disease & Associated Disorders, 11(Supplement 3), 91–9. Logsdon, R., Gibbons, L.E., McCurry, S.M. & Teri, L. (1999) Quality of life in Alzheimer’s disease: patient and caregiver reports. Journal of Mental Health and Aging, 5, 21–32. Logsdon, R. & Teri, L. (1995) Depression in Alzheimer’s disease patients: caregivers as surrogate reporters. Journal of American Geriatrics Society, 43, 150–5. Logsdon, R.G., Gibbons, L.E., McCurry, S.M. & Teri, L. (2002) Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510–19. Loke, B., Nicklason, F. & Burvill, P. (1996) Screening for depression: clinical validation of geriatricians’ diagnosis, the Brief Assessment Schedule Depression Cards and the 5-item version of the Symptom Check List among non-demented geriatric in-patients. International Journal of Geriatric Psychiatry, 11, 461–5. Mahoney, R., Regan, C., Katona, C. & Livingston, G. (2005) Anxiety and depression in family caregivers of people with Alzheimer disease. American Journal of Geriatric Psychiatry, 13, 795– 801. Markowitz, J.S., Gutterman, E.M., Sadik, K. & Papadopoulos, G. (2003) Health-related quality of life for caregivers of patients with Alzheimer disease. Alzheimer Disease and Associated Disorders, 17, 209–214.

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Mayer, L.S., Bay, R.C., Politis, A. et al. (2006) Comparison of three rating scales as outcome measures for treatment trials of depression in Alzheimer’s disease: findings from DIADS. International Journal of Geriatric Psychiatry, 21, 930–6. McCabe, M., Davison, T., Mellor, D. et al. (2006) Depression among older people with cognitive impairment: prevalence and detection. International Journal of Geriatric Psychiatry, 21, 633–44. Montgomery, S.A. (1988) Measuring mood, in Psychological Assessment of the Elderly (eds J.P. Wattis & I. Hindmarch). Churchill Livingstone, Edinburgh, pp. 138–50. Montorio, I. & Izal, M. (1996) The Geriatric Depression Scale: a review of its development and utility. International Psychogeriatrics, 8, 103–12. Muller-Thomsen, T., Arlt, S., Mann, U. et al. (2005) Detecting depression in Alzheimer’s disease: evaluation of four different scales. Archives of Clinical Neuropsychology, 20, 271–6. Murray, M., Lefort, S. & Ribeiro, V. (1997) The SF-36: reliable and valid for the institutionalized elderly? Aging & Mental Health, 2(1), 24–7. Novella, J.L., Jochum, C., Morrone, I. et al. (2001) Agreement between patients’ and proxies’ reports of quality of life in Alzheimer’s disease. Quality of Life Research, 10, 443–52. O’Boyle, C., McGee, H.M., Hickey, A. et al. (1992) Individual quality of life in patients undergoing hip replacement. Lancet, 339, 1088–91. Okun, M. & Stock, W.A. (1987) Correlates and components of subjective wellbeing among the elderly. Journal of Applied Gerontology, 6, 95–112. O’Neill, D., Rice, I., Blake, P. et al. (1992) The geriatric depression scale: rater-administered or self-administered. International Journal of Geriatric Psychiatry, 7, 511–15. Osborn, D.P.J., Fletcher, A.E., Smeeth, L. et al. (2002) Geriatric Depression Scale scores in a representative sample of 14,545 people aged 75 and over in the United Kingdom: results from the MRC Trial of Assessment and Management of Older People in the Community. International Journal of Geriatric Psychiatry, 17, 375–82. Ott, B.R. & Fogel, B.S. (1992) Measurement of depression in dementia: self versus clinician rating. International Journal of Geriatric Psychiatry, 7, 899–904. Power, M., Quinn, K. & Schmidt, S. (2005) Development of the WHOQOL-Old module. Quality of Life Research, 14, 2197–214. Rapp, S.R. & Chao, D. (2000) Appraisals of strain and gain: effects on psychological wellbeing of caregivers of dementia patients. Aging & Mental Health, 4, 142–7. Ready, R.E., Ott, B.R. & Grace, J. (2006) Insight and cognitive impairment: effects on quality of life reports from mild cognitive impairment and Alzheimer’s Disease patients. American Journal of Alzheimer’s Disease and Other Dementias,21, 242–8. Roberts, S.B., Bonnici, D.M., Mackinnon, A.J. & Worcester, M.C. (2001) Psychometric evaluation of the Hospital Anxiety and Depression Scale (HADS) among female cardiac patients. British Journal of Health Psychology, 6, 373–83. Sands, L.P., Ferreira, P., Stewart, A.L. et al. (2004) What Explains Differences Between Dementia Patients’ and Their Caregivers’ Ratings of Patients’ Quality of Life? American Journal of Geriatric Psychiatry, 12, 272–80. Schrag, A., Jahanshahi, M. & Quinn, N. (2000) What contributes to quality of life in patients with Parkinson’s disease? Journal of Neurology, Neurosurgery & Psychiatry, 69, 308–12. Schreiner, A.S., Morimoto, T., Arai, Y. & Zarit, S.H. (2006) Assessing family caregiver’s mental health using a statistically derived cut-off score for the Zarit Burden Interview. Aging and Mental Health, 10, 107–11. Selai, C. & Trimble, M.R. (1999) Assessing quality of life in dementia. Aging and Mental Health, 3(2), 101–11. Shankar, K.K., Walker, M., Frost, D. & Orrell, M.W. (1999) The development of a valid and reliable scale for rating anxiety in dementia (RAID) Aging & Mental Health, 3(1), 39–49. Sheikh, J.I. & Yesavage, J.A. (1986) Geriatric Depression Scale (GDS): recent evidence and development of a shorter version, in Clinical Gerontology: A Guide to Assessment and Intervention (ed. T.L. Brink). Haworth Press, New York, pp. 165–73. Sheldon, K.M. & King, L. (2001) Why positive psychology is necessary. American Psychologist, 56, 216–17. Skevington, S.M. (2002) Advancing cross-cultural research on quality of life: observations drawn from the WHOQOL development. Quality of Life Research, 11, 135–44.

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Smith, S.C., Lamping, D.L., Banerjee, S. et al. (2006) Development of a new measure of health-related quality of life for people with dementia: DEMQOL. Psychological Medicine, 37, 737–46. Snow, A.L., Kunik, M.E., Molinari, V.A. et al. (2005) Accuracy of self-reported depression in persons with dementia. Journal of American Geriatrics Society, 53, 389–96. Sunderland, T., Alterman, I.S., Yount, D. et al. (1988) A new scale for assessment of depressed mood in demented patients. American Journal of Psychiatry, 145, 955–9. Sutcliffe, C., Cordingley, L., Burns, A. et al. (2000) A new version of the Geriatric Depression Scale for nursing and residential home populations: The Geriatric Depression Scale (Residential) (GDS-12R) International Psychogeriatrics, 12, 173–81. Teri, L. & Truax, P. (1994) Assessment of depression in dementia patients: association of caregiver mood with depression ratings. Gerontologist, 34, 231–4. Thorgrimsen, L., Selwood, A., Spector, A. et al. (2003) Whose quality of life is it anyway? The validity and reliability of the Quality of Life–Alzheimer’s Disease (QoL-AD) Scale. Alzheimer Disease and Associated Disorders, 17(4), 201–8. Tidermark, J. & Bergstrom, G. (2007) Responsiveness of the EuroQol (EQ-5D) and the Nottingham Health Profile (NHP) in elderly patients with femoral neck fractures. Quality of Life Research, 16, 321–30. Twining, C. (1990) Assessment of personal adjustment, in Assessment of the elderly (eds J.R. Beech & L. Harding). NFER-Nelson, Windsor, pp. 87–99. Vida, S., DesRosiers, P., Carrier, L. & Gauthier, S. (1994) Depression in Alzheimer’s disease: receiver operating characteristic analysis of the Cornell Scale for Depression in Dementia and the Hamilton Depression Scale. Journal of Geriatric Psychiatry Neurology, 7, 159–62. Williams, L., Bakas, T., Brizendine, E. et al. (2006) How valid are family proxy assessments of stroke patient’s health-related quality of life? Stroke, 37, 2081–5. Windle, G. & Woods, R.T. (2004) Variations in subjective wellbeing: the mediating role of a psychological resource. Ageing & Society, 24, 583–602. Woods, B. & Lintern, T. (2003) The reliability and validity of dementia care mapping, in Dementia Care Mapping: Applications Across Cultures (ed. A. Innes). Health Professions Press, Baltimore, pp. 25–38. Yesavage, J.A., Brink, T.L. & Rose, T.L. (1983) Development and validation of a geriatric depression scale: a preliminary report. Journal of Psychiatric Research, 17, 37–49.

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Capacity and consent: empowering and protecting vulnerable older people Charles Twining Cardiff, UK

INTRODUCTION The risk of suffering deterioration in mental capacity and thus the ability to understand and interact effectively with the world around us is one of the most significant challenges facing older people and their families. We have thankfully moved beyond thinking that such decline, as embodied in the term ‘senile dementia’, is caused by, or is in some way an inevitable consequence of, normal ageing. Attitudes have improved but of course dementias are still real illnesses and together with the effects of stroke or other diseases do cause mental decline in a significant proportion of older people. Part of the attitude shift has also been towards the consideration of ‘rights’, for example as laid down in the European Convention on Human Rights. From a professional perspective these remind us of our responsibilities to empower those we help to live full and autonomous lives. However it is na¨ıve not to recognize that some people have real problems in making their own decisions. There is a danger that in some cases a desire to respect an individual’s choice can serve as an excuse to neglect their own or their family’s wellbeing. The need for an appropriate balance is well recognized in relation to consent to treatment. In those cases where treatment is elective and time permits there are clear guidelines for obtaining consent. However in situations of urgent necessity patient consent is not required. This deals well with most situations including those where the patient may be unconscious. More rarely consent may be much more contentious and the approach to be taken depends on the determination of capacity. As I shall argue, there are particular reasons why this is a special challenge in working with older people and their families. Although the essential components are just the same as with other client groups such as those with a learning disability or with brain injury, the way these can occur in later life is different and therefore those working with older

Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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people have to respond in an age-appropriate way. This chapter therefore sets down some of the key principles that apply and the practical challenges that face those dealing with consent and capacity issues in older people. There is some consideration of the current legal background, especially as it applies to the changing law in the UK. Finally there are some suggestions for practical guidance and ways to develop good practice both now and in the future.

KEY PRINCIPLES As recent guidance has made clear (Department for Constitutional Affairs, 2007; BPS (PPB) 2006), there is a general preference for a functional rather than a diagnostic approach to the evaluation of mental capacity. Thus simply being diagnosed as suffering from Alzheimer’s disease does not in itself automatically imply that someone is unable to make a decision. This has been tested in law. Likewise there is clear recognition of the fact that sometimes people make unwise decisions and they should be free to do so provided these do not impact on the wellbeing of others. The decision to smoke tobacco is almost without exception unwise but we do not label people as mentally incapacitated if they do so. In general, psychological theory and practice are consistent with a functional approach. Indeed some psychological models such as behaviourism might be argued as taking this to extremes. Certainly the focus on individual differences and on external and internal determinants of behaviour sits well with a functional approach. There is also in law a general presumption that adults are competent to make decisions unless or until it can be shown otherwise. In the case of older people this is exactly the correct starting point. Whereas those with severe developmental delay may never have achieved full mental capacity and autonomy, growing older for the great majority of people means having achieved a long period of capacity and autonomy. Thus any judgement that an older person is not capable of making a decision is one that s/he is no longer capable of that decision. There must by definition have been some change and a functional evaluation should certainly include what has changed and preferably offer at least some hypothesis as to why. This is consistent with the notion of lifespan development and sees every older person in the context of his or her life thus far. It means seeking to understand what would be their individual pattern of choices and other behaviours. This may well include unwise choices but keeps the focus very much on the individual and the type of decision required. Evaluation of function must also allow for change as well as consistency. Someone may have made different decisions at different times and this has also to be factored into an evaluation of capacity. It is also important that each individual should be allowed to maximize their capacity to decide for themselves. As we age there is an increasing risk that several functions such as hearing or sight will decline. Just as we have to ensure that any such changes are ameliorated when, for example, assessing memory, so we have to take steps to minimize their impact on mental capacity. Thus, in presenting information relevant to a decision regarding consent, presenting complex material at high speed, only once and in only one modality simply will not do.

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PRACTICAL CHALLENGES For the purposes of this section it is assumed that questions of capacity and related issues such as consent arise most commonly in older people who have led independent lives but who have now some acquired mental impairment. This is not to ignore those with lifelong impairment who are now growing older (see Chapter 20, this volume) but for the latter questions of capacity are likely to arise at a much younger age and are best dealt with by those who are already working with them. Here we shall concentrate on the practical challenges in relation to the care of vulnerable older people.

Volume The first challenge is one of volume: cognitive and other mental impairments are very common especially among very old people. Thus older people are by far the most numerous user group in health and social care. A typical figure of 20% of people over the age of 80 suffering from dementia and at least two-thirds of older people in care homes suffering from cognitive impairment gives some idea of the scale of the problem. Assessments of capacity should be a daily, perhaps even an hourly, part of health and social care practice in relation to older people. Models of assessment based upon rare and complex decisions such as sterilisation in younger people are of only very limited relevance. In work with older people every practitioner needs to have a working knowledge of the key steps in determining capacity and consent and to deal routinely with these. There needs to be appropriate triage so that only those cases which pose special challenges, perhaps due to the uncertainty of the clinical picture or the magnitude or complexity of the decision, require specialist input. One consequence of mental capacity being a very common issue is that in all too many cases the issue of consent is largely ignored. A key vulnerability for older people with a cognitive impairment is that in the great majority of cases they do not get better. They are themselves very rarely later able to challenge a decision taken when others deemed them to be unable to consent. How many of those in a care home can be said to have given proper informed consent to their medication? In some cases medication may be given for the treatment of potentially life-threatening illnesses and it may be justified as being in that person’s best interests. In other cases such as the use of atypical antipsychotics or other sedative medication it is very hard to sustain such an argument and the question of consent is ignored in a conspiracy of silence. As one author puts it ‘with demented people, coercion, subterfuge or frank deception may come into play’ (Jones, 1993). The implications of doing things properly are too onerous for even the inspection regime to be rigorous in ensuring good practice, even when appropriate guidance exists. The Court of Human Rights ruling in the so-called Bournewood case is very relevant here (Department of Health, 2005; European Court of Human Rights (2004) HL v UK, App no. 45508/99, 5 October 2004). This reflects the lack of a UK legal framework to cover the situation of people who lack the capacity to consent or object to admission to, or remaining in, a hospital or care home. Literally thousands of older people with established dementia are effectively deprived of their liberty but the implications of providing Human Rights Act

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compliant procedures that can be applied on this scale are enormous. Those affected have had to wait for a long time for a solution from those drafting UK legislation. This is a very specific example of the need for good consent procedures and the provision of checks and balances to protect the most vulnerable. What makes it different is that it comes within the Human Rights Act: the key issues for good practice apply much more widely.

Fluctuating Capacity The second challenge is changing competence. The dementias are by definition progressive conditions and therefore competence will change over time. An assessment made at one time may only be valid for a comparatively short period and reassessment will often be required. Likewise fluctuating capacity is very common, perhaps due to intercurrent illness but sometimes on a diurnal basis. A typical report from a carer regarding someone with established Alzheimer’s Disease is that the person has ‘good days and bad days’. Some diseases, notably dementia with Lewy bodies, are characterized by marked fluctuations in cognitive status. Making a judgement about capacity therefore includes whether this fluctuates and if so what are any significant factors in this. It may mean linking a reassessment closely in time with the opportunity to take the decision in question.

Thresholds The third challenge is to define when capacity becomes impaired in the context of gradually changing function. A key underlying principle of health and social care for older people is that they should be helped to stay as independent as possible in their own homes for as long as they wish. Most mental decline comes on gradually so it may be quite hard to say when to call decision making into question. If someone with a dementia living alone is refusing services is this because they are doggedly determined to remain independent or because they lack insight into their decline in function? What level of risk, to them and to those around them, is acceptable before they are judged incapable of making certain types of decisions and control is taken away? What if the neighbours have a different perception of risks from that person’s family? Often it depends on a discontinuity in the status quo. A good example would be determining whether someone who has been admitted to hospital could safely be discharged. That person may have been admitted with an acute illness such as a chest infection that has now resolved. They may have been receiving no formal social care before admission and be refusing this now. However, it is clear to those who have been looking after them in hospital that there are significant risks. These may be just the same as before, but now others are aware of them. This may well trigger questions of the person’s capacity to decide where he or she lives.

Variability Related to this is a fourth challenge of the increased variability found with ageing. Many functions, including cognitive abilities, show increased inter-individual differences with age. Likewise not all functions are equally affected by ageing, let alone disease. It is even

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less appropriate to think of the ‘average older person’ than it is to have such a benchmark for younger adults. Thus benchmarks for mental capacity are likely to depend on both social and individual norms. Mrs Jones may be showing clear signs of impairment in how she deals with her finances but be no different from Mrs Smith who has been that way for many years. Should we have different thresholds for determining if each has capacity for such decisions?

UK LEGAL BACKGROUND The provisions for formally managing the affairs of those unable to do so for themselves have developed over several hundred years. In the UK, the Court of Protection was a key body responsible for this and for the latter half of the twentieth century drew its powers from the Mental Health Act. However it is a division of the Supreme Court and its origins go back for many hundreds of years. This system is widely recognized, including by the Court itself, to be in need of radical overhaul. It is a decentralized body and its full powers, in particular the active monitoring of the affairs of those under its care, can only be exercised for a small minority of its clients. The underlying principles might have worked quite well for managing the estates of a few ‘mad and wealthy’ members of the aristocracy but it is not equipped to deal with tens of thousands of older people with impaired capacity and modest assets. More recent was the creation of Enduring Powers of Attorney and this has been of considerable benefit. However both systems only deal with finance and property whereas many older people would like to know that they could ask someone else to help with issues such as health and social care. In fact many people continue to believe that the law in some way already recognizes the role of relatives in making health decisions. In fact no one is currently empowered to make health decisions on behalf of another adult, however incapacitated that adult may be. The commonly understood notion of ‘next of kin’ in health decisions is, in short, a myth. In law the only recourse is to the courts all the way to the Law Lords and each case has to be considered on its own merits: there is no simple case law here. Changes however have already been made in Scotland (Adults with Incapacity (Scotland) Act, 2000) and are being implemented for England and Wales (Mental Capacity Act, 2005). These provide arrangements for supporting those without capacity in respect of finance, property and welfare decisions. Many details of the implementation of the Mental Capacity Act are contained in the Code of Practice, published in 2007 (www.dca.gov.uk/menincap/legis.htm#codeofpractice), including, for example, the arrangements for Independent Mental Capacity Advocates, but the main implications are clear (Bartlett, 2005; Jones, 2005). In Scotland the detailed framework is continuing to evolve, for example regarding the need to increase the take up of intromission with funds, which is a procedure for managing the finances of those with modest means. Both systems need to take account of the Bournewood ruling in respect to the protection of those who have been deprived of their liberty. Detailed description of the many issues involved in determining capacity is contained in guidance produced by the BMA and Law Society (2004), and detailed guidelines for psychologists are now available (BPS (PPB) 2006). The key principles are very well

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summarized in the Equal Treatment Bench Book produced by the Judicial Studies Board (JSB 2004): Where doubt is raised as to mental capacity the question to ask is not ‘Is he (or she) capable?’ or even ‘Is he (or she) incapable?’ but rather: ‘Is he (or she) incapable of this particular act or decision?’ It may be necessary to determine the issue of capacity at a separate hearing. Note in particular that:

r capacity is an issue of fact, though it is necessary to identify and apply the appropriate legal definition or test;

r capacity depends upon understanding rather than wisdom, so the quality of the decision is irrelevant as long as a person understands what they are deciding;

r capacity must be judged for the individual in respect of the particular decision or transaction at the time it was taken or is to be taken;

r in legal proceedings, a judge makes the determination not as medical expert but as a lay person influenced by personal observation and on the basis of evidence not only from doctors but also from those who know the individual. There are a variety of different detailed legal tests for determining capacity. Thus making a will, selling property, consenting to treatment, agreeing to participate in research will all have their own particular requirements. As general guidance the wording of the Mental Capacity Act is appropriate and is based on the definition originally suggested by the Law Commission. It states that in order to have mental capacity in relation to a decision the individual must be able: (a) (b) (c) (d)

to understand the information relevant to the decision, to retain that information, to use or weigh that information as part of the process of making the decision and to communicate his/her decision (whether by talking, using sign language or any other means).

PRACTICAL IMPLEMENTATION It is worth noting at this point that when judicial consideration is being given to matters of capacity this is a civil matter and the civil standard, ‘on balance of probabilities’ rather than criminal, ‘beyond reasonable doubt’ applies. Thus in determining if an older person has lost the mental capacity (the most likely scenario) we are trying to advise on that balance of probabilities. It must be stressed that the determination is a legal one, not clinical. The role of the professional is to provide advice as an expert witness. Most cases will of course not come before a court, even the new Court of Protection to be established under the Mental Capacity Act. Nonetheless, it is important that high standards of professional practice are applied in all cases. In most cases of assessing capacity it will not be specialist mental health professionals who are doing the work. It is very important that the implementation of good practice does not lower the threshold for specialist referral but rather supports those in day-to-day work where assessment of capacity is required to develop suitable, sound procedures. There will be some cases where further expertise is required but these should be few and far between.

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This suggests that a key role for applied psychologists who do have special expertise in this area is in working with others to develop robust procedures to assess and record evidence relating to mental capacity issues. What exactly this entails will vary according to the setting in which people work. Emergency unit staff dealing with consent to treatment following trauma such as hip fractures will need a quite different approach from those working with people with dementia who are at risk in the community. However, each will need to have a clear understanding of what is required and a systematic approach. Some sort of routine training for such staff is likely to be required with a structure that enables those coming into the situation to pick up the routine essentials quickly and reliably. This is probably best built on existing practice, for example the obtaining of consent to elective surgery where related issues are dealt with on a day-to-day basis. As mentioned earlier, for the great majority of older people any loss of mental capacity occurs against a background of previous autonomy. Thus getting a good personal history is important and is one area where information from family and friends is very valuable. It can be difficult for some relatives to distinguish between being asked for background information and being asked to give their permission on behalf of the person in need. In large part this arises because of the myth of ‘next of kin’ consent to which I referred earlier. Being clear what you are asking and why is crucial. The first question should almost always be ‘consent to what’ or ‘capacity to decide what’. Sometimes requests for advice are framed along the lines of ‘Please can you advise on whether Mrs Jones has mental capacity’. As we have already seen this is quite inappropriate. Applying a functional test always means asking the question in respect of a particular decision or type of decision. If this is not clear then nothing else that follows is going to be very meaningful. Clinical history and information is obviously very important. It must be clear that there is evidence of mental disorder as without this there is a presumption of capacity. It is a necessary, albeit not sufficient, condition. It is also important to determine how things may be changing now or how they may change in the future. Those with a progressive condition may well have been assessed and reassessed several times and trends in function may be apparent. Often this means gathering information from more than one source. It is also crucial to know how consistent the person is from day to day, or even hour to hour, now. This in turn will suggest how long any determination of capacity might be valid. In acute care things may change very rapidly whereas someone with a slowly progressive Alzheimer’s disease may not be expected to change significantly for many months. There is a duty to maximize capacity and this means not only attending to issues of communication such as hearing or language but choosing the right time and setting to allow that person to perform at the best of their ability. It means allowing for memory problems as well as hearing difficulties. As in so many other areas vulnerable older people are likely to have a number of related problems rather than a single difficulty. One key issue is that there has to be a balance between clinical expedience and good practice. There will be some situations where staff may be concerned that giving information may make someone less likely to agree to a given proposal.

WHAT NEXT? As should be already clear, the procedures and framework for supporting those older people who are unable to decide for themselves are rapidly evolving. In large part this is driven

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by the same demographic changes as other aspects of health and social care and changes are happening across national boundaries. In relation to capacity and consent issues, wider social changes, especially with respect to human rights, and the steadily growing wealth of many older people mean that we can expect further changes in the future. New treatments, for example based on stem-cell implantation for neurodegenerative conditions, are likely to raise ever more complex issues. If we have sound procedures and good practice for dealing with today’s issues we will be that much better equipped to respond to future challenges.

REFERENCES Bartlett, P. (2005) Blackstone’s Guide to the Mental Capacity Act. Oxford University Press, Oxford. BMA and Law Society (2004) Assessment of Mental Capacity: Guidance for Doctors and Lawyers. BMJ Books, London. British Psychological Society (PPB) (2006) Assessment of Capacity in Adults: Interim Guidance for Psychologists. BPS, Leicester. Buchanan A.E. & Brock, D. (1989) Deciding for Others: the Ethics of Surrogate Decision Making. Cambridge University Press, Cambridge. Department of Health (2001) Reference Guide to Consent for Examination or Treatment. Department of Health, London. Department of Health (2005) ‘Bournewood Consultation’. Department of Health, London. Available at www.dh.gov.uk/en/Consultations/Closedconsultations/DH 4113613 (accessed 25 August 2007). Department for Constitutional Affairs (2007) Mental Capacity Act Code of Practice. DCA, London. Available at www.dca.gov.uk/menincap/legis.htm (accessed 20 October 2007). Jones R. (1993) Consent in dementia: is it valid and informed? In Treatment and Care in Old Age Psychiatry (eds R. Levy, R. Howard & A. Burns). Wrightson Biomedical Publishing, Petersfield. Jones R. (2005) Mental Capacity Act Manual. Sweet & Maxwell, London. Judicial Studies Board (2004) Equal Treatment Bench Book. JSB, London.

PART FIVE

Intervention

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The socio-cultural context in understanding older adults: contextual adult lifespan theory for adapting psychotherapy Bob G. Knight, Cecilia Y.M. Poon University of Southern California, Los Angeles, USA

INTRODUCTION As we move into the new century, we are facing an unprecedented rate of population ageing. The proportion of older persons above the age of 60 was 10% worldwide in 2000 and is projected to reach 21% by 2050 (United Nations, 2003). The trend of population ageing implies that mental health professionals are increasingly likely to be providing services to older clients. The need to better serve the older population has provided an impetus for research on ageing and psychological interventions with older adults. Thanks to the proliferation of research in the psychology of ageing and other disciplines, a more positive portrayal of later life is gaining momentum. While extreme frailty, illness and cognitive impairments are still frequently viewed as the inescapable elements of later life, clinicians are increasingly aware that the behaviour and beliefs of older clients are shaped both by changes associated with the developmental processes of ageing and by the unique life history and environments. This idea was captured by Knight’s (2004) Contextual, Cohort-based, Maturity, Specific Challenge model (CCMSC), which noted that the socialenvironmental contexts of older adults both in community and family settings affect clienttherapist interaction. In addition, cohort differences among older adults who grew up in a specific historical time period lead to a focus on generational groups, such as, in the US, the Depression-era generation, GI generation, and baby boomers generation, rather than focusing largely on chronological age groups when understanding older clients. These contextual foci were seen as major influences that affected the need to adapt psychotherapies developed with younger adults to older adult clients, along with the specific challenges Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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Positive Maturation

Negative Maturation

Specific Challenges

Presenting Problem

Therapeutic Relationship

Figure 26.1 Components of the Contextual Adult Life Span Theory for Adapting Psychotherapy (CALTAP). Note: CALTAP was developed as we worked on this chapter and as Bob Knight and Lewina Lee worked on a chapter for Laidlaw & Knight (eds), in press. This figure was developed jointly by Knight, Lee and Poon. CALTAP was also influenced by discussions in our lab group meetings, which included these three authors and also Jennifer Dave and Gia Robinson Shurgot, whose contributions we gratefully acknowledge.

of later life and, to a lesser degree, developmental ageing. The CCMSC was seen as a metatheoretical framework that could be used with various psychotherapy systems (Knight, 1996; Knight & McCallum, 1998; Knight & Fox, 1999; Knight & Satre, 1999) and that might also be useful in guiding an integrated psychotherapy approach with older adults (Knight, Nordhus & Satre, 2003). As interest in the pervasive influence of culture and multicultural issues in working with older adults grows within the field of clinical psychology with older people, research from social science and medical disciplines also highlights the intersectionality of sociodemographic factors, such as age, gender, race and socioeconomic status (Austin, 1991). Studies on psychotherapy with culturally diverse older adults show the importance of taking into account clients’ world-views, cultural beliefs and practices (Abramson, Trejo & Lai, 2002), and the ageing population is becoming increasingly diverse (Hinrichsen, 2006). The need to include cultural contexts explicitly in the model, a desire to be clearer about the interrelationship of components of the model and an evolution of thinking about adapting psychotherapy with older adults have led to a proposed revision of the CCMSC. The Contextual Adult Life Span Theory for Adapting Psychotherapy (CALTAP) includes elements from the CCMSC model and their relationship with cultural influences (see Figure 26.1). As before, developmental maturation brings about relatively small

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positive and negative changes in personality and emotions as well as in physical and cognitive abilities. Although not unique to later life, developmental processes and life circumstances also put older adults at greater risk for some of life’s major challenges, such as chronic illness and disability, extreme frailty, grief, and caregiving responsibilities. The CALTAP posits that the need to adapt psychotherapies developed with younger adults arises more from the contextual influences on older adults including the sociohistorical and cultural experiences of an individual, which in turn interact with the immediate social ecological context. Together, they serve to shape and guide the main adaptations of therapy with older clients, particularly in regard to problem presentation and therapist-client communication. CALTAP, like the CCMSC model, is intended to be transtheoretical with regard to systems of psychotherapy and posits little to no change in the techniques of therapeutic change, but argues for changes in presenting problems and in the interactions between therapist and client.

INDIVIDUAL AND CONTEXTUAL FACTORS Human development does not take place in a vacuum. To appraise the unique human experience, one has to consider both the individual and the context within which he or she lives. In the following, maturity associated with developmental processes experienced by older adults and specific challenges commonly encountered in later life will be discussed first, followed by contextual factors, namely cohort differences, culture and social environments, which directly influence older clients’ thoughts and behaviours in and outside of therapy, as well as indirectly through moderating the impact of individual factors.

Individual Factors Developmental processes of maturation and different challenges influence where older adults place themselves in society. Older adults’ experience in social contexts in turn has significant relevance to how psychological interventions proceed.

Maturation Informed by research in scientific gerontology and lifespan developmental psychology, the image of later life is moving away from the loss-deficit model (Gitelson, 1948) of ageing that prevailed in the early half of the last century, prior to the proliferation of lifespan developmental psychology in the 1970s and beyond. This has resulted in a more optimistic view of ageing and appreciation of both the positive and negative aspects of maturation.

Positive maturation Two positive aspects of maturation most relevant to psychological interventions with older adults are cognitive and emotional complexity.

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Cognitive complexity Contrary to ageist beliefs that every older person is demented, cognitive maturation occurs throughout adulthood and into old age (see Chapter 3, this volume). Performance in tasks related to general accumulation of information, vocabulary and arithmetic skills tends to improve from young adulthood to around age 60 and only demonstrates mild decline as a result of the ageing process after age 70 or later (Schaie, 1996). Comprehension of unfamiliar words from their context is intact until the late 70s (McGinnis & Zelinski, 2000). While there are observed changes after age 70 in average level of intellectual abilities, they are neither global nor universal and may be indicative of early stages of dementia or to illness-related declines. Accumulation of life experience and knowledge about how things are and how they work, particularly at work, in family and relationships, may have fostered the development of expert systems (Rybash, Hoyer & Roodin, 1986) and expansion and preservation of crystallized intelligence. This has resulted in the continuous development of wisdom, which refers to rich factual and procedural knowledge, lifespan contextualism, relativism of values and priorities and recognition and management of uncertainty (Baltes & Staudinger, 2000). Emotional complexity Emotional development of older adults is marked by a shift toward more positive emotion and better emotion regulation (Mather & Carstensen, 2005). According to the socioemotional selectivity theory (SST), changes in emotional development in old age are likely to be due to a shift in motivational focus to maintain emotional balance in old age and active management of the social environment to minimize negative emotions (Carstensen, Fung & Charles, 2003). This is reflected in older adults reporting greater emotional complexity and emotions that are less pure and intense than younger adults (Ong & Bergeman, 2004).

Negative maturation Despite the growing emphasis on positive aspects of maturation, ageing is nonetheless associated with less desirable changes in terms of physical and cognitive declines. Physical decline An array of models has been postulated to encapsulate the phenomenon of biological ageing. Among them, the ‘wear-and-repair’ model (Ricklefs & Finch, 1995) highlights the accumulation of exposure to environmental stresses, toxins and injuries throughout one’s life and how the human body’s ability to repair and replace the wear and tear caused by these damages gradually diminishes. For example, immune response will be less efficient in old age (Lesourd, 1999). Compared to younger adults, an older person may need more time to recover from a cold and experience more medical complications after undergoing a surgical procedure. There is great variability among older people of the same age in health. Social and psychological factors also change the pace of ageing. For example, growing up in a cohort with less economic resources and greater stress could lead to higher rates of disease and physical frailty compared to more advantaged generations (Seeman et al., 2004).

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Cognitive decline Compromised cognitive capacity in the domains of processing speed, attention and memory is evident in developmental ageing. The most pervasive change is reduced performance on most cognitive tasks that are dependent on response speed (Salthouse, 1996). The influence of ageing on reaction time is seldom completely eliminated even when practice, physical exercise and other interventions are available. According to Salthouse, decline in cognitive performance results from slowing in the central nervous system, which limits the time available for successful execution of mental operations, making the products of early processing unavailable by the time later processing is completed. However, tasks that represent ‘crystallized’ rather than ‘fluid’ intellectual abilities, such as vocabulary, rely less on processing speed and show smaller age-related decrements (Dixon, 2003; Schaie, 1996). Older adults also perform better when there is less time pressure (Earles et al., 2004). Longitudinal studies of memory change in older adults over time have generally confirmed that some aspects of memory functions, such as word recall, decline with age (Small, Dixon & Hultsch, 1999; Zelinski & Burnight, 1997), whereas other functions such as recognition memory remain relatively intact. Working memory, the limited capacity resource through which information is processed before it is registered in long term memory, also typically declines with age (Light, 2000). This could hinder new learning and language comprehension. A related phenomenon is observed reduction in attention, especially selective attention to screen out distracting or irrelevant stimuli or information (Kemper, Herman & Lian, 2003). As such, older adults tend to have greater difficulties in screening out background noise or engaging in multiple conversations that overload their attentional capacity. A basic knowledge about what maturation does to an individual is important to the understanding of how older adults function in their environments. Older adults may be better at analysing a multitude of problems and situations in their expert areas and adjusting their social networks to encompass fewer but emotionally more satisfying relationships (Lang, 2001). At the same time, decline in physical and cognitive abilities may result in a shift in the range of activities and social contexts they engage in.

Age-related specific challenges Older clients seeking psychological intervention often face problems that disrupt psychological homeostasis and produce emotional distress. On the physical side, problems such as chronic illnesses and disabilities are more common in later years because such problems accumulate over time and the ones with a progressive course worsen over time. The reduced capacity of the ‘wear-and-repair’ system of the body also contributes to greater prevalence of illness and disability. On the interpersonal side, grief work and caregiving responsibilities are more likely to be presenting problems in therapy with older clients. Chronic illness and disabilities While older adults do not always suffer from chronic medical conditions and those who do are not always struggling with functional disabilities (Zeiss et al., 1996), increasing age remains a major risk factor for the development of chronic illnesses (Crimmins, 2004) (see Chapter 4, this volume). Depending on the level of illness and impairment, this may have profound social impact on older adults as a determinant of how they position themselves

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in society. For example, an older person who has reduced mobility after a stroke may have to give up driving and cut down his or her social activities and ties. If one could no longer prepare meals, he or she may be drawn into new social contexts, such as congregate meal sites or ‘lunch clubs’. Treatment of older adults with chronic illness and disabilities also depends on the sociocultural context. Physically disabled older adults in communities where there is greater reliance on institutional care would have different experiences from those who are taken care of at home. As Crimmins (2004) pointed out, while functional loss may reside in the individual, disability may depend on conditions external to the person. In cities where better facilities are available for people with physical disabilities, chronic illness may produce less functional limitations than in an underserved region or rural areas. Grief Although loss of loved ones to death is not unique to late life, it is more commonly experienced as the older individual moves further into the later phase of life (see Chapter 5, this volume). It may be the case that the length of relationship has a profound impact on the intensity of grief. For older adults who live alone or have less social support, the experience of loss may be more strongly felt (Stroebe, Hansson, Stroebe & Schut, 2001). When working with older adults on bereavement, it is prudent to examine their immediate social environment and whether a life without the deceased is sustainable in that specific surrounding. For example, loss of a loved one is often coupled with a new social identity, such as embarking on widowhood. There may be changes in social contexts and networks when the surviving partner no longer attends social activities that were enjoyed by the couple as a unit. Living arrangements may also change if the adult children push for a move to have the surviving parent live with them. Again, the individual and contextual factors interact to change the older adults’ experience. Caregiving Given the high prevalence of illness and disability in later life, older adults often engage in prolonged caregiving for family members with severe cognitive impairment or physical frailty (see Chapter 16, this volume). In particular, caring for an older family member with dementia produces more stress than caring for a physically frail older person (Ory et al., 2000). While different levels and duration of care may be provided and reactions to caregiving vary from person to person, caregiving work on the whole can be physically and emotionally draining. Caregivers are more prone to physical and emotional distress (Pinquart & S¨orensen, 2003). Caregiving work normally takes place in specific environments, such as in an extended family. This underscores the importance of understanding the context in which ageing takes place.

Contextual Factors Older adults are often treated as one homogenous group but they by no means undergo the same kind of experience. To fully appreciate the uniqueness of each individual, one must gain a sense of how the person operates within and interacts with his or her environment.

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As such, historical and current contextual factors are crucial elements to examine in any comprehensive framework on older adults.

Historical socio-cultural context Cohort differences As opposed to the notion of attributing difference between younger and older adults to maturation alone, both the CALTAP and the CCMSC model emphasize cohort effects in shaping one’s trajectories in late life. Membership in different birth-year defined cohorts places individuals in different socio-historical contexts, resulting in varying beliefs, attitudes, personality dimensions and functional abilities. Cohort differences suggest that we need to constantly re-evaluate services for older adults, because the nature of the older population changes as each new cohort enters old age. Intellectual skills Later-born cohorts tend to have better performance in tests on reasoning ability, spatial orientation and vocabulary (Alwin & McCammon, 2001; Bowles, Grimm & McArdle, 2005; Gilbert & Rogers, 1999), whereas some earlier born cohorts are superior in arithmetic ability and verbal fluency (Schaie, 1996). Such cohort effects may at least in part be due to different socio-historical environments and opportunities available to the individuals. In most developed nations, for example, later-born cohorts have more years of formal schooling than individuals born earlier in the last century, thus contributing to observed differences in intellectual abilities between younger and older adults. Personality and emotion Cohort differences are also noted in the realm of personality (Mroczek & Spiro, 2003). In the Seattle Longitudinal Study, Schaie (1996) found that from 1900 to World War Two, the trait of extroversion declined in successive cohorts. However, extroversion increased in postwar cohorts. Likewise, threat reactivity has increased with each cohort since the beginning of the twentieth century. On the other hand, life satisfaction remains relatively stable with developmental ageing and across birth cohorts, although earlier born older adults are less likely to express either positive or negative affect. Research also suggests that laterborn cohorts are more prone to depression. In general, observed differences in personality between younger and older adults are often cohort effects rather than developmental aspects of ageing. Historical experiences Importantly, older adults from different cohorts have distinctive generational experiences (e.g. Great Depression, World Wars, political upheavals in Asia and Middle-East, major waves of immigration). These unique experiences have an impact on how older adults view themselves and others, as well as how they interact with members of the society and their family in current relationships. Younger therapists not only need to have a basic

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understanding about different customs and historical events associated with different cohorts but also to be ready to explain events and ideas of the younger generations that are not familiar to the older client. Older adults who belong to a different time may use words, anecdotes and references to public or fictional figures in the media that are unfamiliar to the therapist. Knight (2004) states that working with older adults entails learning something of the folkways of people born many years before. Some appreciation of old movies and music can help strengthen rapport with the older client. A genuine acknowledgement of older adults’ unique cohort experience in the historical context, without blindly assuming every older client has been through the same life trajectory, may foster a sense of trust and understanding in therapistclient interaction. Cohort beliefs and behaviours Because of their different personal experience and the socio-historical context they grew up in, older adults from different cohorts may conform to different norms and values. The client’s experiences and values are rooted in a social context that may be dissimilar and unfamiliar to the therapist. Even when the same words are used, meanings ascribed may differ by cohort. Earlier born older adults may feel uncomfortable using words and phrases commonly employed by the younger generation. For example, older adults may be less willing to openly talk about their sexuality and related difficulties (Deacon, Minichiello & Plummer, 1995). Some prefer less explicit terms, such as ‘being intimate’ instead of ‘having sex’. Although information on a particular cohort may not be readily accessible to younger therapists, they can be gathered through an open interaction with older clients. It is helpful for the therapist to use his or her ignorance constructively to learn from the client about the client’s experience when there is a discrepancy in socio-cultural background between the client and the therapist (Knight & Satre, 1999). Cohort beliefs about mental distress and psychological services also require some recognition before more adaptive beliefs are explored and promoted in therapy. One powerful cohort effect is the familiarity with psychology and psychotherapy demonstrated by later born cohorts. Earlier born cohorts of older adults do not have as much knowledge about mental illness as younger generations. Older adults are more likely to perceive people with mental health problems as being embarrassing and having poor social skills (Segal et al., 2005). They are also more likely to associate mental illness with personal failure or weakness and spiritual deficiency (Lebowitz & Niederehe, 1992). Greater perceived stigma attached to mental illness and psychotherapy may not only reduce older adults’ inclination to seek mental health treatment but also increase the likelihood that they downplay the seriousness of symptoms, as they regard self-sufficiency to be a virtue in handling mood disturbances such as depression, anxiety and bereavement (Robb et al., 2003). Some older adults therefore delay help-seeking, for fear of bringing shame to the family and themselves for being morally weak. An understanding of such beliefs is crucial for treatment planning and a detailed explanation of current practices in psychotherapy may be needed to strengthen the therapeutic relationship. Social norms also differ by cohorts. For example, while it is now common for women in the developed world to delay or give up marriage for career attainment, such behaviours may have held much less social appeal a few decades ago. Likewise, social stigma and psychological distress attached to being born out of wedlock were different for individuals growing

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up in the early twentieth century than in the present time. Even though it is impossible for therapists to know clearly about the specific sets of norms of every cohort and locale, they have to constantly remind themselves not to jump to conclusions by applying the standards of current times to the older client’s experience as a young adult several decades ago. Along with cohort differences, culture also influences the experience of older clients.

Culture To fully gauge the impact of culture on older adults, we may approach it from two perspectives: ethnic and racial differences in socioeconomic resources and opportunities, as well as cultural values and beliefs. Although the discussion of cultural impact generally adopts the approach of ethnicity as culture (Aranda & Knight, 1997), it is important to acknowledge that there is as much diversity within each ethnic population as across these groups, where cohort and contextual differences come into play. Culture and cohort interaction The ageing process is marked by great variability. Austin (1991) reminded the gerontological community not to forget those who cannot age well because of social factors over the life course, including poverty, rural residence, poor nutrition, substandard housing, limited educational opportunities, abuse or catastrophic losses that reduce life chances and limit access to an ‘ageing well’ lifestyle. For example, while it is true that earlier born cohorts tend to have received less formal schooling than those born later, ethnic minority older adults who grew up in the US often possess less formal education than their White counterparts because of limited social and economic resources related to segregation and racism in earlier eras. Older adult immigrants who came from less developed countries in mid-life to pursue a better future for their family also tend to have poorer literacy both in English and their native language (Lau & Kinoshita, 2006). Given the huge impact of education on cognitive abilities in old age, racial disparities in educational opportunities and attainment may partially explain varying degrees of cognitive maturation and decline among older adults from different cultural backgrounds. Ethnic differences do not only moderate cohort effects – they also work in the opposite direction. For example, earlier-born cohorts in the West may have grown up in an era when public expression of unfavourable attitudes towards ethnic minorities was socially sanctioned (Hinrichsen, 2006). When older clients make prejudiced remarks about other racial or ethnic groups, therapists have to keep in mind how racial and ethnic differences were addressed by different cohorts. They also need to be aware of how racial and ethnic differences between the client and the therapist may influence the therapeutic relationship. Cultural values and beliefs Cultural diversity in later life leads to endorsement of different values and beliefs, which are central to the understanding of older people in terms of help-seeking behaviours, presentation in treatment and behaviours in broader social and familial contexts.

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Illness interpretation and help seeking In countries such as the US and UK, ethnic minority older adults are likely to interpret symptoms and illnesses using different models from those prevalent in older adults from the ethnic majority population. Studies on different ethnic groups in Asia, for example, suggest that they do not view the person in terms of a duality of mind and body but as a being that is embedded in a broader social context. The illness representation beliefs held among sociocentric Asian cultures, compared to those held in more egocentric European and Northern American cultures, also differ (Landrine & Klonoff, 2001). Egocentric cultures endorse a biomedical disease model, whereas sociocentric cultures often dismiss mind-body dualism and do not distinguish among medical, spiritual, emotional and social practices. In general, South and East Asians tend to emphasize illness as a consequence of imbalance and disharmony among relationships, behavioural and moral wrongdoings. Thus, older adults from some cultural backgrounds have greater tendency to believe psychological difficulties are caused by moral misconduct or shortcomings of the individual or the ancestors (Gallagher-Thompson, Talamantes, Ramirez & Valverde, 1996). For example, older Japanese people are said to try to remain active to guard against the onset of senility, a condition known to them as boke. When it does occur, however, they perceive that as a failure to make sufficient effort to minimize potential burden on family members and society (Traphagan, 2000). Older adults from some cultures are therefore less inclined to seek mental health care because admitting they are in distress may bring shame and stigma to the family (Gallagher-Thompson et al., 1996). At the same time, many cultures have their own support networks and remedies for medical and psychological problems, such as reliance on family and relatives, shaman or folk medicines (Braun & Browne, 1998; Harris, 1998). Westermeyer (1988) reported that some Southeast Asians may believe in folk medical schema, such as the traditional Hindu, ayurvedic medical system, which suggests that diseases are caused by imbalance of three vital body elements and can be treated by restoring the balance. Instead of dismissing these traditional views, research on South Asian depressed patients shows that an integrative approach involving both the traditional healing resources and standard Western treatment proves to be most effective (Sembhi & Dein, 1998). This highlights the importance of understanding the older client’s worldview and illness attributions that are shaped by their respective cultural heritage and beliefs, which is important to the process of treatment planning. Behaviour in therapy Symptom presentation may also differ across cultural groups because of values ascribed to emotional distress. Older adults from some cultural backgrounds tend to express depression, anxiety and other psychological distress in culturally-accepted somatic forms such as aches and insomnia (Sue & Sue, 2003). One speculation is that because of the unitary concept of mind and body common to many Asian cultures, somatization of disturbances to the mind is more acceptable. Different cultures also have different display rules for emotions. It is important that therapists incorporate an older client’s cultural beliefs and vocabulary regarding feelings and emotions, especially when working with older clients whose native language is not English. For example, Tsai, Simeonova and Watanabe (2004) observed that even when controlling for language spoken, cultural conceptions of emotion may influence

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how people talk about emotion. Less acculturated Chinese Americans were more likely to use somatic and social words to describe their emotions than European Americans. Collectivism, familism, filial piety Cultures are often divided along the individualism/collectivism dimension, which assumes that North American and Western European cultures value individualistic goals whereas other cultures emphasize collectivistic goals (Triandis, 1995). According to this distinction, collectivistic cultures encourage interpersonal relatedness and harmony, whereas individualistic cultures encourage a focus on individual welfare and uphold an autonomous definition of the self. One good indicator of adherence to the individualism/collectivism dimension relevant to older adults and to caregiving is familism (Knight et al., 2002), which refers to strong ingroup feelings, emphasis on family goals, common property, mutual support and the desire to pursue the perpetuation of the family (Bardis, 1959). Within the East Asian value system that is derived from Confucianism, a similar concept of filial piety exists (Kim, Atkinson & Yang, 1999). Mutual support within the family is emphasized but filial piety differs from familism in that the former concept places greater emphasis on care and respect for the oldest member of the family. Filial piety guides younger members in society to acknowledge the care they received from older people and the filial obligation to respect and care for them in return, both as repayment of debt and affection toward the parents (Chee & Levkoff, 2001). Sung (2004) demonstrated that although both American and Korean students show respect for older people, expressions of elder respect come in different forms among South Koreans, where the cultural norm is more heavily influenced by the concept of filial piety than in the West. Although individuals from the same cultural background differ in the degree of value endorsement, these values may exert an influence on the way older adults interact with their social and interpersonal contexts.

Current socio-cultural context The impact of socio-historical context and cultural differences infiltrates the immediate context. General knowledge of the distinctive social context of older adults is essential for mental health professionals working with the ageing population. This may include specific environments in living, medical and recreational settings, as well as interpersonal interactions taking place in the family and the society at large. Both the CCMSC model and CALTAP caution that we have to focus on the social context of the older client because they are often influenced by the context in which they live their lives. CALTAP extends this idea further by highlighting how culture plays a role in shaping the immediate social environments. Therapists need to guard against attributing older adults’ behaviour to their advanced age and presumed physical deterioration and younger adults’ behaviours to environmental demands. Specific environments Given the multidisciplinary nature of service provision to older adults, mental health professionals need to have sufficient knowledge of systems and environments that directly affect older adults’ behaviours and beliefs. This is critical for planning appropriate

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interventions that require the use of classic behavioural and social learning treatment models, since aspects of the environment often reinforce maladaptive behaviour (Satre, Knight & David, in press).

Living arrangements Many older adults continue to live independently in neighbourhoods that are not age-specific but mental health professionals serving the older population will often work with clients who live in more specialized settings, namely age-segregated housing (such as ‘sheltered housing’ schemes in the UK), retirement homes and nursing homes. An accurate and olderclient centred view of these living environments and a realistic understanding of what can and cannot be changed in some of the highly structured residential settings are important to successful planning and implementation of psychological interventions. For example, assumptions that because they are of similar age, older adults living in the same age-segregated housing or retirement homes enjoy the company of each other and do not have interpersonal conflicts are far from being realistic depictions of these living arrangements. It is true that these segregated settings bring together people of similar age. However, there is often little social interaction, particularly for earlier-born cohorts who have spent most of their lives in detached housing units and do not feel comfortable interacting with strangers in the same senior citizen housing complex. In a similar vein, limited exposure to specialized living environments of older adults may blind the clinician from the reality that each setting is a distinct social system. A retirement home inhabited mainly by younger, healthier and more educated older adults of similar ethnic origins may promote activities and interactions that are different from those available at a home whose residents are older, frailer and culturally more diverse. The impact of the living environment on older adults’ wellbeing is exemplified by the fact that staff in nursing homes tend to reward older adults by approving of their passive conformity to scheduled routines, thus reducing the activity levels, sense of control and positive mood among older adult residents (Segal, 2005).

Medical settings Whether it is because of physical decline and illness experienced by the self or a family member, hospitals and clinics are key contextual environments where many older adults spend large parts of their lives. Therapists do not have to possess extensive medical knowledge but it is often necessary for them to have a general understanding of the interaction style between medical professionals and older clients. For example, medical doctors often have such heavy caseloads that they would only spend a minute or two with the older client. Older adult clients, on the other hand, may hope to engage in a longer conversation, thus resulting in less satisfaction derived from the physician-patient communication. In terms of the atmosphere, medical settings are often occupied by chronically ill and frail older adults. Therapists need to bear in mind how depressing it may be for older clients to have frequent exposure to illness and death in these settings. Without having an understanding of the experience of older clients as patients in medical settings, the therapist may have difficulty understanding clients’ accounts as an honest and realistic appraisal of their stays in these settings.

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Recreational settings As stated in previous sections, chronic illness and functional loss may limit social activities available to some older adults. Each senior centre (‘over-60s clubs’ or day centres, in the UK) and recreational group has its own specific client group and facilities, which may make it harder for some older individuals to fit in fully. For example, a senior centre that mainly caters to the needs of post-stroke older clients with limited physical mobility may not have as many activities that appeal to a physically active older adult. As in the case of age-segregated housing and nursing homes, older adults who go to senior centres are from different backgrounds and have different personalities. It would be dangerous to assume that encourageing older adults to go to senior centres would help them establish new friendships. On the contrary, therapists have to realize that in recreational settings, as in other social contexts, conflicts may arise and be brought to the therapist as an interpersonal problem to be dealt with. Specific environments within which older adults function are in part determined by distinct processes of maturation and challenges. To view the older adult as a whole person, therapists may consider visiting places where the older client receives services. Interpersonal environments Experiences of older adults are often shaped and modified by their interpersonal encounters. These usually take place in the more immediate context of the family, as well as the more subtle but nonetheless pervasive interaction between the individual and society through the media and daily interactions with other people in the community. Family Increased longevity and changes in social and family practices have created greater opportunities of intergenerational interaction (Bengtson, 2001). Older adults often take up the responsibility to provide care and nurturance to younger generations. Intergenerational relationships can be a potential source of tension and discord, when older generations disapprove of, or misunderstand, changes in family structures or marital relationships (Bengtson et al., 2000). In families where adult children have to go out to work and older adults have to provide instrumental support to care for their grandchildren, the older family members may show a sense of frustration and disapproval towards their adult children, especially daughters, for failing to fulfil their childcare duties. The family context is moderated by birth cohorts. Intergenerational interaction may become a source of distress when deeply held cohort beliefs about the notions of family come into conflict. For example, older generations may express disappointment and displeasure towards their adult children if they have not settled down and started a family by the age common in the parents’ cohort. The increase in longevity may result in certain life stages being reached at different ages for different generation cohorts, creating even more misunderstandings and tensions across generations. Cultural beliefs also moderate the impact of contextual influence on an older person’s family life. While intergenerational relationships occurring in the family context in itself may create discord and tensions because of differences in cohort beliefs and values, it is likely to be even more intense in households where changes in culture are being experienced. For example, in countries such as the USA and UK, the situation might arise where less

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acculturated ethnic minority older adults with more traditional values and role expectations interact with family members of the younger generation who have become acculturated to Western values and worldviews (Lau & Kinoshita, 2006). For instance, older adults who value filial piety may be disappointed with adult children who fail to give sufficient respect and obedience to the older family member. In a similar vein, older adults who grew up in a family context that highly valued interpersonal harmony may be more reluctant to voice their distress in the current family context, fearing that the family dynamic would be disrupted. In dealing with emotional distress derived from these situations, therapists need to consider both the cohort differences in beliefs and also the level of acculturation and adherence to traditional values by different cohorts within the family. By the same token, providing care to an older member in the family context is moderated by the family’s cultural background. Research in the US has suggested that because of the endorsement of collectivistic beliefs and respect for older people, some ethnic minority families are less likely to place the older adult in a nursing facility or other external living settings. They are also more likely to dismiss problems in an older relative until they have become more serious. For example, Korean families tend to normalize and buffer symptoms of Alzheimer’s Disease in older family members, thus delaying help seeking until symptoms become more severe (Watari & Gatz, 2004). Ethnic minority older adults who are also spouses or adult children to a frail older family member may therefore be more likely to take up the caregiving role. Because of their greater reluctance to seek help, the stress and burden associated with caregiving may be augmented for such ethnic minority older caregivers. In a review of studies on family caregivers of older adults with dementia, where the caregivers came from culturally diverse backgrounds, Knight et al. (2002) noted that culture may affect one’s coping styles and social support rather than appraisal of caregiving burden and stress. Changes in recent decades among younger generations also have important implications for the family context of future cohorts of older adults. Specifically, younger generations of women are more likely to delay childbirth, resulting in lower birth rates worldwide. This makes it more likely that older adults will not have enough family support from adult children, thus requiring them to solicit help from siblings and other relatives, or obtain paid services or housing (Satre, Knight & David, in press). All these imply a foreseeable shift in family context of current and future generations of older adults, which may affect the nature of presenting problems of older adults in therapy. Society A less direct, yet significant interpersonal context that influences older adults is society at large and attitudes towards ageing that affect the concept of self and interaction of older adults with other members of society. Western society is infiltrated with stereotypes of ageing in the media (Donlon, Ashman & Levy, 2005). Donlon and colleagues (2005) found that older adults who watched more television had more negative images of ageing than those with less TV viewing. In a meta-analysis of 243 studies pertaining to ageism and stereotypes of ageing, although ageing stereotypes were found to encompass both the positive and negative aspects of ageing, undesirable characteristics such as forgetfulness, incompetence and unattractiveness were more common (Kite et al., 2005). The prevalence of stereotypes of ageing influences the treatment older adults receive from other individuals in society. Cuddy, Norton and Fiske (2005) show that older adults are perceived and treated differently from younger adults by people of different backgrounds

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within our society, including health professionals. Medical professionals are often influenced by existing beliefs about old age in society. At the same time, older adults who endorse ageist beliefs also tend to treat fellow older people less favourably. Therapists have to be aware that the intensity and frequency of ageist attitudes in society will affect the experience of an older person in various settings. Equally significant is the internalization of negative stereotypes about growing old, which has made many older adults conform to the assumption that loss and sufferings are inevitable in later life (Levy, 2003). This is important in understanding the older client because negative views towards ageing may be reinforced and endorsed by both older adults themselves and society at large. Older adults’ perceptions about ageing may affect how they approach their physical and emotional distress. Older people who hold negative expectations of old age are more likely to regard unhappy or depressed mood as a part of normal ageing that is not amenable to treatment. As a consequence, they often delay treatment seeking (Sarkisian, Lee-Henderson & Mangione, 2003). Compared to younger adults, older adults tended to view depression as a less severe problem, thus feeling less likely to consider having a consultation with mental health professionals (Robb et al., 2003). Depending on the intensity of covert and overt ageism in the particular society, older adults may behave differently. A compelling body of research on ageing stereotypes demonstrates that experimental manipulation of ageing stereotypes in laboratories resulted in suppression of memory performance in older adults (Chasteen et al., 2005; Hess, Hinson & Statham, 2004; Levy, 2003). Individuals who had less favourable expectations of ageing also had poorer gait in randomized experiments and poorer hearing 36 months later (Hausdorff, Levy & Wei, 1999; Levy, Slade & Gill, 2006). Recognizing how the dominant views of ageing in society affect cognitive and functional abilities of older adults may help therapists in case conceptualization and understanding older clients who bring with them anxiety or complaints about memory problems and functional loss. This argument also points to the importance of therapists being aware of their own ageism, in order to effectively combat self-directed ageism in older clients. An understanding of specific and specialized environments, both historical and current, could enhance the level of comfort and expertise of mental health professionals in working within these settings to promote intervention and change that are helpful to older clients. Each of these settings is governed by its unique set of rules and culture. Generalizing the understanding of one setting to another and assuming that they are the same may result in an incomplete appraisal of later life that dismisses the influence of individual difference in terms of physical and cognitive abilities, cohort and cultural backgrounds.

CONCLUSION To understand an older client in psychotherapy, we have to place the individual in a specific historical, social and cultural context. While it is unrealistic to expect the clinician to have a thorough familiarity with every piece of historical and social event or cultural value that an older client has, clinicians have to be ready to learn about these events and their impact through asking the older client in a candid way. Older clients often welcome being asked to explain and describe the socio-cultural context they once lived in and feel better understood (Knight & Satre, 1999). The extent to which therapists are willing and able to appreciate the individual-environment interaction encountered by the older client has a huge impact on therapeutic relationship. Ultimately, it is the genuine interest in understanding the

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older client’s specific experience that will be most crucial in paving the way for successful psychological interventions with older clients.

REFERENCES Abramson, T.A., Trejo, L. & Lai, D.W.L. (2002) Culture and mental health: Providing appropriate services for a diverse older population. Generations: Journal of the American Society on Ageing, 26, 21–7. Alwin, D.F. & McCammon, R.J. (2001) Ageing, cohorts and verbal ability. Gerontologist, 56, S151– S161. Aranda, M.P. & Knight, B.G. (1997) The influence of ethnicity and culture on the caregiver stress and coping process: a sociocultural review and analysis. The Gerontologist, 37, 342–54. Austin, C.D. (1991) Ageing well: what are the odds? Generations, 15(1), 73–5. Baltes, P.B. & Staudinger, U.M. (2000) A metaheuristic (pragmatic) to orchestrate mind and virtue towards excellence. American Psychologist, 55, 122–36. Bardis, P.D. (1959) A familism scale. Marriage and family living, 21, 340–1. Bengtson, V.L. (2001) Beyond the nuclear family: The increasing importance of multigenerational bonds. Journal of Marriage and the Family, 63, 1–16. Bengtson, V.L., Biblarz, T., Clarke et al. (2000) Intergenerational relationships and ageing: Families, cohorts and social change, in The Gerontological Prism: Developing Interdisciplinary Bridges (eds J.M. Clair & R. Allman). Baywood Publishing, New York. Bowles, R.P., Grimm, K.J. & McArdle, J.J. (2005) A structural factor analysis of vocabulary knowledge and relations to age. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 60, P234–P241. Braun, K.L. & Browne, C.V. (1998) Perceptions of dementia, caregiving and help-seeking among Asian and Pacific Islander Americans. Health and Social Work, 23, 262–74. Carstensen, L.L., Fung, H.H. & Charles, S.T. (2003) Socioemotional selectivity theory and the regulation of emotion in the second half of life. Motivation and Emotion, 27, 103–23. Chasteen, A.L., Bhattacharyya, S., Horhota, M. et al. (2005) How feelings of stereotype threat influence older adults’ memory performance. Experimental Aging Research, 31, 235–60. Chee, Y.K. & Levkoff, S.E. (2001) Culture and dementia: Accounts by family caregivers and health professionals for dementia-affected elders in South Korea. Journal of Cross-Cultural Gerontology, 16, 111–25. Crimmins, E.M. (2004) Trends in the health of the elderly. Annual Review of Public Health, 25, 79–98. Cuddy, A.J.C., Norton, M.I. & Fiske, S.T. (2005) This old stereotype: the pervasiveness and persistence of the elderly stereotype. Journal of Social Issues, 61, 267–85. Deacon, S., Minichiello, V. & Plummer, D. (1995) Sexuality and older people: revisiting the assumptions. Educational Gerontology, 21, 497–513. Dixon, R.A. (2003) Themes in the ageing of intelligence: robust decline with intriguing possibilities, in Models of Intelligence: International Perspectives (eds R.J. Sternberg & J. Lautrey). American Psychological Association, Washington DC, pp. 151–67. Donlon, M.M., Ashman, O. & Levy, B.R. (2005) Re-vision of older television characters: A stereotypeawareness intervention. Journal of Social Issues, 61, 307–19. Earles, J.L., Kersten, A.W., Berlin, M.B & Miccio, D.M. (2004) Ageing and memory for selfperformed tasks: effects of task difficulty and time pressure. Journals of Gerontology B: Psychological Sciences and Social Sciences, 59, 285–93. Gallagher-Thompson, D., Talamantes, M., Ramirez, R. & Valverde, I. (1996) Service delivery issues and recommendations for working with Mexican American family caregivers, in Ethnicity and the dementias (eds G. Yeo & D. Gallagher-Thompson). Taylor & Francis, Washington, pp. 37–152. Gilbert, D.K. & Rogers, W.A. (1999) Age-related differences in the acquisition, utilization and extension of a spatial mental model. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 54, P246–P255. Gitelson, M. (1948) The emotional problems of elderly people. Geriatrics, 3, 135–50. Harris, H.L. (1998) Ethnic minority elders: issues and interventions. Educational Gerontology, 24, 309–24.

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Hausdorff, J.M., Levy, B.R. & Wei, J.Y. (1999) The power of ageism on physical function of older persons: Reversibility of age related gait changes. Journal of the American Geriatrics Society, 47, 1346–9. Hess, T.M., Hinson, J.T. & Statham, J.A. (2004) Explicit and implicit stereotype activation effects on memory: Do age and awareness moderate the impact of priming? Psychology and Ageing, 19, 495–505. Hinrichsen, G..A. (2006) Why multicultural issues matter for practitioners working with older adults. Professional Psychology: Research and Practice, 37, 29–35. Kemper, S., Herman, R.E. & Lian, C.H-T. (2003) The costs of doing two things at once for young and older adults: talking while walking, finger tapping and ignoring speech or noise. Psychology and Ageing, 18, 181–92. Kim, B.S.K., Atkinsons, D.R. & Yang, P.H. (1999) The Asian Values Scales: Development, factors analysis, validation and reliability. Journal of Counseling Psychology, 46, 342–52. Kite, M.E., Stockdale, G.D., Whitley, B.E., Jr. & Johnson, B.J. (2005) Attitudes toward younger and older adults: an updated meta-analytic review. Journal of Social Issues, 61, 241–66. Knight, B. G. (1996) Psychotherapy with older adults (2nd Ed.). Sage Publications, London. Knight, B. (2004) Psychotherapy with older adults, 3rd edn. Sage Publications, Thousand Oaks CA. Knight, B. & Fox, L.S. (1999) La practica de la terapia conductual, in Intervencion psicologica in la vejez (eds I. Montorio & M. Izal). Sintesis, Madrid. (Translated by editors.) Knight, B. & McCallum, T.J. (1998) Family therapy with older clients: The contextual, cohort-based, maturity/specific challenge model, in Clinical Geropsychology (eds I.H. Nordhus, G., VandenBos, S. Berg & P. Fromholt). American Psychological Association, Washington DC, pp. 313–28. Knight, B., Nordhus, I.H. & Satre, D.D. (2003) Psychotherapy with the older client: an integrative approach, in Comprehensive Handbook of Psychology, Vol. 8: Clinical Psychology (eds I.B. Weiner, G. Stricker & T.A. Widiger). John Wiley & Sons, New York. Knight, B., Robinson, G.S., Longmire, C.F. et al. (2002) Cross cultural issues in caregiving for persons with dementia: Do familism values reduce burden and distress? Ageing International, 27, 70–94. Knight, B. & Satre, D.D. (1999) Cognitive behavioral psychotherapy with older adults. Clinical Psychology, 6, 188–203. Landrine, H. & Klonoff, E.A. (2001) Cultural diversity and health psychology, in Handbook of Health Psychology (eds A.S. Baum, T.A. Revenson & J.E. Singer). Lawrence Erlbaum Associates, Mahwah NJ, pp. 851–91. Lang, F.R. (2001) Regulation of social relationships in later adulthood. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 56, P321–P326. Lau, A.W. & Kinoshita, L.M. (2006) Cognitive-behavioral therapy with culturally diverse older adults, in Culturally Responsive Cognitive-behavioralTherapy: Assessment, Practice and Supervision (eds P.A. Hays & G.Y. Iwamasa). American Psychological Association, Washington DC, pp. 179–97. Lebowitz, B.D. & Niederehe, G. (1992) Concepts and issues in mental health and ageing, in Handbook of Mental Health and Ageing, 2nd edn (eds J.E. Birren, R.B. Sloane & G.D. Cohen) Academic Press, San Diego CA, pp. 3–27. Lesourd , B. (1999) Immune response during disease and recovery in the elderly. Proceedings of the Nutrition Society, 58, 59–67. Levy, B.R. (2003) Mind matters: cognitive and physical effects of ageing self-stereotypes. Journal of Gerontology: Psychological Sciences, 58B, P203–P211. Levy, B.R., Slade, M.D. & Gill, T.M. (2006) Hearing decline predicted elders’ stereotype. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 61,P82–P87. Light, L.L. (2000) Memory changes in adulthood, in Psychology and the Ageing Revolution: How we Adapt to Longer Life (eds S.H. Qualls & N. Abeles). American Psychological Association, Washington DC, pp. 73–97. Mather, M. & Carstensen, L.L. (2005) Ageing and motivated cognition: the positivity effect in attention and memory. Trends in Cognitive Science, 9, 496–502. McGinnis, D. & Zelinski, E.M. (2000) Understanding unfamiliar words: The influence of processing resources, vocabulary knowledge and age. Psychology and Ageing, 15, 335–50. Mroczek, D.K. & Spiro, A. (2003) Modeling intraindividual change in personality traits: findings from the Normative Ageing Study. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 58, P153–P165.

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Ong, A.D. & Bergeman, C.S. (2004) The complexity of emotions in later life. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 59, P117–P122. Ory, M.G., Yee, J.L., Tennstedt, S.L. & Schulz, R. (2000) The extent and impact of dementia care: Unique challenges experienced by family caregivers, in Handbook of Dementia Caregiving (ed. R. Schulz). Springer, New York, pp. 1–32. Pinquart, M. & S¨orensen, S. (2003) Differences between caregivers and non-caregivers in psychological health and physical health: a meta-analysis. Psychology and Ageing, 18, 250–67. Ricklefs, R.E. & Finch, C.E. (1995) Aging: a natural history. Scientific American Library, New York. Robb, C., Haley, W.E., Becker, M.A. et al. (2003) Attitudes towards mental health care in younger and older adults: similarities and differences. Ageing and Mental Health, 7, 142–52. Rybash, J.M., Hoyer, W.J. & Roodin, P.A. (1986) Adult Cognition and Ageing. Pergamon Press, Elmsford NY. Salthouse, T.A. (1996) The processing-speed theory of adult age differences in cognition. Psychological Review, 103, 403–28. Sarkisian, C.A., Lee-Henderson, M.H. & Mangione, C.M. (2003) Do depressed older adults who attribute depression to ‘old age’ believe it is important to seek care? Journal of General Internal Medicine, 18, 1001–5. Satre, D.D., Knight, B.G. & David, S. (in press) Cognitive behavioural interventions with older adults: Integrating clinical and gerontological research. Professional Psychology: Research and Practice. Schaie, K.W. (1996) Intellectual development in adulthood, in Handbook of the Psychology of Ageing, 4th edn (eds J.E. Birren & K.W. Schaie). Academic Press, San Diego CA. pp. 266–286. Seeman, T.E., Crimmins, E., Singer, B. et al. (2004) Cumulative biological risk and socio-economic differences in mortality: MacArthur Studies of Successful Ageing. Social Science Medicine, 58, 1985–97. Segal, D.L. (2005) Relationships of assertiveness, depression and social support among nursing home residents. Behavior Modification, 29, 689–95. Segal, D.L., Coolidge, F.L., Mincic, M.S. & O’Riley, A. (2005) Beliefs about mental illness and willingness to seek help: a cross-sectional study. Ageing and Mental Health, 9, 363–7. Sembhi, S. & Dein, S. (1998) The use of traditional healers by Asian psychiatric patients in the UK: a pilot study. Mental Health, Religion and Culture, 1, 127–33. Small, B.J., Dixon, R.A. & Hultsch, D.F. (1999) Longitudinal changes in quantitative and qualitative indicators of word and story recall in young-old and old-old adults. Journal of Gerontology: Psychological Sciences, 54B, P107–P115. Stroebe, M.S., Hansson, R.O., Stroebe, W. & Schut, H. (eds.) (2001) Handbook of Bereavement Research: Consequences, Coping and Care. American Psychological Association, Washington DC. Sue, D.W. & Sue, D. (2003) Counseling the Culturally Diverse: Theory and Practice, 4th edn. John Wiley & Sons, New York. Sung, K.T. (2004) Elder respect among young adults: a cross-cultural study of Americans and Koreans. Journal of Ageing Studies, 18, 215–30. Traphagan, J.W. (2000) Taming Oblivion: Ageing Bodies and the Fear of Senility in Japan. State University of New York Press, Albany NY. Triandis, H.C. (1995) Individualism and Collectivism. Westview Press, New York. Tsai, J.L., Simeonova, D.I. & Watanabe, J.T. (2004) Somatic and social: Chinese Americans talk about emotion. Personality and Social Psychology Bulletin, 30, 1226–38. United Nations (2003) World Population Ageing: 1950–2050. Available from www.un.org/esa/ population/publications/worldageing19502050/ (accessed 26 August 2007). Watari, K. & Gatz, M. (2004) Pathways to care for Alzheimer’s disease among Korean Americans. Cultural Diversity and Ethnic Minority Psychology, 10, 23–38. Westermeyer, J. (1988) Folk medicine in Laos: a comparison between two ethnic groups. Social Science and Medicine, 27(8), 769–78. Zeiss, A.M., Lewinsohn, P.M., Rohde, P. & Seeley, J.R. (1996) Relationship of physical disease and functional impairment to depression in older people. Psychology and Ageing, 11, 572–81. Zelinski, E.M. & Burnight, K.P. (1997) Sixteen-year longitudinal and time lag changes in memory and cognition in older adults. Psychology and Ageing, 12, 503–13.

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Cognitive behaviour therapy with older people Ken Laidlaw University of Edinburgh, Edinburgh UK

INTRODUCTION This chapter aims to provide clinicians with an informative and comprehensive review of the application of cognitive behaviour therapy (CBT) with older people. There are a number of elements that underpin this review, such as understanding the context of ageing in modern society (see Chapter 26, this volume) and the context of depression in later life (see Chapter 6, this volume). In a review of CBT with older people it is important to provide some introductory information about CBT itself; however, readers interested in a fuller account are referred to the classic text by Beck et al. (1979), and a more up to date examination by Clark, Beck and Alford (1999). It is also important to consider the empirical evidence for CBT as a treatment with older people. In terms of actually doing CBT with older people it is also necessary to review issues arising in the application of CBT with older people and evidence will be presented regarding whether or not CBT needs to be modified for use with older people. Although there are still many gaps in the literature in terms of what is known about the use of psychotherapy with older people, nonetheless space would not allow discussion of all the studies that may be pertinent. In this chapter, the most important and interesting studies for understanding CBT in later life are reviewed.

DEMOGRAPHIC CHANGE: THE DYNAMICS OF AGEING The ageing of the world’s population means the age distribution of society is undergoing change. This is important for psychotherapists as it means that the types of cases seen by therapists working with older people will also change. The psychological expectations of the baby boomer generation will become more evident and older people may become more sophisticated about using psychotherapy in years to come. These are welcome and exciting times to be a psychotherapist working with older people (Laidlaw & Baikie, 2007). While older people are living longer they are generally remaining healthier with an increase in percentage of life lived with good health (WHO, 2002). There has also been a Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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change in the leading causes of death, with death occurring after chronic rather than acute disease. The three major causes of death are cancer, heart disease and stroke (Sahyoun et al., 2001). As the age of a person increases so does the likelihood of developing a chronic medical condition. Thus it is probable that when working with an older person, therapists are likely to see clients with at least one chronic medical condition and many will have multiple conditions such as arthritis, hypertension, heart disease, cataracts, or diabetes. Often older people enter therapy and state that a lot of their problems are to do with their age or they have lived too long, although research with older people without depression suggests a much more positive attitude toward ageing (Laidlaw et al., 2006). Given the changes in life expectancy, many older people will live much longer than their parents and their grandparents. At age 65 years, men have an estimated 15 years of life expectancy and women have an estimated 19 years of life expectancy (Kinsella & Velkoff, 2001). This can sometimes lead older individuals to expect that death is imminent when in fact they may have many years of healthy life ahead (see Laidlaw et al. 2006).

COGNITIVE BEHAVIOUR THERAPY Cognitive behaviour therapy (CBT) is the most extensively researched form of psychotherapy, with good evidence for its efficacy as a treatment for depression and anxiety (Butler et al., 2006). Likewise, CBT for depression in later life is probably the most systematically researched psychological treatment approach for use with older people (Laidlaw, 2001, 2003). Cognitive behaviour therapy (CBT) is probably best known in the form developed by Aaron T. Beck (see Beck, 1987, Beck et al., 1979) where the primary mode of effectiveness is driven by the identification and modification of dysfunctional negative automatic thoughts, beliefs, and behaviours (Beck, 1995) and where symptom amelioration occurs through cognitive restructuring and behavioural change (Clark et al., 1999). Simply put, in the Beck model of cognitive therapy (Beck et al. 1979), how people think, feel, and behave determines how they make sense of their experiences. In this model, thoughts are crucial for understanding the emotional reactions and behavioural responses in someone experiencing a depression. An example may be illuminative here. When your client reports feeling depressed it is important to explore the specific thoughts they may be experiencing alongside this feeling and the impact this has on their behaviour. For instance, thoughts may reflect some symptoms associated with depression such as hopelessness. So your client may think, ‘this therapy isn’t working for me and it never will.’ The client’s feelings may be sadness, anger and frustration (you may wish to ascertain the percentage strength of feeling associated with each of these emotions). In response, changes in behaviour will result in a reduction of activity levels further and clients may find it more difficult to persevere with their homework task (e.g. calling up a friend to meet for a coffee) as they feel hopeless about the possibility for change. From this example, it may be seen that behaviour in depression can reinforce beliefs evident in negative automatic thoughts and this can create a negative downward spiral that appears to confirm their thoughts as facts. Behaviours in depression are seen therefore as consequences of the negative automatic thoughts experienced in depression. Thus in CBT it is important that the ‘B’ is not overlooked. Thought identification can be used to educate the person about the interaction of thoughts and feelings but also to engage them in a dialogue about behaviour change in order to promote symptom change. In any case CBT is more

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than a talking cure; it must be active with the person actively working on their problems through homework exercises that test their thoughts and beliefs as a means of delivering symptom change. Therapists should note that as well as external barriers to change in treatment there are often internal barriers (such as hopelessness) that can be quite challenging to overcome. These can result in subtle and covert avoidance that can be very damaging to future progress in therapy. Thus while the CBT model of psychopathology is elegantly simple, this simplicity is deceptive and potentially bewildering as the application of CBT is much more challenging than the model would suggest. To do CBT well requires perseverance on the part of therapist and client alike. It requires using the cognitive and behavioural elements to promote thought restructuring and behaviour change. An important general aim of CBT is to equip clients to become their own therapists (Beck, 1995). Thus CBT provides the person with strategies and problem solving skills to identify and challenge negative or unhelpful thought-feeling-behaviour interactions and habitual idiosyncratic maladaptive patterns of responding to situations. Cognitive behaviour therapy uses a systematic and creative process that needs to be delivered at the person’s own pace. While there are many ‘cookbook’ guides to applying CBT, these can be sometimes unhelpful as they suggest a simplicity of approach that is incompatible with an idiosyncratically delivered treatment programme that is much more than a collection of techniques and thought diaries. Cognitive behaviour therapy explicitly sets out to understand the person’s world and a full understanding can only be achieved through careful and deliberate exploration augmented with a methodology that emphasizes a ‘test it out’ approach. Cognitive behaviour therapy educates, motivates and challenges the person to bring about symptom change. Understanding how individuals make sense of their experience means understanding them in context. With older people this can often mean that the CBT needs to be augmented by factors that influence people’s experience of ageing. Psychotherapists working with older people require an understanding of gerontology to achieve this understanding (see also Laidlaw, Thompson & Gallagher-Thompson, 2004).

EMPIRICAL EVIDENCE FOR COGNITIVE BEHAVIOUR THERAPY WITH OLDER PEOPLE Outcome research into the effectiveness of CBT with older people started with Gallagher and Thompson (1983) providing evidence that this form of psychotherapy was applicable and relevant to the emotional needs of older people. The first standardized application of CBT for late life depression can be traced back to 1981 when Dolores Gallagher-Thompson and Larry Thompson published their first treatment manual (Gallagher & Thompson, 1981). This manual was published within four years of the first randomized controlled trial of CBT (Rush et al. 1977) and it is all too easy to forget how pioneering the early work in CBT by Larry Thompson and Gallagher-Thompson was. Prior to their work, psychologists in the mid 1970s were mainly using behaviour modification techniques rather than cognitive and behavioural interventions when working with older people (Woods & Britton, 1977) and it was still commonly thought that psychotherapy would be ineffective and irrelevant for use with older people (L.W. Thompson, personal communication). Gatz et al. (1998) reviewed the empirical evidence for the psychological treatment of older adults. This review was wide ranging and adopted criteria originally generated as

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part of an initiative developed by the Division of Clinical Psychology of the American Psychological Association for determining the effectiveness of psychological treatment interventions in adult mental health settings. Gatz et al. (1998) concluded ‘The evidence with respect to older adults is that cognitive therapy and CBT are probably efficacious treatments for depressed community-dwelling residents who are cognitively intact, have minimal comorbid psychopathology, and are not suicidal.’ A number of more recent review studies have concluded with a high degree of consistency that CBT is an efficacious treatment for late life depression (Frazer, Christensen & Griffiths, 2005; Karel & Hinrichsen, 2000; Laidlaw, 2001; Powers et al., 2002; Satre, Knight & David, 2006). In addition a number of meta-analytic studies have also achieved a remarkable degree of consistency on the efficacy of psychotherapy with older people. Probably the most cited is that reported by Scogin and McElreath (1994), the first meta-analysis of the efficacy of psychosocial treatments for late life depression. It was developed in response to the NIH consensus statement in 1991 that had concluded that there was limited supporting evidence for psychotherapy as a treatment for late life depression. Zeiss and Breckenridge (1997) suggest that the NIH conclusions were reached on the basis of poor consideration of the available data. Scogin and McEleath (1994) produced effect sizes for treatment versus no treatment or placebo that were substantial but despite the clear superiority of psychological treatments versus no treatment, there was no evidence to support the superiority of any single psychological treatment modality, with many treatments equally successful in treating late life-depression. Laidlaw (2001) has argued that the meta-analysis by Scogin and McElreath (1994) was very broad and potentially overinclusive and that combining markedly different treatments (psychodynamic psychotherapy and behaviour therapy) together to derive a single composite measure of effect was unjustifiable. Nevertheless, Scogin and McElreath (1994) produced a timely and comprehensive analysis demonstrating the efficacy of psychosocial treatments for older adults at a time when this was being questioned (Zeiss & Breckenridge, 1997), therefore challenging psychiatric orthodoxy regarding the efficacy of psychotherapy with older people. Koder, Brodaty and Anstey (1996) produced a very focused evaluation of cognitive therapy as a treatment for late life depression, and identified seven treatment comparison studies published from 1981 to 1994. Koder et al. (1996) report mean effect sizes of 0.41 (small to moderate) in favour of cognitive therapy compared to psychodynamic psychotherapy in four studies. A mean effect size of 1.22 (a large effect) in favour of cognitive therapy compared to a waiting-list control group was reported in two studies. Given that such a small number of studies were included in their calculations, the results should be seen as provisional. Koder et al. (1996) correctly concluded that while there were too few studies of sufficient scientific and methodological merit upon which a definitive conclusion could be reached over the relative efficacy of cognitive therapy over other treatment modalities, cognitive therapy is nevertheless an effective treatment procedure for late life depression. Engels and Verney (1997) reviewed 17 psychological outcome studies for late-life depression published from 1974 to 1992. The mean effect size calculated in this meta-analysis was of moderate size (0.63); although lower than other reported effect sizes, on average older adults receiving psychosocial treatment for depression are better off than 74% of older people not receiving treatment. Cognitive therapy and behavioural therapy were the most effective treatments with mean effect sizes of 0.78 and 0.85 respectively (0.80 is considered a ‘large’ effect size). Engels and Verney (1997) note that individual therapy is more efficacious than group therapy for late life depression with older adults, with individual therapies

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reporting a mean effect size of 0.76 and group treatments reporting a mean effect size of only 0.16. Cuijpers (1998) carried out a meta-analysis of the effectiveness of psychological outreach programmes for depression in older people. Cuijpers (1998) noted that the mean effect sizes of the psychological treatments for late life depression (0.77) were similar to effect sizes quoted by Scogin and McElreath (1994). Given that this meta-analysis shared similar studies with Koder et al. (1996) and Engels and Verney (1997) it is not surprising that similar effect sizes are computed. Also of note is the finding that group treatments have a high risk of dropout. Combined with the findings of Engels and Verney (1997) it would seem that individualized psychotherapy is to be preferred to group-based psychotherapeutic interventions with older people. Cuijpers, Van Straten and Smit (2006) reanalysed a meta-analysis using only studies that adopted a randomized controlled trial methodology; they identified 25 separate studies and calculated an overall effect size of 0.72, which is considered a medium-to-large effect size. There were no significant differences in effect size when comparing psychotherapy to pharmacotherapy. Consistent with previous meta-analyses of psychotherapy in later life, Pinquart and Sorensen (2001) in their meta-analysis of 122 separate studies also identified that individual rather than group-based psychotherapy interventions were more effective with older adults, as were interventions with participants who were diagnosed with major depressive disorder compared to participants without depression. Cognitive behaviour therapy was considered to produce above average effect sizes on depression; a fact attributed to the work by Thompson and colleagues in adapting CBT for use with older people and because of the focussed nature of interventions on participants’ current problems. Interestingly, Pinquart and Sorensen (2001) noted that therapists with advanced professional qualifications and specific training in geropsychology or experience in working with older people were more effective than therapists with advanced degrees but no gerontology or geriatric experience. Thus Pinquart and Sorensen (2001) conclude that theoretical qualifications are not sufficient to guarantee success in psychotherapy with older adults, additional geropsychological or geriatric training is therefore recommended. An important question is whether antidepressant medication and psychotherapy differ in effectiveness as a treatment for late-life depression. Recent meta-analyses suggest that effect sizes between pharmacotherapy and psychotherapy do not differ significantly (Gerson et al., 1999; Pinquart, Duberstein and Lyness, 2006). Conclusions regarding the effectiveness of psychosocial/psychotherapy treatments as a whole are much easier to reach than conclusions about the differential effectiveness of psychological treatments for late-life depression. While it is certainly the case that meta-analytic data suggest that psychological treatments are an effective procedure for older people with depression, it is hard to state with any precision that any one specific therapeutic modality is more effective than any other. However, most meta-analyses suggest that cognitive behaviour therapy is an effective treatment approach to reduce depression in later life and some suggest a statistical advantage for CBT compared to other forms of psychological intervention (Pinquart, Duberstein & Lyness, 2006; Pinquart & Sorensen, 2001). Perhaps the most interesting conclusion reached by the meta-analyses is that group based treatments are less effective with older people and there are larger attrition rates than with individualized treatment. As Karel and Hinrichsen (2000) note, some older people may feel more uncomfortable with the process of group therapy and it may not be flexible enough to meet the cognitive and emotional needs of all older participants. The most obvious conclusion to draw at this stage is that there is simply not enough psychological research in late-life depression to draw firm conclusions about the differential

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effectiveness of various psychosocial treatments and about other important questions such as the age and physical health status of participants. Additionally, as Karel and Hinrichsen (2000) and Nordhus and Pallesen (2003) have pointed out, the majority of research has so far been conducted on healthy, community residing older adults. For many clinicians working in the field this brings into question the generalizability of research findings with the population they may find themselves working with. Thus, whilst CBT for late life depression is an efficacious treatment choice it cannot be said that empirical evidence suggests superiority over other forms of psychotherapy for late life depression.

THE APPLICATION OF CBT WITH OLDER PEOPLE Cognitive behaviour therapy is particularly appropriate as an intervention for older adults because it is skills enhancing, present-oriented, problem-focussed, straightforward to use and effective (Glantz, 1989; Laidlaw et al., 2003; Steuer & Hammen, 1983; Thompson, 1996; Zeiss & Steffen, 1996). Working with older people in therapy can be different from working with younger adults in two important respects; longevity of problems and the likelihood of chronic physical illness. The longevity of problems can be a pitfall for many novice therapists working with older people. Often in an attempt to fully conceptualize a person’s problems, a lot of sessions are devoted to the historical background to the problems. It is common for older people to present with histories of depression and anxiety problems stretching back 60 years or more into early adulthood, or even in some cases into childhood. When therapists spend a lot of time on past issues they are often able to identify causal factors. While this may be satisfying, it is nonetheless sometimes irrelevant to the current problems older people are experiencing. It is common for therapy to lose focus and for the therapist and client to lose their way if they are not present-oriented and problem focused. It is much better when dealing problems with longevity to focus instead on maintenance factors. For example, Mrs D presented at my clinic with severe generalized anxiety disorder (GAD). She had a long history of this stretching throughout most of her adult life. In early sessions she often wished to focus discussion on what she thought were the important causal factors for her anxiety problems; namely a dysfunctional family history. It became evident however that she had repeated this behaviour with a great many therapists for over 50 years. She was very sophisticated in her psychological appraisal but her current problems were always slow to respond to intervention. In our sessions I pointed out to Mrs D that she was repeating old habits and instead of cause it may be more productive to focus on the factors that maintained her problems. These included avoidance behaviour (taking well-trodden paths in therapy is a covert form of avoidance), reassurance seeking and reducing her involvement in activities that focused her mind. In this case, focusing on factors that maintained her anxiety rather than factors that may have caused it was productive, effective and maintained a focus on symptom reduction. Mrs D experienced a very large decrease in her anxiety levels to the extent that she was able to take a family holiday abroad for the first time in her life. A rough guide here may be that when clients present with a long history, if they have extensive experience with other therapists and healthcare professionals, it may be more effective for treatment interventions to focus on maintenance factors rather than causal factors. In many respects older people come into therapy for the same reasons that younger people do, such as relationship problems and difficult life transitions (Knight, 2004). With older

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people, however, the relationship issue may be with an adult child and the transitions due to changed circumstances are often as a result of the loss of a spouse or the onset of disability (their own or that of their spouse). Sometimes the complexity of problems that older people bring to therapy can be daunting and overwhelming to novice therapists simply because they are unused to working with older clients and lack knowledge about normal ageing (Knight & Satre, 1999). It is not surprising therefore that many therapists have thought that therapy must be adapted for use with older people; however, there is a great deal of individual variation in this section of the population (Laidlaw et al. 2003; Steuer, 1982; Steuer & Hammen, 1983; Zeiss & Steffen, 1996) so modifications may not always be necessary. The required modifications may simply be to change the pace and length of treatment sessions (Grant & Casey, 1995; Zeiss & Steffen, 1996) rather than modifying the structure or treatment interventions used in CBT. Cognitive behaviour therapy with older people is an active, directive, time-limited, and structured treatment approach whose primary aim is symptom reduction (Laidlaw et al., 2003). This definition can be useful when working with older people as it can help maintain the focus on the outcome of therapy. Therapists may find it useful to ask themselves: if the aim of therapy is symptom reduction how are the interventions used within sessions promoting this aim? A treatment package of CBT can be considered to have three distinct phases: early, middle and late (Dick, Gallagher-Thompson & Thompson, 1996; Laidlaw et al. 2003). In the early sessions, the person is educated about the process of therapy and socialized into a specific way of data gathering and self-monitoring. Socializing the person into psychotherapy means addressing such issues as the person’s expectations for therapy, working collaboratively in a problem-solving way and eliciting the person’s active role in the treatment. Commonly, a full course of CBT is considered to last for about 16 to 20 sessions (Dick et al., 1996) but, as these guidelines usually come from research studies, in routine clinical practice it should only be considered a rough guide. Regardless of number of sessions, CBT is a brief form of psychotherapy with an expectation (which should be communicated to the person) from the start that treatment will terminate once symptom reduction has been achieved. It is often helpful and reassuring to the person if you agree to review therapy progress after six sessions. This emphasizes the symptom- and problem-focused short-term nature of the intervention. All too often it is unclear to the client or even the therapist when the end of treatment has been reached, because there has been a failure early on to agree goals for treatment outcome. In the early phase of treatment, however, setting up a working therapeutic relationship is perhaps the most essential task for the therapist. Unless a trusting, safe environment has been established it is unlikely that progress towards a successful resolution of goals will be achieved. Ideally, by the end of the third session of therapy, a problem-list will be drawn up and agreed between therapist and client. The problem list should contain a maximum of three items translated into goals and aims for therapy. Goals should be relevant, specific, measurable, time-limited and achievable (Coon & Gallagher-Thompson, 2002). During the middle phase of CBT treatment most time is spent on dealing with negative automatic thoughts. The person is taught self-monitoring skills to identify thoughts that are associated with negative mood and maladaptive behavioural response. During this phase of therapy the person is taught how to identify negative thoughts and then to challenge them. In this phase of therapy, the emphasis on psychoeducation moves from discussing depression or anxiety toward a discussion of how thoughts, feelings and behaviour interact and how this is relevant to the person’s current problems.

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Identifying and challenging negative automatic thoughts is termed cognitive restructuring and a common method of doing this is to use a dysfunctional thought record (DTR). The DTR is a form that has space for the person to record their thoughts, feelings associated with their thoughts and rational responses to these thoughts. There are very many versions of DTRs in CBT textbooks (see Beck et al., 1979; Laidlaw et al., 2003). It is the experience of this author that DTRs are generally poorly applied in practice and poorly complied with as homework tasks. Completing a DTR is a complex skill that therapists must master as well as clients. It is helpful to acknowledge with the person that identifying and challenging negative automatic thoughts is difficult. We are after all asking our clients to think about their thinking, often for the very first time. With practice this is a skill they can master and once learned will reduce their symptoms of depression as well as potentially reducing their risk of further episodes of depression in the future. Clients who are more skilled at the use of DTRs tend to have lower rates of relapse (Greenberger & Padesky, 1995). To help the person master the use of DTRs it can be helpful to simplify the process as much as possible as this will speed up the acquisition of this skill. If weekly activity schedules have been used in early sessions, these can be useful for identifying negative thoughts especially if the therapist has asked the person to rate their activities for enjoyment or pleasure on a 0–7 scale, with a zero rating indicating no enjoyment at all and a rating of 7 indicating maximum levels of enjoyment. It is common that different activities at different times provide different enjoyment ratings and these can be examined for thoughts about these activities. The enjoyment ratings for activities can be used within session to infer and discuss what sorts of thoughts were associated with the activity and what was it about these activities that merited the ratings given. It also introduces the notion that behaviour and mood are linked. From this stage, the introduction of a simple three-column DTR can be used, with columns allowing description of situation, thought and feelings. From these forms, the therapist and client can graduate up to use more complex forms and the skill of cognitive restructuring can be more easily mastered. The middle phase of therapy also sees the development of a shared conceptualization or understanding of the idiosyncratic nature of the person’s problems. In this phase of therapy, the covert issues underlying overt problems such as symptoms may be highlighted and discussed. In the final phase of therapy, two main tasks remain to be accomplished; (1) the agreement of an appropriate termination point for therapy and (2) the elaboration of a relapse prevention plan. Relapse prevention helps clients identify and anticipate potential high-risk situations that may trigger a relapse (Overholser, 1998) As a relapse is unlikely to result from a single situation, the therapist works with the client to anticipate how they might respond to certain stressors and to imagine possible strategies they may employ to help them manage. It is important that the relapse prevention plan is at least role-played with the person before discharge. The idea that relapse prevention is another opportunity to employ problem-solving skills learnt in therapy may reduce the anxiety associated with any anticipated negative events. It is also useful for the therapist to educate the client that life is never without its ups and downs and that clients may experience challenging situations that do not necessarily indicate a return of their symptoms. Overholser (1998) suggests using the term ‘lapse’ to promote realistic expectations. As the end of therapy can be an anxiety provoking time for the person, it can be helpful to engage the person in actively reviewing what he or she has learned from therapy and to list what strategies have worked well for them. This can become an important homework

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task for the client to work on. Agreeing upon a termination date is important so that if necessary fears of the client can be addressed prior to discharge and if necessary a schedule of intermittent or booster sessions can be agreed upon. This can be useful in a number of ways. It allays the fears that the person may have about dealing with problems alone, allows a longer time span to work on their problems and identifies potential obstacles; these can be discussed at the end of therapy prior to termination. In the lead up to discharge the person can become more confident as their mood levels are maintained despite longer gaps between therapy sessions. Cognitive behaviour therapy helps clients reduce levels of distress by teaching simple strategies such as looking for alternative explanations to their automatic thoughts; examining the evidence for and against their automatic thoughts; and testing out their beliefs and their assumptions. A complete discussion of the techniques of CBT is outwith the scope of this chapter but they are discussed in fuller detail elsewhere (see Laidlaw et al., 2003).

STRUCTURE IN CBT WITH OLDER PEOPLE There are a number of specific structural elements to CBT that can sometimes be challenging to apply with older people. Secker, Kazantzis and Pachana (2004) comment that researchers and authors have focussed less on the structure of CBT with older people. It is important to consider structure when applying CBT with any client group as CBT has a definite set of elements that are unique to this form of psychotherapy. Many therapists decide to pick and choose what aspects of the structure of CBT they will accommodate in their practice but this is always a mistake as it potentially reduces the efficacy of this treatment and can result in confusion and dissatisfaction with this treatment modality on the part of the therapist and client. However, consistent with Beck (1995), the important structural elements of CBT are as follow:

r the use of an agenda at the beginning of every session; r the use of homework after every session; r the incorporation of Socratic questioning and guided discovery to support exploration in session and collaborative empiricism;

r the importance of measurement across sessions; r the use of conceptualization or formulation within therapy. A short consideration of the use of specific structural elements in CBT with older people now follows: Agreeing an agenda at the start of therapy ensures that a consistent focus is maintained upon the person’s main problems. This can be especially useful for maintaining a working focus in sessions with older clients who may otherwise do a lot of storytelling during sessions or, because of immediate memory problems, become sidetracked when talking. In many cases, therapists not wishing to appear disrespectful will allow the client to talk without interruption, often losing the focus entirely. However, by referring to the agenda and using some humour to avoid interruptions being perceived as rude, older people can be helped to stay on track with information in session (Zeiss & Steffen, 1996). A clear agenda at the start of therapy is best achieved through a collaborative process between therapist and client.

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Therapists can sometimes worry that agenda setting is clumsy and interrupts the flow of what the person will say at the start of the session. A good probe question when agreeing an agenda with a client is to ask, ‘How have you been since the last time we met?’ When working up an agenda, therapists might like to try saying to the client that, in order to make the most of the one-hour session you have with them, you want to make sure you are talking with them about the issues that are most important to them. Usually an agenda for the session can be discussed and agreed within three minutes at the start of the session. Once the agenda has been agreed it is always important for the therapist to check with the person that the agenda covers the most important issues they are dealing with currently. For example, a therapist might say ‘If we talk about these issues today is there anything important that we would miss out? Are we covering the problem areas in your life right now?’ A typical agenda for a session of CBT may consist of the following items; discussion of homework task, bridge between sessions (what has the person thought about what was discussed last time), and a discussion of current main topic(s)/problem(s). Homework is the cornerstone of any successful CBT treatment (Coon & GallagherThompson, 2002). The progress that is made out-of-session can only be achieved through homework tasks that are relevant to the problem that has brought the older person to therapy in the first place. It is important that homework tasks are seen as helpful in all eventualities. A no-lose philosophy is adopted where the therapist helps the client to see that whether homework is successful or unsuccessful then something important is always learnt in the process. Homework can be poorly complied with in therapy, perhaps because homework is all too often vague in terms of task specifics, does not often follow after a discussion within therapy and is therefore confusing for the person (Kazantis, Pachana & Secker, 2003). The therapist’s main range of control in homework compliance is in the assignment of the task in the first place and therefore great care must be exercised in the negotiation and discussion of the planned homework (Tompkins, 2002). All too often, novice therapists are inclined to rush homework assignment by leaving it to the last few minutes of a treatment session, however, in reality homework can be set within a session at any time that it naturally arises as a topic to be tested out (Persons, 1989). If the therapist is curious about the outcome of homework and transmits this curiosity with an appropriate measure of enthusiasm and reinforcement then homework completion may be more likely (Tompkins, 2002), it is much more likely that homework will be complied with if it is always the first item to be discussed in session (Coon & Gallagher-Thompson, 2002). This is collaborative empiricism in action. There are a few ‘golden’ rules about the use of homework in CBT:

r Never leave the assignment and discussion of homework till the end of the session. r Always discuss homework as the first item at the start of each session or else the person will think homework tasks are not that important.

r Start small with homework assignments. At the start of therapy homework is more likely r r r r

to be data gathering and behavioural and at the end of therapy homework is more likely to be cognitive and reflective. Always present homework as no-lose scenarios. Never have a homework task ‘prefabricated’ before the person enters their session. Never ask a client to do something you would not be willing to do yourself. A rationale must be self-evident to the therapist and if necessary translated to the client. Homework is based upon agreement and collaboration and the potential obstacles to the successful completion of homework are discussed within session prior to task completion.

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r Homework tasks should always be relevant to the person and connected in some way with the topic of the session or the treatment programme. Communication styles of older people may sometimes require CBT therapists to take a much more directive stance in therapy. The challenge here is to maintain, at the same time, a collaborative stance synonymous with the principles of CBT. It is also a challenge, therefore, to use Socratic-type questions that allow clients to come to new understandings about their problems. Frequent use of summarizing statements to signal that you are following what the person is saying and that it is making sense can give a client tremendous encouragement to continue to reveal more about their personal circumstances. It can also give the person a growing sense of confidence that they can process information in new ways and deal with the more abstract aspects of CBT such as Socratic questioning. In an excellent illustration of collaborative working, Zeiss and Steffen (1996) encourage a multi-modal presentation of information, termed ‘say-it, show-it, do it’ that includes discussion, modelling and practice within session. Cognitive behaviour therapy can be distinguished from other forms of psychotherapy because it is explicitly explorative rather than interpretative. CBT places emphasis on the empirical investigation of the person’s thoughts, appraisals, inferences and assumptions. What this means in practice is that CBT therapists must put aside all assumptions when trying to understand the nature of a person’s problems and when listening to their attributions for events. Not relying on one’s assumptions about what a client says requires the therapist to adopt a Socratic type of dialogue in therapy using explorative open-ended questions. This is easier said than done as it can often seem as if there may only be one explanation for an event. An example may illuminate this point. Mrs K was a carer for her husband who had dementia. He would often ask the same question repetitively and this used to result in Mrs K getting angrier and angrier with her husband each time he asked the same question. Many therapists would assume that the anger was a function of frustration on Mrs K’s part; in this case however an explorative approach brought about an interesting clarification. When the therapist asked Mrs K what was it about the repeated questions that made her so angry, she replied, ‘he is just asking me this to wind me up, he’s doing this to make me lose my cool’. When the therapist explored with Mrs K an alternative explanation for the cause of these questions, it was only after careful consideration of alternatives that Mrs K was able to see that her husband’s dementia may have caused him to forget that he had already asked the question. Furthermore, he tended to ask the same question over again when he and Mrs K were going out. Thus it was possible that anxiety may in some way have contributed to the repetitions and, importantly, it was non malicious on his part. Using Socratic questioning about the meaning of the repetitious questioning was effective in this case. The use of Socratic questioning in therapy needs to be applied sensitively because clients often assume that the therapist knows the ‘correct’ answer but is withholding until they have ‘guessed’ it (Bishop & Fish, 1999). This is not the case, Socratic questioning does not involve following a ‘roadmap’ i.e. taking a patient from their perspective about situations to a ‘right’ answer (from A to B). Instead Socratic questioning involves a joint process of discovery where the destination and elements of the journey are unknown at the outset (from A to wherever). Collaborative empiricism is an important element of CBT with older people engendering a spirit of working together to inquire about the nature and extent of the client’s problems. If therapists working with older people maintain a loss-deficit model of ageing (see Knight 2004; Knight & Satre, 1999) this can bias a therapist into expecting poorer outcomes and

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the therapeutic alliance will suffer. Consequently therapy becomes much more passive and less directive with the result that therapy drifts and sessions become confusing, ineffectual and frustrating for both therapist and client alike. This can make therapy a disheartening experience where therapist and client are negatively reinforced regarding psychotherapy with older people and where both come to believe that old age is a depressing time of life and the situation really is unchangeable and hopeless. As older people may be accustomed to adopting a passive recipient role in any dealings with health professionals this can make the situation much more likely to have negative consequences. It is because of this that collaborative empiricism is such an important tool in CBT with older people. Testing out what a client can do is as likely to educate the therapist about what older people can achieve as it can teach the client. Often clients have unrealistic expectations for change that may in the early stage of therapy interfere with the process of recovery. Often clients will monitor their progress, but, as they are still depressed, the amount of progress made is reviewed extremely negatively. It is therefore extremely important to build in some monitoring or evaluation method from the first session onward. Measurement of change can be achieved in a number of different ways such as using standardized questionnaires, for example the BDI (Beck, Steer & Brown, 1996), or the GDS (Yesavage et al., 1983) or even diary forms that record more individualized data. An extremely useful tool to evaluate progress, especially in the early stages of therapy is the weekly activity schedule (WAS). This is a simple diary that clients use to record their activity level in any given week. The client can usually see the sense in finding out about a person’s activity level when they are depressed or anxious. It can be given out after the first session as homework and can perform a very useful dual function of recording activity levels and orienting clients into an important part of therapy: completion of homework. The WAS can be used in therapy to compare activity levels at midway with those at baseline. It is very common that activity levels have increased in number and breadth. It can be very encouraging to the person to see this progress as it appears an unbiased factual record of progress. The person can then be introduced to a Socratic discussion about rate of progress. It may be useful to ask ‘When you are feeling frustrated about your perception of lack of progress and you see these records, what sense do you make of this?’ This can be followed up by asking the person, ‘What does it tell you about your perceptions or your thoughts?’ and ‘looking at these records, is there anything surprising you notice?’ Bringing data to the attention of clients is not enough, it is important to help the client process this information using Socratic type questions. The use of conceptualizations is a way of understanding the idiosyncratic nature of the person’s difficulties that simultaneously affords the therapist with predictions about the potential pitfalls that may lie ahead. Standard CBT conceptualization frameworks, such as those proposed by Beck et al. (1979), can sometimes be too narrow in their focus to meet the needs of older people. In response, Laidlaw, Thompson and Gallagher-Thompson (2004) developed a comprehensive conceptualization framework (CCF) as a way of contextualizing older adults’ problems within CBT while linking this to interventions that may be necessary to optimize treatment outcome (see Figure 27.1). The main elements of the CCF are cohort beliefs, role transitions, intergenerational linkages, sociocultural context and health status. Each element serves to broaden the understanding that a therapist will draw on when working with older people (see Laidlaw, Thompson & Gallagher-Thompson, 2004). In effect the CCF is a contextualizing model that takes account of the issues that face older people as they age. For a more in-depth account of this model and its application

Activating events The Diathesis that may cause person’s current episode of illness.

Behavioural

Physiological

The strategies that may assist an individual to effectively manage the impact of a potentially limiting chronic and/or deteriorating condition are summarised by the use of: selection, optimization and compensation (Baltes, 1991).

Health Condition (s): The impact of health conditions can be understood at an individual level by understanding the interaction of impairment, disability and handicap (WHO, 1980).

Affective

Cognitive

DEPRESSION

Negative automatic thoughts Content of a person’s thoughts. Reflecting negative view of self, future and world (cognitive triad).

Compensatory strategies Coping strategies and mechanisms that allow an individual to function in the world despite the presence of latent maladaptive beliefs and rules.

Conditional beliefs/underlying assumptions Idiosyncratic rules person uses to understand and react to events.

Core beliefs Rigidly held beliefs that may predispose for depression.

Early experiences Idiosyncratically important formative events.

Figure 27.1 CBT conceptual framework for older people.

The changes and adaptations older people may have to consider to maintain the activities and interests that are personally meaningful and relevant to an individual’s valuation of the quality of life.

Transitions in role investments

The beliefs shared across a generation of people born in similar years of time periods. Consider also the potential for stress between different generations in terms of beliefs and value systems.

Cohort beliefs

The internalization of societal beliefs about ageing and older people. The person’s own attitudes towards ageing. The examination of the social stereotype of ageing.

Socio-cultural context

The importance of family and the transmission of idiosyncratic family values . The importance for generativity between one generation to the next.

Intergenerational linkages

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in therapy interested readers are referred to Laidlaw, Thompson and Gallagher-Thompson (2004).

SUMMARY Knight (2004) notes that therapists unused to working with older people often believe that older people are unlikely to benefit from psychotherapy. Perhaps because of Freud’s assertion that older people lack the mental plasticity to change or to benefit from psychotherapy, this is a commonly held belief (Pinquart & Sorensen, 2001). Clinical psychologists have tended to ignore and avoid the needs of this population group; the pervasive notion that the complex presentations of psychological problems in later life result in less likelihood of meaningful clinical change and progress has led to an expectation that psychological treatments are not applicable to older adults. Nonetheless, experience leads those of us in this area to be more optimistic and enthusiastic about the range of benefits older people derive from psychotherapy. Particularly useful is the recognition that continued development and growth and change are normative across the entire lifespan (Sugarman, 2001). Cognitive behaviour therapy with older people is often thought to require adaptations, in terms of its concepts, procedures and intervention techniques, in order to render it applicable for use with older people. Early writers on this subject questioned whether the use of cognitive restructuring and the use of forms such as the DTR would be applicable with older people (Church, 1983, 1986). This has resulted in a general sense that CBT as it stands is largely in need of adaptation in order to be successfully applied with older people. This is a misconception as shown by the fact that randomized controlled trials of standard CBT with older people record similar outcome to those of younger adults (Laidlaw, 2001). However, the issue of adaptations and modifications within therapy with older people is a complex one and too often therapists have used modifications without thought to gerontology or science (Laidlaw, Thompson & Gallagher-Thompson, 2004; Satre, Knight & David, 2006). The application of CBT with older people leaves the therapist with the same challenges as those faced by any other psychotherapist working with older people, that of applying psychology in the face of often long-term problems, problems of physical health co-morbidity, realistic and challenging life transitions. The experience of therapists working with older clients is likely to result in a two-way learning process about therapy in later life and the ageing experience (Satre, Knight & David, 2006). The collaborative stance of CBT is particularly helpful when working with older people as it encourages respect for the years of life-experience of the individual. Cognitive behaviour therapy is a form of therapy that is particularly applicable to meet the needs of older people, as it is problem focused, skills enhancing and deals with the here-and-now of situations.

REFERENCES Beck, A.T. (1987). Cognitive models of depression. Journal of Cognitive Psychotherapy: An International Quarterly, 1, 5–37. Beck, A.T., Rush, A.J., Shaw, B.F. & Emery, G. (1979) Cognitive Therapy of Depression. Guilford, New York. Beck, A.T., Steer, R.A. & Brown, G.K. (1996). The Beck Depression Inventory-II. Psychological Corporation, San Antonio TX. Beck, J.S. (1995) Cognitive therapy: Basics and beyond. Guilford, New York.

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Bishop, W. & Fish, J.M. (1999) Questions as interventions: perceptions of Socratic, solution focused and diagnostic questioning styles. Journal of Rational-Emotive and Cognitive-Behavior Therapy, 17, 115–40. Butler, A.C., Chapman, J.E., Forman, E.M. & Beck, A.T. (2006) The empirical status of cognitivebehavioral therapy: a review of meta-analyses. Clinical Psychology Review, 26, 17–31. Church, M. (1983) Psychological therapy with elderly people. Bulletin of the British Psychological Society, 36, 110–12. Church, M. (1986) Issues in psychological therapy with elderly people, in Psychological Therapies for the Elderly (eds I. Hanley & M. Gilhooly). Croom Helm, London. Clark, D.A., Beck, A.T. & Alford, B.A. (1999) Scientific Foundations of Cognitive Theory and Therapy of Depression. Guilford, New York. Coon, D.W. & Gallagher-Thompson, D. (2002) Encouraging homework completion among older adults in therapy. JCLP/In Session: Psychotherapy in Practice, 58, 549–63. Cuijpers, P. (1998) Psychological outreach programs for depressed elderly: a meta-analysis of effects and drop-out. International Journal of Geriatric Psychiatry, 13, 41–8. Cuijpers, P., Van Straten, A. & Smit, F. (2006) Psychological treatment of late life depression: a meta-analysis of randomized controlled trials. International Journal of Geriatric Psychiatry, 21, 1139–49. Dick, L.P., Gallagher-Thompson, D. & Thompson, L.W. (1996) Cognitive-Behavioural Therapy, in Handbook of the Clinical Psychology of Ageing (ed. R.T. Woods). John Wiley & Sons, Chichester. Engels, G.I. & Verney, M. (1997) Efficacy of nonmedical treatments of depression in elders: a quantative analysis. Journal of Clinical Geropsychology, 3, 17–35. Frazer, C.J., Christensen, H. & Griffiths, K.M. (2005) Effectiveness of treatments for depression in older people. Medical Journal of Australia, 182, 627–32. Gallagher, D.E. & Thompson, L.W. (1983) Effectiveness of psychotherapy for both endogenous and non-endogenous depression in older adult out-patients. Journal of Gerontology, 38, 707–12. Gallagher, D. & Thompson, L.W. (1981). Depression in the Elderly: A Behavioral Treatment Manual. University of Southern California Press, Los Angeles. Gatz, M., Fiske, A., Fox, L.S. et al. (1998) Empirically validated psychological treatments for older adults, Journal of Mental Health and Aging, 4, 9–46. Gerson, S., Belin. T.R., Kaufman, M.S. et al. (1999) Pharmacological and psychological treatments for depressed older patients: A meta-analysis and overview of recent findings. Harvard Review of Psychiatry, 7, 1–28. Glantz, M. (1989) Cognitive therapy with the elderly, in Comprehensive Handbook of Cognitive Therapy (eds A. Freeman, K.M. Simon, L.E. Beutler & H. Arkowitz). Guilford, New York. Grant, R.W. & Casey, D.A. (1995) Adapting cognitive behavioral therapy for the frail elderly. International Psychogeriatrics, 7, 561–71. Greenberger, D. & Padesky, C.A. (1995) Manage your Mood. Guilford Press, New York. Karel, M.J. & Hinrichsen, G. (2000) Treatment of depression in late life: psychotherapeutic interventions. Clinical Psychology Review. 20 (6), 707–29. Kazantzis, N., Pachana, N.A. & Secker, D.L. (2003) Cognitive behavioural therapy for older adults: practical guidelines for the use of homework assignments. Cognitive and Behavioral Practice, 10, 324–32. Kinsella, K & Velkoff, V.A. (2001) An Aging World: 2001, US Government Printing Office, Washington DC. Knight, B. (1999) The scientific basis for psychotherapeutic interventions with older adults: an overview. Journal of Clinical Psychology, 55, 927–34. Knight, B. (2004) Psychotherapy with Older Adults, 3rd edn. Sage, Thousand Oaks. Knight, B. & Satre, D.D. (1999) Cognitive behavioral psychotherapy with older adults. Clinical Psychology: Science and Practice, 6, 188–203. Koder, D.A., Brodaty, H. & Anstey, K.J. (1996) Cognitive therapy for depression in the elderly. International Journal of Geriatric Psychiatry, 11, 97–107. Laidlaw, K. (2001) An empirical review of cognitive therapy for late life depression: does research evidence suggest adaptations are necessary for cognitive therapy with older adults? Clinical Psychology and Psychotherapy, 8, 1–14. Laidlaw, K. & Baikie, E. (2007) Psychotherapy and demographic change: Nordic Psychology, 59, 45–58.

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Laidlaw, K., Power, M.J., Schmidt, S. & the WHOQOL Group (2006) The attitudes to ageing questionnaire (AAQ): development and psychometric properties. International Journal of Geriatric Psychiatry, 21, 1–13. Laidlaw, K., Thompson, L.W., Dick-Siskin, L. & Gallagher-Thompson, D. (2003) Cognitive Behaviour Therapy with Older People. John Wiley & Sons, Chichester. Laidlaw, K. Thompson, L.W. & Gallagher-Thompson, D. (2004) Comprehensive conceptualization of cognitive behaviour therapy for late life depression. Behavioural and Cognitive Psychotherapy, 32, 389–99. Nordhus, I.H. & Pallesen, S. (2003) Psychological treatment for late life anxiety: An empirical review. Journal of Consulting and Clinical Psychology, 71, 643–54. Overholser, J.C. (1998) Cognitive-behavioral treatment of depression, part X: reducing the risk of relapse. Journal of Contemporary Psychotherapy, 28, 381–96. Persons, J.B. (1989) Cognitive Therapy in Practice: A Case Formulation Approach. W.W. Norton, New York. Pinquart, M., Duberstein, P.R., Lyness, J.M. (2006) Treatments for later-life depressive conditions: a meta-analytic comparison of pharmacotherapy and psychotherapy. American Journal of Psychiatry, 163, 1493–501. Pinquart, M. & Sorensen, S. (2001) How effective are psychotherapeutic and other psychoscial interventions with older adults? A meta-analysis. Journal of Mental Health and Aging, 7, 207–43. Powers, D.V., Thompson, L.W., Futterman, A. & Gallagher-Thompson, D. (2002). Depression in later life: epidemiology, assessment, impact, and treatment, in Handbook of Depression (ed. I.H. Gotlib & C.L. Hammen). Guilford, New York, pp. 560–80. Rush, A.J., Beck, A.T., Kovasc, M. & Hollon, S. (1977) Comparative efficacy of cognitive therapy and imipramine in the treatment of depressed outpatients. Cognitive Therapy & Research, 1, 17–37. Sahyoun, N.R., Lentzner, H., Hoyert, D. & Robinson, K.N. (2001) Trends in causes of death among the elderly. Aging Trends, 1, 1–9. Satre, D.D., Knight, B.G. & David, S. (2006) Cognitive-behavioral interventions with older adults: Integrating clinical and gerontological research. Professional Psychology: Research and Practice, 37, 489–98. Scogin, F. & McElreath, L. (1994) Efficacy of psychosocial treatments for geriatric depression: a quantitative review. Journal of Consulting and Clinical Psychology, 62, 69–74. Secker, D.L., Kazantis, N. & Pachana, N.A. (2004) Cognitive behavior therapy for older adults: practical guidelines for adapting therapy structure. Journal of Rational-Emotive Cognitive-Behavior Therapy, 22, 93–109. Steuer, J.L. (1982) Psychotherapy with the elderly. Psychiatric Clinics of North America, 5, 199–213. Steuer, J.L. & Hammen, C.L. (1983) Cognitive-behavioral group therapy for the depressed elderly: issues and adaptations. Cognitive Therapy and Research, 7, 285–96. Sugarman, L. (2001) Life-span development: frameworks, accounts and strategies (2nd edition). Psychology Press, East Sussex. Thompson, L.W. (1996) Cognitive-behavioral therapy and treatment for late life depression. Journal of Clinical Psychiatry, 57 (suppl. 5), 29–37. Tompkins, M.A. (2002) Guidelines for enhancing homework compliance. JCLP/In session: Psychotherapy in Practice, 58, 565–76. WHO (2002) Active Ageing: A Policy Framework. World Health Organisation, Geneva. Woods, R.T. & Britton, P.G. (1977) Psychological approaches to the treatment of the elderly. Age & Ageing, 6, 104–12. Yesavage, J.A., Brink, T.L., Rose, T.L. et al. (1983) Development and Validation of a Geriatric Depression Screening Scale. Journal of Psychiatric Research, 39, 37–49. Zeiss, A. & Breckenridge, J. (1997) Treatment of late life depression: a response to the NIH consensus conference. Behavior Therapy, 28, 3–21. Zeiss, A.M. & Steffen, A. (1996) Treatment issues with elderly clients. Cognitive and Behavioral Practice, 3, 371–89.

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Psychoanalysis and old age Rachael Davenhill Tavistock Clinic, London, UK

INTRODUCTION Psychoanalysis offers a conceptual framework for understanding the impact loss has both on the person who is older and also for the worker or family member in contact with the older person. It gives a powerful lens through which to view the opportunities and challenges of ageing and allows the clinician to make sense of and work with anxieties that may be aroused at both a conscious and unconscious level when coming into contact with a person who may be the same age as the clinician’s own parents or grandparents. Individual workers may be trying to separate from their own families of origin, starting their own families, or perhaps feel sandwiched between caring both for young children and older parents and it is often the case that working in old age settings will evoke feelings with regard to separation and dependency (Martindale, 1989). Empirical research supports the effectiveness of psychodynamic psychotherapy with older adults, with an evidence base ranging from single case studies and clinical reports describing intensive psychoanalysis and psychoanalytic psychotherapy with patients at the beginning of, and throughout, the twentieth century (Abraham, 1919; Cohen, 1982; Coltart, 1991; Davenhill,1989; Grotjahn,1940; Hagglund,1980; Hess,1987; Jaques,1965; King,1974, 1980; Limentani,1995; Martindale,1989; Nemiroff & Colarusso, 1985; Pollock, 1982; Sandler, 1978, Segal, 1958; Wylie & Wylie, 1987) to randomized controlled trials at the end (Gallagher & Thompson, 1982; Gallagher, Thompson & Steffen, 1994). Erikson (1959, 1966, 1980) developed stage theory across the lifespan, with Joan Erikson (1998) adding a ninth stage as life expectancy has increased in developed countries, with many more people entering very old age in better physical and mental health than at any other time in history. In terms of severe depression and other complex and enduring mental health problems in old age, Richardson and Hobson (2000) point out that ‘all the therapies are in the same boat . . . although we have some very encouraging findings on treatments, we don’t yet know enough about their clinical effectiveness . . . and must go on collecting the relevant evidence’. However, in terms of enduring mental distress recent studies indicate that a psychodynamic approach has reduced the need for inpatient treatment, GP consultations and medication (Guthrie et al., 1999; Stevenson & Meares, 1992).

Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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Woods and Roth (2005) list a number of factors that may contribute to the low rate of referral of people who are older for a psychological therapy approach, including anxieties on the part of the therapist and poor diagnosis of depression in primary care settings, leading to overprescribing of antidepressant medication and an underreferral of people who are older to psychological therapy or psychotherapy services. In the past there have certainly been resistances by psychotherapy services as well as by individual clinicians in terms of a reluctance to take older people into treatment (Walker, 1999; Murphy, 2000). When this has been examined further, workers have often expressed anxiety about working with a client group so much older than themselves with whom they may have had little direct contact as a result of the current false dichotomy between ‘adult’ and ‘old age’ services. Older people are a clear receptacle for negative projections regarding ageing, illness and death – areas that younger clinicians may very much want to keep at a distance in terms of their own fears and anxieties. All these of course are facts of old age, but not the only facts in terms of the potential for psychic development and creativity right up until the very end of the life.

CORE CONCEPTS Freud thought that nothing that existed in the unconscious ever ultimately lost its influence on the personality and he introduced a number of key ideas, which are important for understanding the way in which early infantile anxieties may emerge throughout the lifespan, right through to old age at times of transition and pressure. From the very beginning of life the baby is relating or being related to by his or her caregivers and the quality of the relationship between carer and care recipient at this point and other key points throughout the lifespan is relevant to how the challenges of old age can be weathered (McCarthy & Davies, 2003). Early deficits can be ameliorated but emotional drought early on can leave its residues, which may filter through at later points. Freud thought this could be seen, experienced and hopefully understood within the therapeutic relationship. He was interested in exploring the interaction and ongoing oscillation between the internal and external worlds of the individual and referred to this relationship as psychic reality. One of his most important psychoanalytic concepts was that of the transference. Here, early patterns of relating (usually to the parents or primary caregiver at the beginning of life) are repeated and can be experienced and thought about in the therapeutic relationship (Freud, 1914). The framework provided by formal psychodynamic psychotherapy can provide a safe setting within which the repetition, which, by its very nature, is enacted again unconsciously, can be experienced and understood in the living relationship between therapist and patient. The capacity to take in unconscious forms of communication requires a state of mind that can take in and digest the other person’s emotional state. Here the clinician tries to resist the more usual ‘skills-based’ mode of functioning, based on ‘doing’ or ‘servicing’, and moves toward a mode of functioning based on taking in and understanding the other person’s emotional experience, following which a further developmental process is hopefully released or regained.

Container-Contained: A Key Concept for Dementia Care Wilfred Bion was a psychoanalyst who thought the template for the carer/caregiver relationship was embedded in the earliest experiences between baby and mother/caregiver. His

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theory of ‘container-contained’ (1962) is one of the most important areas of contemporary psychoanalytic theory bridging early life and late life and is an extremely important concept for clinicians involved in the direct development of effective treatment interventions in old age. Bion’s work is of direct relevance for understanding the caregiving relationship in dementia and is valuable in supporting clinicians working with older people (who may be unable to verbalize their experience) in giving meaning to communications that often take place at a nonverbal level. Bion suggested that a key element in responding to a baby’s distress is for the adult to be able to take in, experience and transform the distress so that the baby is able to reincorporate the feelings in a benign form. If the baby experiences the mother as unwilling or unable, for whatever reason, to receive, assimilate and digest his or her projections, this can lead either to an escalation in the infant’s attempts to make ever more frenetic and violent attempts to ‘get through’ to mother or primary caretaker, or alternatively, a possible withdrawal into a state of more depressed despair. In Britain in recent years there has been a ‘quiet revolution’ (Clare, Baddeley, Moniz-Cook & Woods, 2003) in dementia care and a fundamental shift and emphasis in the cathexis of old-age research and clinical practice toward taking in and giving meaning to the experience of both the older person and the carer. The capacity for clinicians to sense needs accurately, to experience for themselves the anxieties and feelings of someone else, to understand these and respond to them in an appropriate way finds its prototype in a good enough relationship between a mother and baby, but this relationship is potentially present in every human relationship. This process is an important aspect of what is known as countertransference (Heimann, 1950) and can be an extremely useful tool in enabling the clinician to understand the subtle communication that can occur in therapeutic and other relationships. Winnicott (1952) wrote that ‘there is no such thing as a baby without a mother . . . There is no such thing as an infant, meaning of course that whenever one finds an infant one finds maternal care’. In old age there is no such thing as an older person without an interpersonal context in terms of the unit of relatedness, whether within a family or continuing care setting. Kitwood (1997) and Sixsmith, Stilwell and Copeland (1993) refer to the process of ‘rementing’ in dementia where a partial recovery of capacity can be shown by the person with dementia when the holding environment is sufficiently stable in terms of the quality and consistency of physical and emotional needs being actively engaged with and met in the context of the relationship between the person needing care and the caregiver. A psychoanalytic approach would see the person who is older very much within the context of both interpersonal and intrapsychic relationships. It offers a way of looking in depth at the qualities, limits and developmental capacities within those relationships, and emphasizes the constant oscillation and interaction between internal and external.

PSYCHOANALYTIC INTERVENTIONS IN PUBLIC SECTOR SERVICES Assessment Various factors may contribute to the onset of depression in old age. Bereavement, illness, falls and retirement can all serve as triggers for a referral for assessment for psychotherapy. A psychodynamic approach to assessment will involve the clinician trying to put together the unconscious landscape of the each individual’s internal world in the first instance which,

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in the case of the older person, may have received scant attention when so much emphasis is placed on the external (Garelick, 1994). Hinshelwood (1991) delineates three core situations relevant to any psychodynamic assessment. These are:

r the current life situation (in terms of the way the patient describes current relationships); r the infantile object relationships as described in the patient’s history and background; r the relationship with the assessor in the here-and-now movement of the transference/ countertransference during the assessment consultation. By working across all three dimensions, the therapist is attempting to avoid any preconceptions in order to remain open to the template of relationship the patient is describing, but may not be conscious of, as it manifests itself in the ‘here and now’ of the assessment situation. This can then be thought about and talked about with the patient as one means of assessing whether the patient is curious about and wants to explore further the less obvious, unconscious patterns and pressures that may inform their current distress or not.

Clinical illustration Mr T talked non-stop in a highly pressurized way in his first assessment meeting, moving rapidly from one subject to another. When the therapist did attempt to say anything Mr T either ignored her or dismissed what she was saying in a highly contemptuous manner. The therapist reported her feelings of being completely wiped out by the end of the first meeting. However she was then able to use her countertransference response as a means of starting to develop a psychodynamic formulation of Mr T’s difficulties. Rather than try and make sense of the content of all he had said she attempted to look at the function of his pressure of speech. She felt he was in the grip of something quite manic and felt this more manic flow of words protected him from coming into contact with areas much more painful. She realized he had said nothing in the first meeting about the death of his wife some months previously, and in this way it became possible for her to understand the manic flow as a defence against depression. She was able to use her initial feeling of being wiped out during and after the meeting with Mr T in their second assessment session by talking with him about how wiped out he had felt by the death of his wife. The mourning process had been further complicated because of the highly ambivalent relationship between Mr T and his wife when she had been alive, which led to complications in terms of normal mourning.

Individual Psychotherapy Brief individual psychodynamic psychotherapy with an experienced clinician is an effective treatment of choice for depression in old age (Gallagher-Thompson & Steffen, 1994) and is as relevant, if not more relevant, to people in the second part of the lifespan in terms of their motivation toward and capacity to make use of what is sometimes referred to as the ‘talking cure’ (Hildebrand,1982, 1986; Porter, 1991). Psychoanalytic therapy has also been used in the early stages of dementia (Sinason, 1992). The problems of loss and separation are often at the forefront of the older person’s preoccupations when presenting for treatment, where

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often the central problem may be one of failed mourning. Freud’s radical foundation for the understanding of melancholia was laid in his 1917 paper ‘Mourning and Melancholia’ where he wrote: ‘. . . the shadow of the object fell upon the ego, and the latter could henceforth be judged by a special agency, as though it were an object, the forsaken object’ and later in ‘The Ego and the Id’ (Freud, 1923): ‘The fear of death in melancholia only admits of one explanation: that the ego gives itself up because it feels hated and persecuted by the object, instead of loved. It sees itself deserted by all protecting forces and lets itself die.’ Freud’s clarification of the role of unconscious hostility and resultant sense of guilt, and his development of the patient’s unconscious identification with and incorporation of the lost object (person), has remained central to a psychoanalytic understanding of abnormal grief. Within the public sector, the length of psychoanalytic psychotherapy treatment can vary from brief treatment which can range from 6-16 sessions, to longer term once weekly treatment of between 1-2 years duration. In Britain, brief psychotherapy was originally developed by Malan (1979; 1995), and taken forward into the specialism of old age by Hildebrand (1982, 1986), who pioneered 16-session brief treatments with older patients referred to the mainstream adult psychotherapy service at the Tavistock Clinic in London. Other models of brief psychotherapy have been developed by Davanloo in terms of intensive short-term psychodynamic psychotherapy (ISTDP) and Sifneos (1972, 1992) with shortterm anxiety provoking psychotherapy (STAPP) both of which take a more confrontational approach to the patient. Molnos (1995) has drawn on and expanded all three of the previous approaches. Luborsky (1984) and Luborsky and Crits-Christoph (1990) have focused on the core conflictual relationship, whereas Strupp and Binder (1984; 1991) have examined repeated maladaptive relationship patterns. The work of psychoanalytic psychotherapy is to work in the transference and countertransference and locate the defensive structure and underlying unconscious phantasy that may come in the form of, for example, a particular symptom or difficulty in relating. The defence serves to keep at bay anxieties at a much deeper level. The therapist will seek to understand and interpret both the defence and the underlying anxiety as the main focus of their work with the patient.

Clinical example Mrs Y was a 69-year-old depressed woman who had been seen for psychological interventions on a number of occasions all of which she felt had failed. Her central complaint to the referring GP and therapist with whom she started individual psychotherapy was that ‘No-one can do anything to help me.’ By paying careful attention to the patient’s transference and using her countertransference response, a small but significant shift took place in Mrs Y’s abstract sense of grievance when it became possible to see the way in which a re-enactment of a much earlier experience was taking place again, as it had so many times before in previous treatments, where both therapist and patient ended up feeling hopeless. This time however, Mrs Y’s therapist was able to make use of this affective response of hopelessness such that it eventually became possible for Mrs Y to describe the way in which following the death of her brother as a little girl she had felt helpless when she was unable to lift her parents out of their melancholic state of depression. Not only had she lost her brother but also her parents who were unable to hold their daughter’s grief in mind and help her with it, when so consumed by their own. It was important for Mrs Y to have a therapist

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who could remain open to this projection of her own unbearable feelings of hopelessness and helplessness and continue to think about them with the patient rather than feel she, the therapist, really was hopeless.

Couples Psychotherapy The psychoanalytic study of marriage and partnership is highly relevant in informing clinical interventions with couples who are older, with research indicating that older people lacking a loving relationship report higher rates of depression and anxiety (Anderson & Stevens, 1993). In dementia care the lack of positive interactions between partners where one has a dementia has been shown to be predictive with regard to the move to hospital care and even the death of the partner with dementia two years later (Wright, 1991, 1994). In the UK, the formal development of couples therapy started in 1948 when Enid Balint founded the Family Discussion Bureau, later known as the Tavistock Institute of Marital Studies (now called the Tavistock Centre for Couple Relationships), which, in its emphasis on the unconscious conflicts and wish for resolution in couples seeking help, has based its work on contributions from attachment and object relations theory (Balint 1993; Bion 1961; Bowlby 1988; Klein 1940, 1946; Winnicott 1971, 1974). In the assessment of couples for couples therapy, Crandell and Fisher (2001) draw on attachment theory and on patterns of attachment delineated by Ainsworth’s Strange Situation Test (SST) (Ainsworth et al., 1978) and Main’s Adult Attachment Interview (AAI) with its shift to the level of mental representation of attachment (Main, 1995). They expect to be able to identify a number of possible patterns of relationship, including secure couple attachment, insecure couple attachment, dismissing/dismissing couple attachment, preoccupied/preoccupied couple attachment and dismissing/preoccupied couple attachment (Clulow, 2001). The interaction between the couple provides the focus of the therapeutic work, and the ‘patient’ as such is the couple relationship rather than each individual in the couple. The usual model of work is for the older couple to see two therapists who work together as a therapeutic couple. The framing of the work with couples is based on a number of key concepts including the following.

Shared unconscious phantasy The intimacy of the couple relationship and the fears that may be aroused with increased dependency needs in old age may revive primitive anxieties in each member of the couple stemming from the earliest object relationship, that of mother and baby. According to Ruszczynski (1993), ‘From the very beginning, the infant is a subject taking the mother as his object of attachment. But the mother in her own right is also a subject and takes the infant as her object of care and concern. A complex interaction, therefore, goes on between the two, and within that, adaptive and defensive processes of each are geared in with those of the other and have to function in relation to the other (Bannister & Pincus, 1971). The nature of this first object relation becomes a prototype for all subsequent childhood and adult relationships.’ One aspect of couples treatment is to locate and think with the couple about the shared unconscious phantasy, which usually centres on an infantile terror in which the couple

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develop a shared system of defences as a way to protect themselves from fear and anxiety. ‘The purpose of the therapeutic work is for the couple to face in the consulting room and in their relationship with the therapist/s, these early anxieties, in order that they can begin to understand how they use each other to avoid their own difficulties’(Amos & Balfour, 2007).

Marital fit Here partners will ‘fit’ into each others needs in a way that maintains their own individual equilibrium. The constant use of projective and introjective processes ensures that partnership patterns in adult life satisfy a number of emotional needs, not just for love and dependency but also to deal with unwanted and difficult aspects of the personality. Marital fit is used as an unconscious contract by the couple at both a developmental as well as a defensive level. Pincus (1960) observed two main types of defensive pattern within intimate partnerships. The first is based on partnerships in which one member of the couple seems to have one set of characteristics and the other the opposite, as if one is only complete with the other. The second is based on projection where, for example, the marriage seems to be a cocoon into which the couple retreat, and all areas of difficulty are externalized and projected outside the marriage. Both patterns carried to an extreme can lead to a loss of individuality, with the inevitable difficulties in mourning following the death of one member of the couple in terms of unresolved issues regarding loss and separation.

Group Psychotherapy Group treatment has many advantages as an evidence-based treatment of choice (Roth & Fonagy, 1996) for people who are older suffering from depression and/or anxiety who may have longstanding difficulties in their family history and interpersonal relationships, or who may have become increasingly isolated following the death of spouse, siblings and/or friends. Group work with carers of and people with dementia is increasingly being recognized as a crucial component in any dementia care service (Cheston, 1998; Cheston, Jones & Gilliard, 2002). There is a strong psychoanalytic framework supporting the development of formal psychoanalytic psychotherapy, which stemmed initially from the work of psychoanalysts during and after World War Two. Detailed observations of groups of soldiers in military hospitals were undertaken and various experimental small and large groups started, which ultimately informed and led onto the development of the therapeutic community movement in the NHS (Bion, 1961; Foulkes, 1964; Main, 1977). There are increasing numbers of accounts of the benefits of group work (Canete, Stormont, & Esquerro, 2000; Evans, Chisholme & Walsh, 2001; MacLennan et al., 1988; Goodman, 1988; Hunter, 1989; Martindale, 1995; O’Rourke and Hadjistavropoulos, 1997; Woods and Roth, 2005), along with an emphasis on training and appropriate supervision for staff running groups (Sproul-Bolton, Nitsun & Knowles, 1995). The smallest of all groups is three and the earliest group at the start of life involves the parental couple and new baby (Garland, 2006; 2007; Nitsun, 1989). Within this triangle any observer will be able to see that each member of the group has an individual relationship to the other two members and each member at times will be excluded by the other two (for example the partner may feel excluded by the breast-feeding mother, or at another point

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the baby will become enraged if mother’s attention moves back to her partner). Each baby in the course of development will have his or her own responses to the experience of being included or excluded and this is important in the basic structuring of mental life. In old age similar dynamics are evoked both in carer and cared for and unless the basis of such feelings are understood staff within, for example, a care setting will remain mystified at the strength of feeling the person who is older may express when feeling side-lined. Similarly feelings of rage and jealousy may be aroused in a carer who sees their parent or spouse receiving specialist care when they themselves receive no such attention and are expected to carry on the task of caring often in terrible states of isolation. Garland (2007) points out that: In every group there are three protagonists: the individual member, the group therapist, and the group itself, reflecting the triangularity of the primary group. Understanding the triangular and shifting nature of relations between the three parties is an important part of the work of group therapy. . . the kind of dependency that great age can bring with it revokes many infantile feelings and unresolved infantile conflicts, which may well be lived out in relation to family and to care staff. When no one understands the origin of such feelings and impulses, neither the older person, the professional carer nor the family, such aggressive or perhaps sexual behaviour may evoke bafflement and hostility.

She also points to another form of group which may then be needed in terms of a work discussion group for staff: Workers need a chance to express their puzzlement and resentment at those who can react violently to their ministrations, or who become very regressed and infantile when the transference is more positive. Understanding something of the origins of the behaviours they are exposed to may help them cope with it better. This is part of the purpose of groups for both staff and patients.

Garland (2007) highlights three features basic to any group, which relate to territory, time and task, emphasizing how important it is for the therapist to feel confident in the value of the treatment they are offering. She summarizes her review of the key benefits of group psychotherapy as follows: i) Expressed/shared vulnerability can provide both a source of comfort and strength. The sense of isolation and shame that may attach itself to needing help and treatment can diminish in the presence of other people facing similar difficulties. ii) Dependence upon the therapist alone is diminished because of the existence not only of fellow patients, but of ‘the group’ itself. Dependence on ‘the group’ can often be tolerated where dependence on the therapist is resented and denied. Group patients are strikingly able to bear plain speaking from fellow members better than they can from a therapist. iii) Patients lacking psychological mindedness may still gain from the internalisation of others’ curiosity about motive, impulse and feeling. Over the course of time, a distaste for psychological insight can diminish to reveal a real sensitivity, often defended against for years. iv) The process of ‘objectification’ – discovering what is in oneself through first seeing and understanding it as it takes place between others – is immensely helpful when it comes to helping patients to ‘see’ what part they play in their own difficulties. v) The group offers a particular structure in which each member is not only a patient, but is also part of others’ treatments, and is in this sense also capable of coming to function as the therapist does. In psychoanalytic terms, this acts to reduce the envy of the breast

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as the provider of all goodness, since each patient is both baby and also part of the breast that nourishes and supports the other babies. Psychic nourishment is easier to take in when one may also be capable of providing it for others. vi) The capacity to see what is going on between others leads to an increased sensitivity to others’ difficulties, and an increased ability to respond flexibly to others needs. This increase in flexibility is both the outcome of a reduced tendency to project unwanted aspects of the mind and personality, and also in turn a cause of further reintrojection of split-off aspects of the self. As in all forms of analytic treatment, the re-introjection of lost parts of the mind leads to a greater mental capacity to tolerate pain and distress, and to a fuller and more rounded personality.

Training In working alongside staff in old age settings and attempting to identify distortions that have an unconscious basis and may undermine the overt work task, a number of basic questions arise, including:

r What are we trying to do? r How are we doing it? r Why are we working the way we are? r What can we do about it? Traditionally there has often been a tendency to locate the problem or deficit within the staff team but a psychoanalytic approach to training and consultation places centre stage an ongoing and active collaboration with the staff group whereby staff are both the main resource and a central part of the solution. One of the central challenges in the area of education and training in the field of old age is the inherent contradiction of trainings driven by a skills and competencies framework. This implies that if people have skills they can fix things and it is often driven by short-term initiatives. There is a need for good training in terms of the basics of physical health care for older people but old age as a fact of life cannot ultimately be fixed (albeit with advances in health care longevity may be extended) and the issue of how best to support staff working with older people with mental and physical health needs in the area of continuing care remains writ large. This has important ramifications for models of training with workers in the field of old age and mental health where, in terms of equal weightings, there is still a long way to go in taking seriously not just the emotional needs of the person who is older, but the emotional needs of staff. In every enquiry into abusive practice in continuing care practice, poor staff morale and isolation are high on the list of contributing factors. Support for staff may be recommended but the way in which this is implemented varies enormously (Garner & Evans, 2000). The active containment of staff needs can make an enormous difference and requires a strong system of management that contains within it space for uncertainty as a necessity not a luxury or ‘add on’ (Davenhill, 1998). This can take place through a weekly staff group with an external facilitator whose primary task is to enable staff to carry on with their work task. Here the everyday demands of the job can be shared and will involve understanding and digesting unconscious as well as more obvious material (Ardern, Garner & Porter, 1998; Ashburner, Meyer & Cotter, 2004; Holman & Jackson, 2001; Martindale,1989; Stern & Lovestone, 2000; Terry, 1997).

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One approach to postqualification multidisciplinary training in working with older people taken at the Tavistock Clinic draws both on open systems and psychoanalytic thinking to look at the individual, the group and the organization. It emphasizes the constant interaction between internal and external factors as a means of understanding mental and physical health difficulties arising in old age. The assumption is made that all staff have an institutional base and this in itself can make it hard to really observe and understand the institution the staff member is a part of. A worker in a particular institutional setting will inevitably be caught up with both the anxieties and the organizational defences that are brought to bear against anxiety. Obholzer (2000) points out that staff may go about their everyday work ‘irradiated with distress’ at times and require a secure enough base within which to process their experience when having to deal with the raw emotional states of both patients and staff with whom they work. The problem of creating such a base can be understood when looking at the impact task-related anxiety has on the individual and the organization (Jaques, 1965; Menzies-Lyth, 1988). Here the unconscious anxieties and defences evoked through repeated exposure to the ‘raw material’ in any organization are examined in detail: This approach can be called a psychological health approach to secure practice based on an understanding of unconscious processes. Just as in public health there is an awareness that there are specific risks inherent in certain manufacturing processes (for example in miners resulting from breathing coal dust), so, too, one might assume that there are similar processes at work in institutions offering to help others. Practitioners are susceptible to, and need to be aware of, the ‘psychic dust’ that, symbolically speaking, arises from their work. This dust creates anxiety, the presence of which generates the need for a secure base. (Obholzer, 2001)

A key research and learning tool for understanding the ‘psychic dust’ specific to the experience of old age is that provided by the psychodynamic observational method (Bick, 1987; Davenhill et.al., 2003; Hinshelwood & Skogstad, 2000; Mackenzie-Smith, 1992; Rustin & Trowell, 1991; Waddell, 2002). This is a specific training and research method from the Tavistock Clinic, which allows a deepening and integration of the observer’s thinking regarding an emotional understanding of very early states of mind and its relevance for the anxieties and developmental possibilities and limits of old age. Whilst it may be complementary to reflective practice or dementia care mapping, it is quite different from them in terms of its capacity to articulate aspects of unconscious as well as conscious lived experience in old age settings. In dementia care mapping the observer is ‘looking in’ to observe the quality of care in a particular environment. In psychodynamic observation, observers are looking at their own subjective experience of what it is possible to observe, take in and think about at both a conscious and unconscious level. The aim of the observation is to allow the observer to come close to the older person’s experience and develop an attuned capacity to see and retain detail. It takes place within the framework of a rigorous and supportive framework, which allows the observational experience to be examined and understood in depth. The observation is usually undertaken for a year (although shorter periods of time can also be used) and takes place once a week for an hour within an old age setting such as a nursing or residential home, day centre, hospital ward, falls service, and so forth. No notes are taken at the time but observers will write a detailed account of what they have been able to observe immediately afterwards. Further processing of the observation will

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then take place in a weekly supervision group run by a psychotherapist or an experienced clinician trained in the psychodynamic observational method. Here, each member of the group is able to present an observation in detail on a rotational basis. The observational material is able to benefit from the associative process of each member of the group, which, taken together, form the group’s countertransference response. By making use of the group countertransference, a layering of access and sensitization to unconscious factors impacting on the emotional atmosphere surrounding the individual and their environment becomes available in a more digested form. The observer and other members of the group are enabled to learn in depth from their own experience about factors, conscious and unconscious, which can support or impede development and adjustment to transitions in the later part of life. In effect, observers are learning to develop their own capacity as internal consultants to the unconscious atmosphere of the observed setting, rather than relying on external feedback from without. Psychodynamic observation provides the individual worker with a powerful tool for understanding unconscious as well as conscious processes taking place in the world of both the older person and their carers. This understanding in itself can provide a strong containing function and is invaluable for key workers in enabling a depth understanding of their own and others’ responses to working with older people. Ultimately this provides an important bedrock which can be taken back and used in the workplace to develop and inform quality interventions at both a physical and emotional level with people who are older.

CONCLUSIONS This chapter has aimed to show the direct relevance of psychoanalytic concepts in providing a supportive framework for thinking about clinical work, which can be drawn on by people working in services for older people. This can enable workers to take account of unconscious factors impacting on whatever situation they may be facing, whether in direct treatment interventions such as assessment or individual or group psychotherapy, or for the purposes of consultation or organizational work. The importance of really taking account of the need to provide a space for staff to think about their work experience and the importance of ongoing work discussion groups in the workplace and in the context of further postqualification training has been highlighted as a necessity rather than a luxury in terms of continuing professional development, and is an integral part of ensuring safe practice and enhanced quality of care in services for older people.

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Foulkes, S.H. & Anthony, E. (1984) Group Psychotherapy: The Psychoanalytic Approach. Karnac, London. Freud, S. (1912) A note on the unconscious in psychoanalysis. Standard Edition 12:257. Hogarth Press, London. Freud, S. (1914) Remembering, repeating and working through. Standard Edition 12:147. Hogarth Press, London. Freud, S. (1915) The unconscious. Standard Edition 14. Hogarth Press, London. Freud, S. (1917) Mourning and melancholia. Standard Edition 11. Hogarth Press, London. Freud, S. (1923) The ego and the id. Standard Edition 20. Hogarth Press, London. Gallagher, D. & Thompson, L.W. (1982) Treatment of major depressive disorder in older adult outpatientswith brief psychotherapies. Psychotherapy: Theory, Research and Practice, 19, 482–9. Gallagher-Thompson, D. & Steffen, A.M. (1994) Comparative effects of cognitive-behavioural and brief psycho-dynamic psychotherapies for depressed family caregivers. Journal of Consulting and Clinical Psychology, 62, 543–9. Garelick, A. (1994) Psychotherapy assessment: theory and practice. Psychoanalytic Psychotherapy, 8(2), 101–16. Garland, C. (2006) The Groups Book: The Tavistock Approach to Group Psychotherapy. Karnac, London. Garland, C. (2007) “Tragical-comical-historical-pastoral”: groups and group therapy in the third age, in Looking into Later Life: a Psychoanalytic Approach to Depression and Dementia in Old Age (ed. R. Davenhill). Karnac, London, pp. 99–107. Garner, J. & Evans, S. (2000) Institutional Abuse of Older Adults. Council Report CR84. Royal College of Psychiatrists, London. Goodman, R. (1988) A geriatric group in an acute care psychiatric teaching hospital: pride or Prejudice? In Group Psychotherapies with the Elderly (eds B. MacLennan et al.). International Universities Press, New York. Grotjahn, M. (1940) Psychoanalytic investigation of a seventy one year old man with senile dementia. Psychoanalytic Quarterly, 9, 80–97. Guthrie, E., Moorey, J., Margison, F. et at. (1999) Cost-effectiveness of brief psychodynamicinterpersonal therapy in high utilizers of psychiatric services. Archives of General Psychiatry, 56, 519–26. Hagglund, T.B. (1980) The final stage of the dying process. International Journal of Psycho-Analysis, 62, 45–9. Heimann, P. (1950) On counter-transference. International Journal of Psycho-Analysis, 31, 81–4 . Hess, N. (1987) King Lear and some anxieties of old age. British Journal of Medical Psychology, 60, 209–15. Hildebrand, H.P. (1982) Psychotherapy with older patients. British Journal of Medical Psychology, 55, 19–28. Hildebrand, H.P. (1986) Dynamic psychotherapy with the elderly, in Psychological Therapies for the Elderly (eds I. Hanley & M. Gilhooly). Croom Helm, London. Hinshelwood, R.D. (1991) Psychodynamic formulation in assessment for psychotherapy. British Journal for Psychotherapy, 8(2), 166–74. Hinshelwood, R.D. & Skogstad, W. (2000) Observing Organisations: Anxiety, Defence and Culture in Health Care. Routledge, London. Hinze, E. (1987) Transference and countertransference in the psychoanalytic treatment of patients. International Review of Psychoanalysis, 14, 465–73. Holman, C. & Jackson S. (2001) A team education project: an evaluation of a collaborative education and practice development in a continuing care unit for older people. Nurse Education Today, 21, 97–103. Hunter, J. (1989) Reflections on psychotherapy with ageing people, individually and in groups. British Journal of Psychiatry, 154, 250–2. Jaques, E. (1965) Death and the midlife crisis. International Journal of Psycho-Analysis, 46, 502–14. King, P. (1974) Notes on the psychoanalysis of older patients: reappraisal of the potentialities for change during the second half of life. Journal of Analytical Psychology, 19, 22–37. King, P. (1980) The lifecycle as indicated by the nature of transference in the psychoanalysis of middle aged and elderly. International Journal of Psycho-Analysis, 61, 153–60.

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Systemic interventions and older people Alison Roper-Hall South Birmingham Psychological Services, Birmingham, UK

This chapter aims to provide an overview of, and guidelines for, systemic practice in relation to older people, moving between theory and practice and connecting with the literature about or relevant to systemic practice for older people. The intention is to create opportunities for readers familiar with work with older people to broaden their approach to consider as a focus for practice the social systems in which older clients exist; and for readers familiar with systemic ideas to broaden their thinking to consider families in later life and care systems for older people. The chapter also seeks to prompt ideas for developing an explicit evidence base for older adult systemic practice, which is currently limited. The chapter is organized using the distinctions of Approach–Method–Technique (Burnham, 1992), to raise the possibilities for developing systemic ideas in practice with older people and their families and other social systems at each level. By also considering influences and creative relationships between the levels, it can open possibilities for readers to make connections between the range of methods, techniques, and ideas in their current practice and systemic thinking and practice.

APPROACH Distinguishing approach from method and technique allows us to draw out the ideas, evidence, values, beliefs and preferences that inform and guide practitioners in their work. A systemic approach to work with older people employs a range of ideas, in common with systemic approaches in other areas. Since the Macy Conferences in the period following World War Two established the idea of transdisciplinary science pulling together, developing and applying systemic ideas across widely ranging spheres of human endeavour, systemic thinking continues to draw in and connect conceptual developments applicable to human systems. At its heart, general systems theory (Von Bertalanffy, 1968) attempts to explain, with universal principles, any complex system that consists of a large number of mutually interacting and interrelated parts, in terms of those interactions. The social systems older Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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people find themselves to be part of, or strive to maintain, are as fine an example of this as any other complex system. Key theories that have influenced or have been influenced by systems theory include:

r Cybernetics (Wiener, 1950) with the notion of feedback loops, which introduced circular

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logic against the tide of linear thinking in positivist science. The self-regulating aim of a system is seen to minimize the deviation between the perceived situation and the desired situation. Bateson’s theories of mind (1972, 1979). Perhaps his most famous adage was his definition of information as ‘a difference that makes a difference’, indicative of his original notions of mind, communication and meaning. The double bind theory (Bateson et al., 1956), based on contradictory injunctions in different levels of communication, also shows his approach to the complexities of human communication. General semantics (Korzybski, 1951). The central concept, that ‘perception always intercedes between reality and ourselves’, emphasizes the degree to which human experience is filtered and mediated by neurosensory pathways and human linguistic constructions. The most important premise of general semantics has been succinctly expressed as ‘The map is not the territory; the word is not the thing defined.’ Bowen’s family theory (Bowen, 1978) sees the family as an emotional system, making a radical departure from seeing emotion only as an intrapsychic phenomenon. The idea of connectedness (emotional and behavioural) and interdependent reactivity amongst family members means that a change in one person’s functioning prompts reciprocal changes in the functioning of others. Communication theory, according to Watzlawick (Watzlawick et al., 1967), defines five basic axioms necessary for functional communication: – One cannot not communicate. – Every communication has a content and a relationship aspect such that the latter classifies the former as a metacommunication. – Communication appears as a cyclic process in which the nature of the relationship is dependent on the interpretation each person has about him/herself and others involved. – Human communication involves both digital and analogue modalities, i.e. bits of information as in verbal content (digital), and information for example from posture, tone and pacing (analogic). – Interhuman communication procedures are either symmetric or complementary, depending on whether the relationship of the partners is based on differences or parity. Social constructionism. Berger and Luckmann (1966) developed their sociological theory of knowledge, proposing that people individually and together participate in the creation of their perceived reality. The theory proposes that human subjectivity imposes itself on those ‘facts’ we take to be an objective reality. Reality is seen as reproduced by people recursively acting on their interpretations and their knowledge of it in an ongoing, dynamic process. Put strongly, things exist only because people tacitly agree to act as if they exist. Radical constructivism (Von Glasersfeld, 1987) also takes the view that reality, our knowledge of the world, is constructed in social interaction. Autopoieses (Maturana & Varela, 1980). A structurally determined autopoietic (selfcreating) system renews and replicates itself in circular organization to maintain its components and wholeness. This whole living system is an individuated entity that is structurally coupled to the world in which it exists.

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r Catastrophe theory (Thom, 1989). A small perturbation in a system can unleash a massive effect. (for example, a domino effect or butterfly effect).

r Complexity and chaos theory (Gleik, 1987; Lewin, 1992) has an emphasis on the whole being greater than then sum of its parts but with an invitation to look at both. Making the paradigmatic shift through general systems theory and its progeny to consider the social, relational systems in which an older person lives helps to facilitate and enable alternative ways of thinking about reasons for referral to clinical services, and thereby alternative ways of intervening. It opens the path to consider intervention at multiple levels of system, from working with older people individually in a systemic framework (e.g. in relation to bereavement: Roper-Hall, 1998); working with couples with a focus for example on how they interact in relation to perceived problems (for example, on the impact of dementia on marital relationships: Baikie, 2002; Lewis, 1998); working with families in relation to shared concerns (for example, in old-age psychiatry services – Benbow et al., 1990; Gilleard, 1996); working with networks including older people, their family members and other informal and professional carers (Pottle, 1984; Roper-Hall, 1992); to working with health and social care systems organized to provide services for older people (Jeffery, 1986; Roper-Hall, 1987, 1993). When working at any of these levels, considering contextual influences of the other levels on the system in focus can broaden the possibilities for change. There are many things that persuade or sway us to a particular approach. It could be, for example, the evidence base, currently a dominant discourse in government policy, but it could be that the ideas ‘make sense’ or have a good fit with the values by which we understand human relationships, existence, contexts, and processes. The transformation for me, in the early 1980s when I began to develop these ideas in practice, had been from neurobiology with an understanding of feedback loops in neural pathways, the idea that no single neurone acts alone, being simultaneously modified by and modifying the activity of other neurones in the purpose of information processing and communication. Encountering systemic and social constructionist ideas in relation to human behaviour, and relationships as social communication, diverted my anticipated career course from neuropsychology to systemic psychotherapy! At that time, clinical psychology practice with older people seemed ripe for innovation and I was ready for trailblazing! Herr and Weakland’s book (1979) was the earliest reference that directly tackled the subject of therapeutic interventions with or about problems associated with older family members. Lieberman (1979) at the same time took a transgenerational view, widening the family therapy arena to take account of at least three generations. Most references in the field of systemic practice around that time showed the main application to be family therapy up to the family stage of ‘leaving home’, with the problem focus on the emergent generation. These nevertheless provided practical guides to systemic work in general (Burnham, 1986; Epston, 1989; Hoffman, 1981; Imber-Black, 1988; Palazzoli et al., 1980; Watzlawick, Weakland & Fisch, 1974; White, 1989). The process of transplanting these ideas into my work with older people generated a wealth of ideas for practice, and countered ageist notions prevalent in psychotherapy at the time of therapeutic nihilism, the idea that for older people it is too late for change. Feedback from numerous workshops I have led shows the relevance and potential for systemic thinking and intervention for a wide range of professionals working in health and social care systems for older people.

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Some of the perceived advantages for using systemic practice with older people include the following.

Information exchange Convening such a relational system in one room at the same time can be an intervention in itself (Pottle, 1984). It can provide wide sources of information into the therapeutic arena, not just for the therapist’s benefit but also for people in the social system to generate together a more comprehensive picture. Sharing perspectives offers opportunities to explore things taken for granted and construct ‘new’ information together.

Connectedness Working with family members and others can help to sustain and develop social connections within the significant relational system. Reconnection becomes more possible. Older clients may experience the presence of a familiar person supportive in a situation otherwise alien to them.

Interactive pattern The place an older client fits in their social system can be seen as well as heard. Patterns of interaction ‘in the room’ can become a focus for therapy.

Relational issues Problems for older people are problems for those close to them and/or involved in their care. A problem may be perceived by people other than the older client. Bringing them together enables relationship aspects plus any tensions or conflicts in the system to be addressed directly.

Resources Widening the meeting to include those with access to resources can stimulate positive and rapid action, by bringing people, including the older person, together into a decision making and planning arena (Dixon, 2002; Pottle, 1984). Widening the system widens the choices for direction of intervention. Co-constructing a new story can shift away from negative stories of blame and burden (Atwood & Ruiz, 1993; Kropf & Tandy, 1998). Doing this with a wide audience can more easily embed the new story in the wider system (White & Epston, 1991).

Influence on therapist/worker Having multiple perspectives enhances the kind of neutrality or multipartiality that encourages curiosity in therapy (Cecchin, 1987) and opens out possible views. It enables recognition of the clients’ and others’ expertise available to the therapeutic process.

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Conceptual Tools for Systemic Practice Hypothesizing, circularity, neutrality and curiosity The original three guidelines provided by the Milan Associates (Palazzoli et al., 1980) of hypothesising, circularity and neutrality remain valuable tools. They open up ideas towards what might be useful and fitting for clients, maintain circular logic and look for interactional patterns and remain open to multiple perspectives. Cecchin (1987), when revisiting these ideas, brought the notion of curiosity in therapy to the fore, leading to a concomitant shift away from therapy which relies on the expert knowledge of the therapist, to therapy as social construction in which the therapist offers expertise in enquiry that enables positive change to occur.

Coordinated management of meaning (CMM) The idea of therapy as social construction (see McNamee & Gergen, 1992) is supported through the social constructionist theory of the coordinated management of meaning (Pearce & Cronen, 1980). An application of this is to understand interactional patterns of communication and how meaning is co-constructed in conversation. It offers a framework useful in therapy for thinking about a range of interconnected levels of social context which have mutual contextual influences. This provides a basis for enquiry which in itself can be an intervention, as developed in the reflexive questions described by Tomm (1987a, 1987b, 1988). It enables a systemic therapist to focus on patterns of relationships between people, events and ideas, their culture, beliefs and experiences. Questioning that explores the reflexive connections between levels of context can open the possibility for new meanings to be co-generated and to promote self-healing. Roper-Hall (1998) applies CMM and gives clinical examples of this interventive interviewing in systemic practice with older people.

Social GRACES A significant aim in systemic therapy is to broaden existing views to consider contextual influences on issues of concern. Particularly important are various societal and cultural distinctions of social difference. The mnemonic acronym of Social GRACES (Roper-Hall, 1998) a development of Burnham’s DISGRACCE (Burnham, 1992) prompts thinking and questions about potentially important influences in clients’ lives and problems (see Fig. 29.1). Having this in mind can prepare the therapist to be more responsive to comments by clients that reflect these contextual influences of social difference. Using this as a prompt in my own practice has heightened my sensitivity to notice when to enter a discourse with clients about their experiences mediated through their gender, race, age, (including their own ageist attitudes, of which they may be a victim), culture, ethnicity, sexuality, spiritual beliefs, and to relate these to their reasons for being in therapy.

Therapist positioning, intent and influence Figure 29.2 provides a mental map that can be used to determine where the therapeutic conversation currently places those involved, and allows the therapist to consider where

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Social GRACES Power Relations in Society Values held by people in relation to social difference Potential to devalue according to difference

Spirituality Sexuality

Gender

Ethnicity

Colour

Race

Class

Religion Abilities

Culture

Age

Physical

Intellectual

Figure 29.1 Mnemonic Acronym to prompt therapeutic focus on the influence of social difference

it might be most helpful to move in the conversation next. It is based on Tomm’s ‘fourth guideline’ of strategizing (1987a) and his paper on therapist intent and assumptions (Tomm, 1988). The orthogonal graph is formed by crossing an axis of therapist intent (from orienting to interventive) with an axis of therapist posture (from assuming an objective reality to interest in constructed realities) and provides a map of positioning and influence of the therapist in action. The bottom left hand quadrant offers linear ‘factual’ information, allowing the clients to retell their story as it is. This can be beneficial for the clients as well as orienting for the therapist, particularly if they are hearing themselves articulate their concerns for the first time, or if it is the first time they have had an understanding ‘audience’ to their story. Usually this kind of conversation offers little room for change and can serve to embed a problem-saturated story (see White, 1989). Being in the top left-hand quadrant offers information about circular pattern and process. Relationships between people, events, and problems can be mapped out in the conversation using circular questions. This can be beneficial for clients who can begin to see their situation construed relationally, including externalizing the problem from a person (White, 1989), and seeing the problem as the problem, not the person as the problem. For the therapist the benefits are to see the process as well as the content of the clients’ concerns. This kind of conversation can shift thinking about the problem in new and enabling ways.

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Multiverse Pattern / Process Neutrality Circular Assumptions

Curiosity about connections

Curiosity about different meanings

Manoeuvrability Mobility Guide towards own resources

Self Healing

Facilitative

Interest in pattern

Orienting Intent

Descriptive information gathering

Therapeutic Intent

Interventive

Guide towards preordained solutions Assume Intrinsic Characteristics

Directive

Curative

Advice Interest in Linear ‘Facts’ Static ‘As is’

Assume a norm or normative values

Linear Thinking Judging Objective Reality Universe

Figure 29.2 Therapist Positioning, Intent, and Influence

Conversations in the bottom right quadrant tend to rely on the therapist’s knowledge about solutions to particular problems, and strong desires of the clients for ‘normality’. Intervention can be directive or strategic towards these identified goals, which can be coconstructed between the therapist and the clients. Conversations in the top right quadrant invite both therapists and clients to not know the answers to the problems but to have a willingness to construct through reflexive questioning alternative meanings, which offer greater manoeuvrability for change. I modified this orthogonal graph from Tomm (1988). I added the diagonal line from bottom left to top right with the initial idea that the therapeutic process moves from the ‘as is’ position where clients are ‘stuck’ in their story, onwards and upwards to the position of ultimate manoeuvrability where they can escape their difficulty. However on reflection this

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latter position, where ‘anything goes’ is one without anchor and potentially can be quite daunting to be in. Through applying the map in practice, I have come to realize that no one position is preferable overall to another; all are useful at different times, and the utility of therapy is in being able to move fluidly between positions with clients in the pursuit of positive change.

METHOD ‘Method’ here refers to the patterns in which we organize ourselves to think and act systemically in our practice. This includes how we arrange to meet with clients, how we meet agency expectations, how we manage our relationships with referrers, clients and colleagues. At the time of my initial forays in developing systemic practice with older people, the ethos in family therapy, strongly influenced by the Milan Approach (Palazzoli et al., 1980), was to organize as a team. This however was not possible for me as a lone worker in pioneering territory. I began with an identity of ‘a systemic practitioner in search of a team’

Defining Arrangements for Therapy Working as a team enables the approaches of meta-perspectives and double description to be put into practice. It promotes neutrality as values, experiences, and prejudices vary across the team. It widens the field of hypotheses, avoids ‘falling in love’ with a particular idea (see Boscolo et al., 1987), and leaves open to challenge assumptions that a therapist might otherwise make (Carpenter, 1993; Jones, 1993; Speed et al., 1982). A colleague at a National PSIGE conference circa 1985 disputed that I was doing family therapy because I was working solo. I had found that I couldn’t avoid using the ideas in my work even without a team, although I had been able to arrange good supervision. My colleague’s stance was to lay emphasis on the working method as the defining factor, while my developing identity as a systemic practitioner was experienced more at the levels of approach and technique. As more systemic therapists have found for various reasons that working effectively without a team is an option, these early developments by necessity represented a welcome departure from constraints of adopting a model strictly or in a pure form while still maintaining the opportunities of such an approach as fitting to local circumstances. In this way systemic approaches have developed in a wide variety of settings, including in multiple ways in care systems for older people, for example on wards and by hospital bedsides (RoperHall, 1987), in residential homes (Jeffery, 1986), for home visits (Roper-Hall, 1993) and in the development of family clinics (Marriott & Pickles, 1987; Roper-Hall & Everill, 2005). This departure simultaneously frees practitioners to meet clients where they are, opening therapeutic possibilities and freeing the developing field of systemic practice to think ‘outside the box’ in developing in other areas (reflecting the potential influence of method on approach). Cecchin, Lane and Ray (1992) have celebrated this kind of development as ‘irreverence’, and McNamee (2004) as ‘promiscuity’. Opening out the opportunities for working methods has implications for the nature of supervision. Working in teams creates a forum for live supervision at the time of seeing clients, with the usual technologies such as one-way screens and video recording.

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Older clients as a cohort may find this daunting and creating space for collaborative decisions with clients about working methods is an important part of systemic engagement. When describing the options with my usual care to one older couple, I found myself surprised when they said they were familiar with this way of working, as they had been involved previously when their daughter had been seen by the divorce court welfare agency in Birmingham who used systemic practice. Meeting older clients in their place of residence or at some other mutually convenient venue away from base leads to the need to improvise on methods. Taking a colleague and using live supervision in the room (Kingston & Smith, 1983; Smith & Kingston, 1980) is one option. Taking recording devices for later direct supervision, or using a long-distance team (Gorrell-Barnes, 1984) offers another way to invite multiple perspectives on clients’ situations. Linked with team working or lone working is the question of how to include reflecting processes in work with older clients. It is important to co-determine with clients reflecting methods with which they can engage. Interpreting the use of reflecting teams (Andersen, 1990) solely as a method can be constraining for therapists, and potentially be seen as an imposition for clients (contrary to its intentions of introducing more collaborative working). Shifting back into approach to rethink this as ‘reflecting processes’ opens space for using alternative methods that suit particular clients (Roper-Hall & Everill, 2005). Some older clients, perhaps because of sensory limitations, find listening to a reflecting team too difficult. In these circumstances, we use ‘traditional’ time out behind the screen, returning with an interventive statement from the team as a reflecting process. It is clear to us that clients can also value this ‘time out’ to cogitate and discuss the ideas that have come up in our meeting. Pottle (1984) describes how the convened network, including the older clients, generated their own solutions during ‘time-out’.

Defining the System Having considered the configuration of therapy, another major consideration when working with older people is how to define the system for change. Convening ‘the household’ in ways appropriate with younger client groups may yield a system of one if the older person lives alone. This in itself does nothing to attempt to define the significant relational system. On the basis of referral information, some early hypothesising about who may be in the ‘problemdetermined system’ (Anderson, Goolishian & Winderman, 1986) can help to guide the convening process. This can be prompted through questions about how the problem might have been socially constructed: For whom is this a problem? Who is asking for help? How have the concerns been constructed in language? Equally, some hypothesizing about a possible ‘solution-determining system’ could be advantageous. Questions about where the resources for change might be in the system and therefore with whom could those be constructed and accessed are useful pointers for whom to invite. The hypotheses can be elaborated in dialogue with the referrer: who do they think is connected to the problem? Or to the solution? Equally it can be useful to open the arena with the older client themselves: Are there family members or others they see as concerned who they would like to have at a meeting?

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In this way, I have welcomed many different people into meetings with older clients who I would not have known to invite. This has included grandchildren with their partners; neighbours; so-called ‘nieces’ who though not biologically connected are strongly socially connected. Exploring with those present how the communication was made about the meeting, how the decision was made to invite someone to come, and how they chose to come helps to define the system and the connections of those in it. It also opens the conversation to include in the picture those who have not come, along with the communications and decisions in relation to their absence. I have found this kind of beginning helps to establish a systemic and relational context for the therapeutic conversation. Leaving the decision about who to invite solely to others can have other unexpected consequences as assumptions may be made about excluding individuals, for example, diagnosed with dementia, anticipating that their presence would either contribute little or, at the other extreme, be disruptive. This important issue in convening about whether to include a person showing cognitive impairment in a family meeting was first raised by Jeffery (1987). It has subsequently been considered in a case example by Roper-Hall (1992), in a review by Benbow et al. (1993) of their family clinic in which half of the families they had seen had a family member with a diagnosis of Alzheimer’s or multi-infarct dementia, and by Marriott (2000). In systemic terms, when the person showing cognitive impairment is the focus of the problem determined system, the implication would be to include them, even if the expectation is that they cannot engage in a solution determining system. Both Marriott (2000) and Roper-Hall (1992) report surprising consequences of inclusion, when the ability to engage was greater and more pertinent than could have been anticipated by people involved on a day-to-day basis. I have found techniques that I associate with validation therapy (see Chapter 31, this volume) to fit well with systemic approaches. These are based on the general principle of validation: the acceptance of the reality and personal truth of another’s experience, developed by Feil (1993). These techniques include responding to the emotional content and analogical communication when the verbal, digital content is unclear; inviting the person into the social arena of turn-taking in the conversation, responding to their presence in the system using the guideline of neutrality; shifting into an appropriate gear of pacing and sentence structure in interactive speech acts. The responses this can engender can have an eye-opening impact on the ‘audience in the room’ and subsequently influence future interactions between them and the person with dementia. Not having the person with cognitive impairment present enables a different kind of conversation to take place. Defining the system as the care-giving system has prompted other workers to focus on this aspect, not necessarily including the person being cared for (for example, Mitrani & Czaja, 2000). This enables not only a focus on coordinating aspects of care, managing behaviour that might be experienced as challenging and reorganizing the care system in response to changes, but also to address the emotional impact of caregiving including fears for the future, and addressing conflicting family stage tasks (Walsh, 1998). The decision to include or not include a person with cognitive impairment depends on various factors: the hypotheses in relation to the problem-determined system and the solution-determining system and therefore the purpose and focus of the meeting; the willingness and practical possibilities of engagement along with the clinical ethics of participation; and the competence and confidence of the therapist to manage such a meeting.

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Other Considerations in Convening Providing information in advance of a meeting can begin the engagement process and allay anxieties about the nature of the service being offered. This may be particularly relevant to older people as a cohort for whom psychological mindedness has not been so much a part of their upbringing as for younger generations. The way in which information is conveyed is also an important consideration for all concerned. Inviting people to a ‘family meeting’ has different connotations from inviting people to ‘family therapy’. Providing a rationale for the inclusion of professionals in a meeting is likely to require pre-meeting discussions/dialogue. When a meeting is convened to address a different level of system than clients themselves, it is helpful to identify the reason for the meeting as being, perhaps, a precursor to any work with the clients (which may then prove unnecessary!). Geographical spread of a significant relational system might seem to be an obstacle in gathering together widespread members of a family. However, depending on how the purpose of the meeting is construed, distance is not necessarily a barrier. It can be useful to invite people at least for one meeting to gain their perspective, which is better than assuming that someone would not come from, say, Brighton to Birmingham (which has happened!). Decisions about when and where to meet can be influenced by mobility issues and the practical consequences of these and also by political issues when an interagency network is being convened. Shift patterns may need to be accommodated, and when convening a meeting of ward staff, aiming for coinciding with handover time can reap useful rewards in terms of widening the system. It is worth bearing in mind that the rationale and processes and the decisions about who to invite and where to invite people to meet is a message to the convened system. People coming to a meeting will also be hypothesizing about the situation based on their knowledge and understanding of it.

Technique This level in practice refers to the observable acts in which a systemic practitioner engages. Some techniques have been mentioned above as implied by approach or method. Generally systemic techniques are well referenced in the systemic literature and are just as applicable in systemic intervention with older people (see, for example: Boscolo & Bertrando, 1996; Byng-Hall, 1995; Carter & McGoldrick, 1998; Dallos & Draper, 2000; Hoffman, 1993; Vetere & Dallos, 2003). Accordingly, this section focuses on two main areas that have useful variants or require modification for work with older people.

Mapping Genograms are a map of multigenerational family relationships, going beyond a family diagram by plotting process as well as familial connections between people. In this way complex family systems relationships can be graphically represented in ways that enable a person viewing the genogram to construct their own narrative about the family, and

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not depend on another ‘telling them the story’. This can enable fresh connections to be made and new patterns across time, coincidences and anniversaries to emerge that may not have been seen even by the person providing the information for the map. In this way it provides a useful tool for both therapists and clients to extend thinking about a family situation. On one page they can hold a large amount of information. McGoldrick, Gersen and Schellenberger (1999) outline in an instructive text their principles for constructing, exploring and interpreting family systems, as a way of organising therapy. However, using the genogram as a tool with older people can have negative influences by highlighting their position for example as the oldest survivor, or as a childless couple. Other relationship maps that can be helpful in work with older people in their care systems are sociograms, to map the relationships between for example peers and staff in a residential care setting; and ecomaps (borrowed from Hartman, 1979) to represent the interrelationships between different agencies, or units of care for older people. Relationship mapping of this kind has led me to a new form, which I have called an ideogram (Roper-Hall, 1998). An ideogram graphically represents people, ideas, events, diagnoses and indeed any entity constructed in language that has significance in the therapeutic conversation. This conceptual map shows the nature of connections between these entities, which interrelate with recursive influence between people and the problem such that a systemic formulation can emerge. It relates theoretically to the idea of externalising (White, 1988/9) and promotes the kind of language that constructs people as separate from but connected to the problems they describe. This externalizing language constructs greater personal agency in overcoming the problem, and enables coordination of effort by family members, or others in the system in tackling the influence of the problem in their lives. In this way I have used it in my work with families where stroke or dementia of some kind has been diagnosed, which rallies people cooperatively and avoids splitting the system through notions of burden and blame. It is usually helpful if the therapist(s) draw several ideograms for each therapy to represent different constructions over time or from different perspectives.

Systemic interviewing Systemic interviewing uses circular and reflexive questions to look for pattern explanation and new direction. The wide range of reflexive questions categorized by Tomm (1987b) can be quite complex or unexpected in structure. This can present particular challenges to therapists working with clients with linguistic cognitive impairment, for example associated with dementia or stroke. It becomes all the more important to attend to the language of clients, including the words used, sentence structure and pacing, and avoid the use of metaphor which can be helpful in other therapeutic circumstances. For people with aphasia, it can be helpful to ask: ‘who will speak for you?’ whilst still paying attention to the communication of agreement/dissent as the conversation continues to try to include people who cannot speak for themselves. It is also interesting from a systemic perspective to see who is chosen, as it may not be the person you anticipated. This is important both in therapeutic conversation and in offering reflections. The language used needs to be sufficiently different to make a difference, perturbing the system just

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enough for change in a positive direction to occur, without introducing unwanted confusion. Matching clients’ preferences in language of ‘feeling’, ‘doing’ or ‘thinking’ is always useful in structural coupling, as is labelling/prefacing questions and comments with the name of the person to whom they are addressed. Shifting the conversation from time to time into ‘relational reflexivity’ (Burnham, 2005) can be helpful to keep on track in such circumstances, by asking: ‘how is this going for you?’ ‘What do you think of the questions I am asking?’ ‘Are there things that you were expecting me to ask about that I haven’t yet?’ This kind of questioning about questioning can assist in co-constructing the conversation while bearing in mind that if questions are too easy to answer they may not nudge the system sufficiently towards positive change.

CONCLUSIONS The field of systemic practice and family therapy with older people continues to develop, albeit at a slow pace. In relation to publishing, from a meagre start in the late 1970s and early 1980s, demonstrated in a review of articles in US journals (Flori, 1989), by the 1990s the quantity of publications with a focus on systemic family therapy with older people had grown (see Richardson et al., 1994). However, Van Amburg, Barber and Zimmerman (1996), repeating and extending Flori’s study using content analysis, still only identified under 4% of publications in the main US family therapy journals with a focus on later life issues. Curtis and Dixon (2005) have more recently taken stock of the published field again, and whilst the level of engagement in publishing about systemic practice with older people is increasing, along with the number of practitioners getting involved, the amount published is still low compared to other areas of systemic practice. Some of the notable books since Herr and Weakland (1979) that have been devoted to systemic practice and family therapy with older people include Hughston, Christophersen and Bonjean (1989), Iveson (1990), Neidhardt and Allen (1993) and Marriott (2000). The evidence base for systemic practice implicitly includes work in relation to older people by covering a range of situations as relevant to later life as to younger people, (see Asen, 2002 and Carr, 2000a, 2000b). However the explicit evidence base for such work would benefit from being developed. Among the questions that could be addressed are: ‘can the efficacy of systemic approaches be demonstrated through research to be equally useful with older people as the focus of concern, for example along the lines of Leff et al. (2000) comparing those results with an older cohort?’ What are the variables that indicate whether to include a person with cognitive impairment in a meeting? What is the comparative efficacy of providing ‘formal’ systemic therapy for older people in family clinics compared to providing systemic therapy working solo away from base, meeting clients in their place of residence? Finally, in relation to developing practice, using the distinctions of approach-methodtechnique provides a framework for practitioners to take ideas from the literature, adapting them as applicable to their practice by developing conceptual tools, drawing on systemic techniques and developing working patterns fitting to their agency context.

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REFERENCES Andersen, T. (1990) The Reflecting Team. Dialogues and Dialogues about the Dialogues. Borgman, Broadstairs. Anderson, H., Goolishian, H. & Winderman, L. (1986) Problem determined systems: towards transformation in family therapy. Journal of Strategic and Systemic Therapies, 5(4), 14–19. Asen, E. (2002) Outcome research in family therapy. Advances in Psychiatric Treatment, 8, 230–8. Atwood, J., and Ruiz, J. (1993) Social constructionist therapy with the elderly. Journal of Psychotherapy, 4(1), 1–32. Baikie, E. (2002) The impact of dementia on marital relationships. Sexual and Relationship Therapy, 17, 289–99. Bateson, G. (1972) Steps to an Ecology of Mind. Ballantine, New York. Bateson, G. (1979) Mind and Nature: A Necessary Unity. Ballantine, New York. Bateson, G., Jackson, D., Haley, J. & Weakland, J. (1956) Toward a theory of schizophrenia. Behavioral Science, 1, 251–64. Benbow, S., Egan, D., Marriott, A. et al. (1990) Using the family life cycle with later life families. Journal of Family Therapy, 12, 321–40. Benbow, S., Marriott, A., Morley, M. & Walsh, S. (1993) Family therapy and dementia: review and clinical experience. International Journal of Geriatric Psychiatry, 8, 717–25. Berger, P. & Luckmann, T. (1966) The Social Construction of Reality: A Treatise in the Sociology of Knowledge. Anchor, Garden City, NY. Boscolo, L. & Bertrando, P. (1996) Systemic Therapy with Individuals. Karnac Books, London. Boscolo, L., Cecchin, G., Hoffman L. & Penn, P. (1987) Milan Systemic Family Therapy: Conversations in Theory and Practice. Basic Books, New York. Bowen, M. (1978) Family Therapy in Clinical Practice. Ronson, New York. Burnham, J. (1986) Family Therapy: First Steps Towards a Systemic Approach. Routledge, London. Burnham, J. (1992) Approach-method-technique: making distinctions and creating connections. Human Systems, 3, 3–26. Burnham, J. (2005) Relational Reflexivity a tool for socially constructing interviews, in The Space Between: Experience, Context and Process in the Therapeutic Relationship (eds C. Flaskas, B. Mason & A. Perlesz). Karnac Books, London. Byng-Hall, J. (1995) Rewriting Family Scripts. Improvisation and System Change. Guilford, New York. Carpenter, J. (1993) Working together, in Using Family Therapy in the 90s. (eds J. Carpenter, and A. Treacher). Blackwell, Oxford. Carr, A. (2000a) Evidence-based practice in family therapy and systemic consultation I. Journal of Family Therapy, 22, 29–60. Carr, A. (2000b) Evidence-based practice in family therapy and systemic consultation II. Journal of Family Therapy, 22, 273–295 Carter, B. & McGoldrick, M. (eds) (1998) The Expanded Family Life Cycle: Individual, Family and Social Perspectives, 3rd edn. Allyn & Bacon, Boston. Cecchin, G. (1987) Hypothesizing circularity neutrality revisited: an invitation to curiosity. Family Process, 26, 405–13. Cecchin, G., Lane, G. & Ray, W. (1992) Irreverence. A Strategy for Therapists’ Survival. Karnac Books, London. Curtis, E. & Dixon, M. (2005) Family therapy and systemic practice with older people: where are we now? Journal of Family Therapy, 27, 43–64. Dallos, R. & Draper, R. (2000) An Introduction to Family Therapy: Systemic Theory and Practice. Open University Press, Maidenhead. Dixon, M. (2002) Involving Older Adults and their Carers in Care Planning Meetings: A Context for Collaboration? Unpublished M.Sc. Dissertation, Faculty of Social Sciences, University of Bristol. Epston, D. (1989) Collected Papers. Dulwich Center Publications, Adelaide, Australia. Feil, N. (1993) The Validation Breakthrough: Simple Techniques for Communicating with People with ‘Alzheimer’s Type Dementia’. Health Professions Press, Baltimore.

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Flori, D. (1989) The prevalence of later life family concerns in the marriage and family therapy journal literature (1976–1985): a content analysis. Journal of Marital and Family Therapy, 15, 289– 97. Gilleard, C., (1996) Family Therapy with Older Clients, in Handbook of the Clinical Psychology of Ageing (ed. R.T. Woods). John Wiley & Sons, Chichester. Gleick, J. (1987) Chaos, Making a New Science. Abacus, London. Gorrell-Barnes, G. (1984) Working with Families. London: Macmillan. Hartman, A. (1979) Finding Families: An Ecological Approach to Family Assessment in Adoption. Sage: Human Services Guide Vol 1. Sage Publications, London. Herr, J. & Weakland, J. (1979) Counseling Elders and their Families: Practical Techniques for Applied Gerontology. Springer, New York. Hoffman, L. (1981) Foundations of Family Therapy. A Conceptual Framework for System Change. Basis Books Inc., New York. Hoffman, L. (1993) Exchanging Voices: A Collaborative Approach to Family Therapy. Karnac Books, London. Hughston, G., Christopherson, V. & Bonjean, M. (Eds.) (1989) Aging and Family Therapy: Practitioner Perspectives on Golden Pond. Haworth, New York. Imber Black, E. (1988) Families and Larger Systems: A Family Therapist’s Guide through the Labyrinth. Guilford Press, New York. Iveson, C. (1990) Whose Life? Community Care of Older People and their Families. BT Press, London. Jeffery, D. (1986) The Systems Approach to Changing Practice in Residential Care, in Psychological Therapies for the Elderly (eds I. Hanley & M. Gilhooly). Croom Helm, London. Jeffery, D. (1987) Should you involve an older person about whom there is an issue of cognitive competence in family meetings? PSIGE Newsletter, 24, 8–11. Jones, E. (1993) Family Systems Therapy: Developments in the Milan-Systemic Therapies. John Wiley & Sons, Chichester. Kingston, P. & Smith, D. (1983) Preparation for live consultation and live supervision when working without a oneway screen. Journal of Family Therapy, 5, 219–233. Korzybski, A. (1951) The Role of Language in the Perceptual Processes. His 1950 article in: Perception: An Approach to Personality (eds R. Blake & G. Ramsey). The Ronald Press Company, New York. Kropf, N. & Tandy, C. (1998) Narrative therapy with older clients: the use of a ‘meaning-making’ approach. Clinical Gerontologist, 18(4), 3–15. Leff, J.,Vearnals, S., Brewin, C. et al. (2000) The London Depression Intervention Trial : Randomised controlled trial of antidepressants v. couple therapy in the treatment and maintenance of people with depression living with a partner: clinical outcome and costs. British Journal of Psychiatry, 177, 95–100. Lewin, R. (1992) Complexity, Life at the Edge of Chaos. Macmillan, New York. Lewis, R. (1998) The impact of the marital relationship on the experience of caring for an elderly spouse with dementia. Ageing and Society, 18, 209–31. Lieberman, S. (1979) Transgenerational Family Therapy. Croom Helm, London. Marriott, A. (2000) Family Therapy with Older Adults and their Families. Winslow Press Ltd., Oxford. Marriott, A. & Pickles, A. (1987) A family clinic for the elderly in Central Manchester. PSIGE Newsletter, 24, 12–14. Maturana, H. & Varela, F. (1980) Autopoiesis and Cognition. Reidel, Dordrecht. McGoldrick, M., Gersen, R. & Schellenberger, S. (1999) Genograms: Assessment and Intervention, 2nd edn. Norton, New York. McNamee, S. (2004) Promiscuity in the practice of family therapy. Journal of Family Therapy, 26, 224–44 McNamee, S. & Gergen, K. (Eds) (1992) Therapy as Social Construction. Sage Publications, London. Mitrani, V. & Czaja, S. (2000) Family-based therapy for dementia caregivers: clinical observations. Ageing and Mental Health, 4, 200–9. Neidhardt, E. & Allen, J. (1993) Family Therapy with the Elderly. Sage Publications, London. Palazzoli, M.S., Boscolo, L., Cecchin, G. & Prata, G. (1980) Hypothesizing circularity neutrality: three guidelines for the conductor of the session. Family Process, 19, 3–12.

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Pearce, W.B. & Cronen, V. (1980) Communication, Action and Meaning: the Creation of Social Realities. Praeger, New York. Pottle, S. (1984) Developing a NetworkOrientated Service for Elderly People and their Carers, in Using Family Therapy (eds A. Treacher and J. Carpenter). Blackwell, Oxford. Richardson, C., Gilleard, C., Lieberman, S. & Peeler, R. (1994) Working with older adults and their families: a review. Journal of Family Therapy, 16, 225–40. Roper-Hall, A. (1987) Old problems – new ideas. PSIGE Newsletter, 24, 4–7. Roper-Hall, A. (1992) Better late than never. family therapy with older adults. Clinical Psychology Forum, 48, 14–18. Roper-Hall, A. (1993) Developing family therapy services with older adults, in Using Family Therapy in the 90s. (eds J. Carpenter & A. Treacher). Blackwell, Oxford. Roper-Hall, A. (1998) Working systemically with older people and their families who have ‘come to grief’, in Working with the Dying and Bereaved: Systemic Approaches to Therapeutic Work (eds P. Sutcliffe, G. Tufnell & U. Cornish). Macmillan, Basingstoke. Roper-Hall, A. & Everill, J. (2005) Multiple perspectives: families team work with older people in south Birmingham. Context, 77, 49–50. Smith, D. & Kingston, P. (1980) Live supervision without a one way screen. Journal of Family Therapy, 2, 379–87. Speed, B., Seligman, P., Kingston, P. & Cade, B. (1982) A team approach to therapy. Journal of Family Therapy, 4, 271–84. Thom, R. (1989) Structural Stability and Morphogenesis: An Outline of a General Theory of Models. Addison-Wesley, Reading, MA. Tomm, K. (1987a) Interventive interviewing: Part I. strategizing as a fourth guideline for the therapist. Family Process, 26, 2–13. Tomm, K. (1987b) Interventive interviewing: Part II: Reflexive questioning as a means to enable self healing. Family Process, 26, 167–83. Tomm, K. (1988) Interventive interviewing: Part III. Intending to ask lineal, circular, strategic, or reflexive questions? Family Process, 27, 1–15. Van Amburg, S., Barber, C. & Zimmerman, T. (1996) Aging and family therapy: prevalence of aging issues and later family life concerns in marital and family therapy literature (1986-1993). Journal of Marital and Family Therapy, 22(2), 195–203. Vetere, A. & Dallos, R. (2003) Working systemically with Families: Formulation, Intervention and Evaluation. Karnac Books, London. Von Bertalanffy, L. (1968) General System Theory: Foundations, Development, Applications. George Braziller, New York. Von Glasersfeld, E. (1987) The Construction of Knowledge: Contributions to Conceptual Semantics. Intersystems Publications, Seaside CA. Walsh, F. (1998) Families in Later Life: Challenges and Opportunities, in The Expanded Family Life Cycle: Individual, Family and Social Perspectives, 3rd edn (eds B. Carter & M. McGoldrick). Allyn & Bacon, Boston. Watzlawick, P., Beavin, J. & Jackson, D. (1967) Pragmatics of Human Communication: A study of Interactional Patterns, Pathologies, and Paradoxes. W.W. Norton, New York. Watzlawick, P., Weakland, J. & Fisch, R. (1974) Change: Principles of Problem Formation and Problem Resolution. W.W. Norton, New York. White, M. (1988/9) The externalizing of the problem and the reauthoring of lives and relationships. Dulwich Centre Newsletter, Summer, Adelaide, Australia. White, M., (1989) Selected Papers. Dulwich Centre Publications, Adelaide, Australia. White, M. & Epston, D. (1991) Narrative Means to Therapeutic Ends. Norton Publications, New York. Wiener, N. (1950) The Human use of Human Beings. Cybernetics and Society. Boston: Houghton Mifflin.

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Neuropsychological rehabilitation in later life: special considerations, contributions and future directions Margaret Crossley University of Saskatchewan, Saskatchewan, Canada

Maximizing recovery of function following traumatic brain injury, stroke, or other common health-related events and conditions that threaten quality of life and daily functioning in older people is the purview of late-life rehabilitation and the focus of this chapter. The general principles of rehabilitation will be summarized briefly, and followed by a discussion of some of the special considerations associated with neuropsychological rehabilitation in older adults. The published literature relating to late-life rehabilitation is still relatively sparse, and tends to focus on traumatic head injury and stroke (see also Chapter 13, this volume, on stroke). Other diagnoses that are relevant to the principles of late-life rehabilitation include Parkinson’s Disease and Parkinsonism (see also Chapter 12, this volume) orthopaedic conditions (including hip fracture), and a range of potentially chronic psychiatric illnesses, such as schizophrenia, major depression and anxiety disorders. Although rehabilitation following a diagnosis of dementia is an emerging and exciting field that is worthy of special attention, this topic is covered well in Chapter 31, this volume and therefore will not be reviewed here. Similarly, age-associated cognitive decline, although not an illness per se, can result in subjective distress and interfere with quality of life, particularly in frail older people and in the oldest-old demographic, and is the recent focus for innovative approaches to cognitive rehabilitation (see Craik et al., 2007; Levine et al., 2007; Stuss et al., 2007; Winocur, Palmer et al., 2007). Principles of psychological rehabilitation and interventions for older people are best understood and evaluated while taking into consideration the biological and functional changes that are assumed to underlie agerelated cognitive change. The final sections of this chapter will briefly outline some of the empirically supported interventions available to clinical psychologists with an interest in Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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late-life rehabilitation, and will conclude with a discussion of some future directions for rehabilitation programming with older adults.

GENERAL PRINCIPLES OF REHABILITATION Rehabilitation is commonly described as a collaborative endeavour between a disabled person and a multidisciplinary team of healthcare providers that aims to optimize the disabled person’s level of physical, psychological, and social-cultural functioning (Robertson & Murre, 1999; Wilson, 1999). The objectives of rehabilitation may include, but are not limited to, the full restoration of function, the development of new skills or more efficient use of residual skills to compensate for lost abilities, appropriate use of tools and aids designed to complement remaining functional skills, the provision of environmental alterations that allow for enhanced performance or a higher degree of independent functioning, and the initiation of supportive interventions to facilitate psychological resilience in the face of loss and change. Rehabilitation begins at various stages following the onset of an illness such as Parkinson’s disease, or health-related events such as traumatic brain injury or ischaemic stroke, and it is assumed to either enhance or facilitate the process of natural recovery, to provide compensation for lost abilities, or to limit the functional effects associated with progressive decline. Initiation of a programme of rehabilitation depends on the availability of resources and on the mutual agreement by members of the interprofessional team, including the disabled person and his/her family members (broadly defined), that one or more of the objectives of rehabilitation can be met. Clinical psychological and neuropsychological contributions to rehabilitation include detailed, standardized assessment of cognitive strengths and limitations, analysis of emotional processes, personality and behavioural characteristics and estimations of premorbid abilities and achieved level of functioning. Psychological and neuropsychological assessment integrates with the above-mentioned behavioural measures, a careful consideration of day-to-day problems and ‘real-life’ challenges and successes from the perspective of the disabled individual and his or her family members. Comprehensive assessments conducted by team members from various disciplines, including the psychologist, form the basis of all interventions initiated as part of a rehabilitation programme. Interventions will vary depending on the composition and resources of the healthcare team, the course of the disability that is the focus of the rehabilitation (for example, recovery following traumatic injury versus the progressive course of degenerative neurological disease), and the unique characteristics of the patient participating in the rehabilitation programme. Although beyond the scope of this chapter, neuropsychological rehabilitation is based on theories of recovery of function that assume the potential engagement of mechanisms of brain plasticity or reorganization that use Hebbian neural network models (Robertson & Murre, 1999). Rehabilitation efforts can be characterized using principles of guided recovery that include nonspecific stimulation (for example, exposure to environmental sounds and social interactions), targeted bottom-up or top-down stimulation (for example, repetitive hand exercises and mental rehearsal of planned movements, respectively) and manipulation of inhibitory processes (such as contralateral sensory stimulation or unilateral movement restriction following stroke) and arousal processes (for example, use of D-amphetamine following brain injury). See Robertson and Murre (1999) for a full discussion of the principles of guided recovery.

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Ultimately, the effectiveness of rehabilitation for a particular patient is determined by its generalizability. This refers to the degree to which rehabilitation interventions, and subsequent new learning or relearning, results in enduring recovery of function in the patient’s real-life situations and environments. Predictors of recovery of function and response to rehabilitation include severity of injury or lesion size (for example, very small lesions are typically resolved through spontaneous self-repair processes whereas very large lesions require significant compensation and functional reorganization), involvement of executive brain functions, self-awareness or insight, and premorbid ability or reserve (Robertson & Murre, 1999; Satz, 1993). Age at the time of injury and the impact of the ageing process on long-term recovery are important determinants of outcome that provide a primary focus for the remainder of this chapter.

SPECIAL CONSIDERATIONS FOR REHABILITATION WITH OLDER ADULTS Normal Age-associated Brain and Cognitive Changes Rehabilitation of older people is usefully informed by an understanding of how the ageing process is related to changes in both brain structure and functioning (see also Chapter 3, this volume, for a discussion of cognitive changes in ageing). Reviews of structural and functional changes in the ageing brain (for example, Albert & Killiany, 2001; Jernigan et al., 200; Raz, 2000; Scheibel, 1996) indicate that age-related changes occur to cerebral cytoarchitecture, vasculature, neurochemistry, and cerebral haemodynamics and are assumed to underlie the cognitive changes observed in normal ageing (Albert & Killiany, 2001). For example, slowing of information processing is a fundamental aspect of cognitive ageing (Salthouse, 1991) and is reportedly associated with demyelination of the brain’s white matter and an increase in the burden of vascular lesions (Raz, 2000). In normal ageing there is a moderate and gradual loss of grey and white matter throughout the brain and, in particular, of white matter in certain regions of the neocortex (frontal, temporal, and parietal regions – Resnick et al., 2000). As a result, the brain gradually shrinks in weight and volume (about 2% per decade after about age 30), and brain matter is replaced by increasing levels of cerebrospinal fluid. Consequently, there is an expansion of the cerebral ventricles and a generalized enlargement of cerebral sulci, so that the ventricles appear larger on neuroimageing or during autopsy in older people and the convolutions on the brain surface appear more pronounced. Although increasing age sometimes has been associated with generalized brain atrophy, it is now accepted that neurobiological changes are selective and sometimes compensatory (Albert & Killiany, 2001). For example, the hippocampal formation, the frontal, temporal, and parietal convexities and the parasagittal regions are particularly age sensitive, in contrast to the occipital lobe, which is relatively spared (Raz, 2000). In addition, postmortem research (see Raz, 2000 for a full review) suggests that specific cellular layers of specific cortical regions (for example, lamina V of the prefrontal cortex) may be particularly age sensitive when compared to other cellular layers that appear resilient to normal age effects. These selective age-related brain changes are presumed to underlie the accepted negative correlations between chronological age and cognitive abilities such as reasoning, spatial visualization, episodic memory and speed of information processing, but

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also the relative preservation of vocabulary and other language-based functions (Kaszniak & Newman, 2000). The forebrain, and especially the prefrontal cortex, is especially vulnerable to normal age effects and is a likely explanation for age-related changes in working memory and in a range of other executive functions (Albert & Killiany, 2001; Kaszniak & Newman, 2000). In fact, frontal system decline that interferes with working memory and executive functions is a likely contributor to age-related differences in performance on a range of speeded, effortful, and complex tasks (Stuss et al., 1996; Stuss & Levine, 2002). A contrasting view is expressed by Timothy Salthouse, who argues that cognitive performance is largely determined by a small set of well-established cognitive abilities (perceptual speed, spatial visualization skills, reasoning ability, and so forth) which are differentially affected by age (Salthouse, 2005). In contrast to the prefrontal regions, there are relatively modest age-related changes to the gross structure or to the cellular makeup of most midbrain and hindbrain structures (Raz, 2000). One important exception is the cerebellum at the base of the brain, which is critical for coordinated motor performance. Age-related loss of cerebellar tissue and sulcal enlargement, especially in the vermis, is evident (Jernigan et al., 2001) but may be confounded by alcohol consumption, because regions of the cerebellum (and particularly the Purkinje cells), are highly sensitive to even social levels of alcohol use (Raz, 2000). Age-associated changes to the structure and function of central nervous system neurones have been well documented but the previously presumed decline with age in the actual number of neurones is now under some debate (Raz, 2000). Nevertheless, even in normal older people, there is an increased accumulation of neurofibrillary tangles and cellular waste products (for example, lipofuscin, a yellowish-brown lipid called the ‘wear and tear pigment’, is found in the cells of the cerebellum and cerebral cortex). As summarized by Raz (2000), neuritic plaques are relatively infrequent in normal ageing and restricted to the superficial cortical layer, chemical messengers or neurotransmitters that carry electrochemical impulses from one brain cell to another are reduced and there is a corresponding decline in synaptic density. An important conclusion about healthy ageing is that as communication processes among neurones are altered with age, there appears to be a compensatory growth of dendritic branches in the remaining neurones. According to Raz, the reduction in white matter in the ageing brain is due largely to loss and change in axonal myelin, although the corpus callosum appears to be spared. Finally, the cerebrovasculature is affected gradually by normal ageing, resulting in a moderate reduction in regional cerebral blood flow (CBF) and metabolic rate of oxygen utilization (Raz, 2000). Functional neuroimageing of cognitive ageing effects is a promising and still-emerging field of investigation (Albert & Killiany, 2001). The conclusion reached by Raz (2000), based on his comprehensive review, is that age-related changes in cerebral cytoarchitecture, vasculature, neurochemistry and cerebral hemodynamics places constraints on the application of functional neuroimageing techniques to the investigation of ageing and cognition. Although these techniques have provided interesting insights into the topic, neuroimageing investigations have been only modestly successful in explaining age-related variability in cognitive performance. In light of these limitations, Raz made a very ‘cautious generalization’ by concluding that the ageing information-processing systems cope with decline in task-specific resources by broadening their recruitment base. In other words, normal older people naturally compensate for brain-based changes by using more brain regions and resources during information-processing tasks. In summary, although calendar age is

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clearly a significant and important predictor of age-associated variability in cognitive performance, nevertheless, individual differences are noteworthy and some older people appear to be resilient to normal age-related brain-based changes. It is reasonable to propose that the degree of age-related change already present in the brain of an older person may serve to determine his or her vulnerability to the effects of the injury or disease. For example, the effects of traumatic brain injury are exacerbated in those older people with pre-existing systemic disease (Vollmer et al., 1991). In fact, older people who survive severe brain injury are more likely than their same-age peers to be premorbidly healthy or to have unusual brain reserve despite the changes inherent in normal ageing (Satz, 1993). The case study of KE, an 80-year-old female who survived severe traumatic brain injury, describes the potential of one such older person and demonstrates the presumed associations among behavioural, metabolic, and electrophysiological measures, both early on and at a later stage in the recovery process (Crossley et al., 2005).

Age Bias Normal age-related neurobiological and neuropsychological changes should be taken into consideration when designing rehabilitation programmes for older people, especially for individuals in advanced old age. Just as modifications to materials and presentation may need to be made to accommodate age-related changes in hearing and visual acuity, normal age reductions in episodic and working memory, speed of information processing, and in spatial visualization abilities will need to be both acknowledged when assessing the effects of brain injury and disease, and accommodated to ensure maximum benefit from rehabilitation programmes. Nevertheless, the effects of normal ageing on cognitive functions should not be exaggerated or presumed to limit benefits that can be gained from rehabilitation efforts. In fact, in light of the high prevalence rates and insidious onset of dementia in older people, there is some risk that research studies describing normal age-related brain and functional changes have exaggerated normal age effects through the inclusion of individuals in preclinical stages of dementia (Sliwinski et al., 1996). Consequently, careful consideration of premorbid functioning is critically important in determining effects of injury or illness, and on subsequently planning rehabilitation programmes. This is a particularly important consideration in light of the tendency for older people to be denied equal access to limited treatment resources, including emergency services (Bazarian et al., 2005) and rehabilitation, solely because of their chronological age (Becker, 1994).

TRAUMATIC BRAIN INJURY Epidemiology and Pathophysiology of Traumatic Brain Injury (TBI) in Older Adults According to a recent publication by the World Health Organisation (WHO) on public health challenges associated with neurological disorders (World Health Organisation, 2007), traumatic brain injury is the leading cause of death and disability among the young, largely associated with road traffic crashes, and the cause of half of all traumatic deaths. The

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estimated incidence rate of TBI is highly variable across countries but ranges from 150 to 300 per 100,000 persons, with the highest incidence among persons 15–24 years of age and 75 years and older. Traumatic brain injury-related hospitalization rates are twice as high for adults over 75 years (264/100,000) when compared to any other age group, and almost 75% of these hospitalizations in older adults are associated with unintentional falls (Langlois, Rutland-Brown & Thomas, 2004). Consequently, severe TBI is a common diagnosis among older adults who are treated in rehabilitation programmes (Stringer, 2003). Severe brain injury is currently defined by duration of coma of six hours or longer, a score of 8 or less on the Glasgow Coma Scale (Teasdale, 1974), or the duration of post traumatic amnesia (PTA) of 24 hours or longer. The Glasgow Coma Scale (GCS) was developed to evaluate the depth of coma severity and is typically administered by emergency personnel as soon as possible after the traumatic event or injury. Scores on the GCS range from 3 to 15 and are based on behavioural ratings of ‘best motor response’, eye opening to command and verbal responsiveness. Scores between 3 and 8 indicate severe brain injury, loss of consciousness, or coma. Coma is defined by the American Congress of Rehab Medicine (1995) as an inability to obey commands, to speak, or to open the eyes. Self-awareness and sleep-wake cycles are absent and there is no purposeful movement or any experience of suffering. Respiratory function is depressed or variable and behaviours are restricted to reflex activity. Post-traumatic amnesia (PTA) refers to a post-injury memory disturbance that is characterized by an inability to lay down new memories, and may be evident for hours, days, weeks, or months after a patient emerges from coma (Iverson, 1998). The duration of coma, GCS score, and PTA are considered the most reliable markers for severity of brain injury (Iverson, 1998). One early and important study describing the relationship between age and outcome following traumatic coma due to nonpenetrating head injury was a large, multisite, prospective study using data from 661 patients over the age of 15 years (Vollmer et al., 1991). Older patients were defined as those over 55 and they comprised 11% of the sample. A primary aim of the study was to identify some of the factors that contribute to the strong positive association between age and morbidity and mortality rates following severe closed head injury. Data collected included patient demographic data, accident characteristics, medical history and neurological examinations on admission and during hospitalization. In addition, clinical and lab data, operative interventions, complications, CT results, and patient outcome approximately 6 months postinjury using the Glasgow Outcome Scale (GOS; Teasdale et al., 1998) were recorded. These data revealed striking differences between young and older patients following brain injury. For example, the mortality rate for the youngest group was approximately 30%, whereas the oldest group had a mortality rate of over 80%. Similarly, although 30% of the youngest group achieved ‘good recovery’, none of the older people were rated with ‘good recovery’. The survival curves differed as well, with the younger age groups levelling off by the end of the first week and the oldest group showing significantly higher levels of ‘late mortality’ (more than 48 hours after injury). As described above, the mechanism of injury differs in old and young patients, with falls and pedestrian accidents the most common cause in older people and motor-vehicle accidents the most common cause in the young (Vollmer et al., 1991; World Health Organisation, 2007). Probably as a result of this, multiple injuries are less common in older adults with closed head injury. Overall injury severity, as measured by the GCS score, does not

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differ according to age, but a greater percentage of older adults have serious non-neurological complications (pulmonary, renal, gastrointestinal, cardiovascular, and so forth). However, medical complications are no more likely to be the cause of death for older compared to younger patients (<25%). For example, in young and older groups described by Vollmer et al. (1991), approximately 70% of all deaths were primarily due to the head injury itself (mass lesions in older people and diffuse injury in younger adults). Not surprisingly, a much higher proportion of older adults than younger adults have pre-existing medical problems prior to their injury. For example, 75% of the older group described by Vollmer et al. had known medical problems prior to their injury compared to only 5% of the youngest group. As expected, medical history did influence outcome for the oldest group. That is, of those with pre-existing conditions, over 85% died or were in a vegetative state at 6 months post injury, whereas for those with no known problems, only 50% were dead or in a vegetative state. Nevertheless, pre-existing systemic disease does not completely account for the age effect on outcome. The age effect on outcome following severe brain injury appears to be independent of a large number of clinical predictors. The neurobiological changes associated with normal ageing are thought to underlie the poorer prognosis associated with increasing age. The normal age-related changes in brain functions, as summarized above, may impair the brain’s ability to recover following insult, regardless of aetiology. For example, the old brain when compared to the young brain may respond differently to changes in intracranial pressure, the generation of cerebral oedema, and mechanical stress. Egeler-Peerdeman (1996) described the cascade of pathophysiological processes set in motion at the time of traumatic insult to the brain. These processes include a range of interrelated effects, including diffuse axonal damage secondary to mechanical forces, vascular changes that result in a breakdown in the blood brain barrier, loss of blood supply to brain regions (ischemia), brain-based swelling or oedema, elevated intracranial pressure (ICP) usually secondary to subarachnoid or subdural haemorrhage, and intracellular neurochemical changes (Egeler-Peerdeman, 1996). The neurobiology and neuropathology associated with traumatic brain injury is assumed to underlie the pattern of associated neuropsychological deficits (Bigler, 2003). According to Vollmer and others, it is the combined effect of normal ageing and severe traumatic injury on brain structures and functions that results in low survival rates among severely injured older people. In fact, recent prospective research with older people following injury identified intracranial pathology as an important predictor of outcome and called for a classification system that takes this into consideration (Goldstein & Levin, 2001). Presumably survivors are more likely than those who do not survive their injury to have good premorbid health and possibly higher levels of premorbid brain functioning. Consequently, when estimating the likely behavioural consequences of brain injury in older people, important considerations are chronological age and the various factors that modify the expected age effects.

Neurobehavioural Consequences of TBI in Older Adults In general, traumatic brain injury in older patients when compared to younger patients with equivalent injury severity, is more likely to result in death, and for those who survive, higher levels of impairment in cognitive and affective functioning, and reduced likelihood of

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returning to pre-injury living arrangements (Goleburn & Golden, 2001; Ushewokunze et al., 2004). Nevertheless, older people who survive severe brain trauma can potentially follow the same gradient of recovery evident in younger patients, although usually at a slower rate, and may benefit equally from rehabilitation (Flanagan, Hibbard & Gordon, 2005; Reeder et al., 1996). Survival of severe injury in older adults is related to pre-injury health status, and outcome may be positively correlated with premorbid intellectual levels (Johnstone, Hexum & Ashkanazi, 1995). These conclusions are supported by a recent study by Wilson, Pettigrew and Teasdale (2000) who investigated the emotional and cognitive consequences of head injury in relation to the Glasgow Outcome Scale (GOS and GOS extended version; Wilson, Pettigrew & Teasdale, 1998). They included 135 patients between the ages of 16 and 69 with severe, moderate, or mild injury and found no association between age and quality of outcome (GOS and GOSE) in these survivors, although they did find a positive association between estimated IQ and outcome. Similarly, Reeder et al. (1996) studied the impact of age on functional outcome following traumatic brain injury in 365 patients (15-86) and found that age had no significant predictive value after controlling for injury severity and aetiology. Level of functioning on admission to the inpatient rehab unit, as measured using the Functional Independence Measure (FIM) (Heinemann et al., 1994) and the Disability Rating Scale (DRS) (Rappaport et al., 1982), independent of other factors, was the strongest predictor of functioning at discharge. Injury severity and educational level were also significant predictors of discharge functioning; contrary to expectations, age did not predict the level of functional improvement achieved during inpatient rehabilitation. Reeder et al. (1996) concluded that individuals who survive traumatic brain injury and enter comprehensive rehabilitation programmes will be equally likely to benefit, regardless of age. Consequently, although it is clear from the research that significantly fewer older people survive severe injury compared to younger patients and that pre-existing medical conditions increase the likelihood of morbidity and death, there is no justification for limiting access to rehabilitation solely on the basis of advanced age. Goldstein and Levin (2001) studied the effects of mild to moderate TBI in older people (>50 years) using cognitive measures of attention, verbal and visual memory, expressive language, executive functioning, and behavioural measures of psychosocial functioning and affect. They observed patterns of impairments in over half of the older people studied that were similar to the patterns observed among younger adults following TBI (e.g., deficits were observed on tests of memory, executive functioning, verbal fluency, and attention). In addition, they reported significant post-injury behavioural alterations that were consistent with psychosocial difficulties commonly reported for younger adults. Prospective follow-up with participants between the ages of 50 to 87 years (Goldstein & Levin, 2001) indicated that mildly injured older people displayed normal cognitive functioning in the early months following injury but continued to report significant levels of anxiety, depression, and somatic preoccupation. Despite having equivalent potential to benefit from rehabilitation, older patients are less likely to return to their previous living arrangements than younger injured patients (Goldstein & Levin, 2001), and appear to be at risk for post-injury complications, such as high levels of depression, anxiety, or somatic preoccupation that can interfere with rehabilitation and have an impact on long-term outcome (Goldstein & Levin, 2001; Jorge & Robinson, 2003). Mood disorders secondary to TBI are common in individuals of all ages (Jorge & Robinson, 2003). Although these disorders can be treated successfully using pharmacological interventions

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in younger patients, these treatments are frequently contraindicated in older people or complicated by the interacting effects of ageing and trauma. Finally, there is accumulating research to support the conclusion that TBI increases the risk for degenerative dementias such as Alzheimer’s disease or frontotemporal dementia (Rasmusson et al., 1995; Roberts et al., 1994; Salib & Hillier, 1997). The association between brain injury and late-life onset of dementia presumably results from the injury-related reduction in the brain’s available reserve and ability to withstand the effects of ageing (Hinkebein et al., 2003; Satz, 1993). Risk of dementia following TBI is especially high in patients who carry genetic risk factors for dementia (Luukinen et al., 1999; Mayeux et al., 1993; Nicoll, Roberts & Graham, 1995).

REHABILITATION FOLLOWING STROKE IN OLDER PEOPLE Cerebral vascular accident (CVA), or stroke, refers to the neuropathological processes (e.g., alterations in motor, sensory, communicative, cognitive and emotional functions) that result from a disruption in normal cerebral blood flow (see also Chapter 13 on stroke). Although the incidence of stroke has fallen dramatically over the past 50 years, due to better control of important risk factors such as hypertension and heart disease, it is still the most common cause of death after heart disease and cancer and the leading cause of adult disability (Lawrence et al., 2001). For example, up to 70% of individuals who suffer a stroke are left with either moderate functional impairment or severe disability (Duncan et al., 2005), and approximately 45% of stroke survivors have cognitive impairment (Lawrence et al., 2001). Over 70% of individuals presenting with stroke are over 65 years; age is considered to be the most important risk factor for stroke and an important factor when predicting outcome or recovery (Kuller, 2000). Consistent with the literature on rehabilitation following TBI in older adults, some have suggested that age bias in stroke rehabilitation can seriously limit access to appropriate care for older people (Becker, 1994). In contrast to this view, Lichtenberg and MacNeill (2000, p. 112) describe stroke as ‘primarily a geriatric issue’ and stroke rehabilitation as an important model for rehabilitation with older people. According to recently developed stroke rehabilitation guidelines (Duncan et al., 2005), rehabilitation should be initiated in the early stages following stroke and will result in better clinical outcomes when assessments are comprehensive and based on tools that have been standardized and validated, and when interventions are evidence-based and coordinated by a multidisciplinary team of health professionals. Timely and interprofessional rehabilitation has been shown to enhance recovery, minimize resulting functional disability, improve quality of life for patients and family members and increase the likelihood of community reintegration (Duncan et al., 2005). Community reintegration is related to the availability of social supports and is a particularly important goal for all rehabilitation efforts with older people, especially in light of their high prevalence of comorbid medical illnesses and poststroke neurological complications (Lichtenberg & MacNeill, 2000). Recent evidence-based reviews conclude that clinical psychologists and neuropsychologists can make significant contributions to the assessment and cognitive rehabilitation of older adults following stroke (Cicerone et al., 2000; Stringer, 2003). Poststroke cognitive effects vary with lesion location and size, but typically include attention and memory deficits, language and speech impairments, visual-spatial impairments, unilateral neglect,

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dyspraxias, executive dysfunction, and problem-solving difficulties. Evidence-based interventions include visuospatial rehabilitation techniques, cognitive-linguistic therapies, specific interventions for functional communication deficits and compensatory memory strategy training (Cicerone et al., 2000). Visual and spatial perceptual impairments, including unilateral neglect, are common following stroke and can significantly impede functional recovery and contribute to safety concerns. Psychologists can play an instrumental role in both evaluating visual and spatial perceptual functions and in initiating interventions (e.g., compensatory visual scanning for unilateral neglect) designed to address these serious sequelae of stroke (Cicerone et al., 2000; Duncan et al., 2005). Cognitive rehabilitation is multifaceted and is not the sole mandate of the psychologist. In fact, these therapies are more likely to be carried out by other members of the multidisciplinary team (such as occupational therapists or speech and language therapists), and are typically used to address attention and memory impairments, during individual treatments, administered over 1–6 months in inpatient settings (Stringer, 2003). In addition to cognitive assessment and rehabilitation, clinical psychologists can provide a range of other valuable services as members of the stroke treatment team. For example, mood disturbances following stroke are common, with post-stroke depression (PSD) observed in between 25% and 75% of patients, and mood lability, characterized by rapid and extreme fluctuations in emotional experience and expression, in a smaller but still significant percentage of patients (Duncan et al., 2005). Cognitive-behavioural and other brief supportive psychological therapies can be effective in the management of stroke-related mood disorders (Lincoln et al., 1997), and are especially important when pharmacological treatments are contraindicated or poorly tolerated.

OTHER AGE-ASSOCIATED HEALTH CONDITIONS RELEVANT TO REHABILITATION IN OLDER PEOPLE Age is a primary risk factor for a range of degenerative neurological diseases, such as Parkinson’s disease and amyotrophic lateral sclerosis (ALS). In addition, older adults are at increased risk for heart disease, diabetes (and related complications ranging from progressive visual impairments to limb amputation), orthopaedic injury (such as hip fracture), bone and joint degeneration (osteoporosis and osteoarthritis), sensory loss (such as hearing and visual impairment) and age-associated decline in memory and other higher brain functions. Many of these conditions can be the focus of rehabilitation and tertiary prevention programming (for example, minimizing the effects of progressive, degenerative disease), or progressive and innovative interventions that serve primary prevention (for example, modification of lifestyle to reduce risk factors pre-symptomatically) and secondary prevention functions (such as prevention of stroke following transient ischemic attack). For example, one emerging area of interest to rehabilitation specialists, including psychologists, involves the primary prevention of falls in older people (Binda, Culham & Brouwer, 2003). Falls can result in hip fracture and related morbidity, a loss of both mobility and functional independence, and can be complicated by fear of falling and post-fall anxiety syndromes. Clearly, the potential roles for primary, secondary, and tertiary rehabilitation programming are rich and varied for clinical psychologists, health psychologists, and clinical neuropsychologists, especially when working within the context of a multidisciplinary healthcare

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team. These roles include, but are not limited to, programme design and evaluation, assessment, individual and group behavioural and cognitive interventions, family interventions, team leadership, and patient advocacy.

EVALUATING AND PREDICTING REHABILITATION OUTCOME IN OLDER PEOPLE Factors Affecting Rehabilitation Potential Although both young and older adults have the potential to benefit from rehabilitation, a number of factors can place serious constraints on the effectiveness of interventions and should be evaluated thoughtfully by the treatment team prior to the initiation of rehabilitation programming. The first consideration is the medical stability of the patient (Patrick, Gaskoviski & Rexroth, 2002). This is particularly relevant to those in advanced old age who may be physically frail, vulnerable to falls, or suffering from high-risk medical conditions and consequent pharmacological treatments. A second important consideration is the current cognitive ability of the older person. Cognitive ability is multifaceted and competency is determined by the interaction of premorbid ability, ageing, and the effects of the illness or health-related events (TBI, stroke, or dementia, and so forth) on higher brain functions. For example, a basic-level ability to learn and retain new information is a prerequisite for most rehabilitation programmes. A third and related consideration is the ability of the patient to communicate with members of the treatment team. Severe, intractable, language impairment or global aphasia secondary to stroke or severe brain injury can significantly compromise the potential for most psychologically oriented strategies, although errorless learning techniques show some promise in rehabilitation of aphasic disorders, including anomias (Fillingham et al., 2003). Other considerations that may result from the illness or injury and limit the potential for rehabilitation include the person’s level of insight about the functional effects of the illness or disability and his or her evident motivation and drive to regain lost skills. Unmanageable aggression or disinhibition following stroke or TBI can seriously limit access to rehabilitation programming because of the associated increased risk to others and particularly to other frail older people. Treatment team members, including the clinical psychologist, need to understand and consider both the patient’s prior and present level of ‘real-world’ functioning in order to set appropriate and realistic goals for the rehabilitation phase of treatment. Family members or other caregivers are an important source of information about prior functioning in older people, particularly in the current cohort of older adults whose educational level and work-related achievements are only weakly associated with their premorbid intellectual abilities. Psychosocial resources and personality traits can have important direct and modifying effects on response to rehabilitation (Hays et al., 1997; Horowitz et al., 2003; Jang et al., 2003). Finally, older people who are being considered for rehabilitation programming should be screened for mood and other psychiatric disorders that may need to be treated prior to or concurrent with rehabilitation (LaBuda & Lichtenberg, 1999), and assessed for significant and uncorrected hearing and visual impairments that can compromise participation in many behavioural programmes (Scheuerle, 2000).

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EXAMPLES OF EMPIRICALLY-SUPPORTED PSYCHOLOGICAL INTERVENTIONS FOR REHABILITATION WITH OLDER PEOPLE Cicerone et al. (2000, 2005) have conducted extensive methodological reviews of the scientific literature and developed a set of evidence-based recommendations (practice standards, guidelines, and options) for cognitive remediation. Although these recommendations are not specific to rehabilitation with older people, they provide an excellent starting point for identifying the most effective and appropriate psychological treatments following TBI and stroke. For example, there is now evidence to support cognitive-linguistic therapies for people with language deficits after left-hemisphere stroke and to support training for apraxia after left-hemisphere stroke. In addition, the evidence supports visuospatial rehabilitation (scanning training) for deficits associated with visual neglect after right hemisphere stroke. There is also empirical support for cognitive rehabilitation following TBI, including compensatory strategy training for mild memory impairment, strategy training for postacute attention deficits, and interventions for functional communication deficits. For example, provision of environmental support for memory retrieval through the use of cues and reminders, familiarity judgements or recognition ratings, errorless learning procedures, wall calendars, diaries or date books, timers, checklists, and other external memory aids can be effectively used with patients of all ages (G¨unther et al., 2003; Kapur, Glisky & Wilson, 2004; Wilson et al., 1994; Wilson & Evans, 2000). Training in formal problem-solving strategies, verbal self-instruction, self-questioning, and self-monitoring is recommended to promote self-regulation for persons with deficits in executive functioning. For example, goal management training (Levine et al., 2000) is based on both clinical and experimental data and indicates that it may be possible to target dysexecutive functioning following traumatic brain injury. Similarly, external cueing systems (for example, checklists, or pager systems such as NeuroPage; Hersh & Treadgold, 1994) can be used to prompt appropriately timed actions in patients with executive impairments (Evans, Emslie & Wilson, 1998). Importantly, the practice guidelines set out by Cicerone and colleagues do not recommend the sole reliance on repeated exposure and practice on computer-based tasks, nor do they support memory retraining based solely on rote rehearsal or repetition. Computeradministered rehabilitation is usually considered inappropriate for the current cohort of older people, presumably because many have had relatively little experience with this technology. Nevertheless, there is a continuing interest in using computer-assisted cognitive training to prevent and treat cognitive deficits in older people (G¨unther et al., 2003). Contributions by clinical psychologists and neuropsychologists to innovative rehabilitation programmes for older people can go beyond the provision of cognitive assessment and remediation. For example, clinical psychologists can contribute importantly to evaluations of decision-making capacity in older people in rehabilitation settings (Moye, Armesto & Karel, 2005). In addition, as described by Duncan et al. (2005), there is evidence to support modified versions of cognitive behavioural treatments for post-stroke depression (Lincoln et al., 1997) and anxiety disorders (Shimoda & Robinson, 1998) that can complicate rehabilitation of physical, cognitive and functional abilities and contribute to disability in older people. Similarly, mood disorders following traumatic head injury are reported for a high percentage of patients (Jorge & Robinson, 2003). Landreville and Gervais (1997) reviewed the theoretical and empirical literature on the psychotherapeutic treatment of depression

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in older people with a disability and concluded that cognitive and behavioural therapies can be useful in reducing symptomatology (for further discussion of cognitive behavioural therapy with older people, see Chapter 27, this volume). However their review suggests that therapeutic approaches require some modification for use with depressed and disabled older people and are most likely to be effective in treating depression when offered as part of a multicomponent treatment programme, including psychosocial interventions and pharmacotherapy (Landreville & Gervais, 1997). An important final conclusion related to the provision of psychological services to older people in rehabilitation settings is that these services are most likely to be effective and relevant to the enhancement of real-world functioning when they are part of an integrated, holistic, and comprehensive programme offered by a well resourced healthcare team.

Measuring Response to Rehabilitation Determining the effectiveness of rehabilitation programming is an important consideration that is beyond the scope of this discussion. Briefly, outcome measurements can provide guidance for ongoing and subsequent treatments, and for follow-up and referral decisions. For example, goal attainment scaling (GAS) is a programme evaluation tool that provides individualized and quantifiable feedback that is useful in monitoring patient progress, specifically, and in evaluating rehabilitation programming more generally (Malec, 1999). There are other well researched outcome measures that are suitable for inpatient cognitive and behavioural units (Berner et al., 2004; Pender & Fleminger, 1999), and for measuring the social impact of disability in community-oriented rehabilitation programmes (Wood & Worthington, 1999).

FUTURE DIRECTIONS IN REHABILITATION FOLLOWING BRAIN INJURY IN OLDER ADULTS Robertson and Murre (1999) described principles of guided recovery for brain injury rehabilitation and proposed that rehabilitation will be most effective when delivered during critical early periods of recovery. They called for programming to be initiated ‘as soon as it is medically feasible’ and for the recruitment of behavioural experimental methods into standardized neuropsychological assessments to aid in the identification of ‘potentially restitutable residual functions’ that should be targeted during rehabilitation (p. 566). The recent focus on the assessment and rehabilitation of vegetative and minimally conscious patients (see Coleman, 2005 and Shiel & Wilson, 2005) is in keeping with Robertson and Murre’s principles of guided recovery and with the view that rehabilitation efforts can begin in the earliest stages of recovery. A recently published case study describes recovery from coma in an older person using early and integrated applications of both behavioural and electrophysiological techniques (for example, PET, MRI, TMS, evoked potential and EEG – Crossley et al., 2005). Related research has the potential to provide important insights about the relationships between behavioural and neurofunctional measures during recovery from severe brain injury, and about the predictive potential of these measures when administered in the earliest stages of recovery from coma (Crossley et al., 2005).

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Other recently reported innovative techniques may contribute to psychological rehabilitation for older people. For example, simple imagery mnemonics have been shown to improve the delayed recall of everyday relevant verbal materials, such as stories or information about appointments (Kaschel et al., 2002). Errorless learning techniques show promise in rehabilitation of aphasic disorders (Fillingham et al., 2003), and the inclusion of a programme of aerobic exercise as part of a comprehensive, multifaceted rehabilitation programme for older people may contribute to recovery of executive functions (Hall, Smith & Keele, 2001). Finally, recent reports of the effectiveness of a new multifaceted, theoretically based cognitive rehabilitative programme for older adults experiencing normal cognitive decline suggests that systematically delivered interventions can result in enduring improvements in memory performance, goal management, and psychosocial well-being (Winocur et al., 2007).

CONCLUSIONS Older adults have the potential to benefit from rehabilitation programmes that include assessments, interventions and strategies delivered by psychologists who are well integrated within interprofessional healthcare teams. There are many innovative, theoretically based and empirically supported behavioural strategies and interventions that will benefit older adults in rehabilitation programmes following TBI or stroke, or coping with degenerative neurological diseases or other health conditions that compromise daily functioning. These rehabilitation programmes for older adults are best delivered by psychologists and members of other health disciplines who are well informed about the effects of biological ageing and normal age-associated cognitive decline, who understand the potential for age bias in healthcare delivery systems, and who have the skills required to work collaboratively within interprofessional healthcare teams. Beyond clinical assessment and intervention, psychologists can bring to rehabilitation settings skills in programme development and evaluation and in clinical research that are required to identify the most effective and innovative rehabilitation techniques and to ensure knowledge translation in the service of patients of all ages.

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Reeder, K.P., Rosenthal, M., Lichtenberg, P. & Wood, D. (1996) Impact of age on functional outcome following traumatic brain injury. Journal of Head Trauma Rehabilitation, 11(3), 22–31. Resnick, S.M., Goldszal, A.F., Davatzikos, C. et al. (2000) One-year age changes in MRI brain volumes in older adults. Cerebral Cortex, 10(5), 464–72. Roberts, G.W., Gentleman, S.M., Lynch, A. et al. (1994) Beta amyloid protein deposition in the brain after severe head injury: implications for the pathogenesis of Alzheimer’s disease. Journal of Neurology, Neurosurgery, and Psychiatry, 57(4), 419–25. Robertson, I.H. & Murre, J.M.J. (1999) Rehabilitation of brain damage: brain plasticity and principles of guided recovery. Psychological Bulletin, 125, 544–75. Salib, E. & Hillier, V. (1997) Head injury and the risk of Alzheimer’s disease: a case control study. International Journal of Geriatric Psychiatry, 12, 363–8. Salthouse, T.A. (1991) Theoretical Perspectives on Cognitive Ageing. Erlbaum, Hillsdale. Salthouse, T.A. (2005) Relations between cognitive abilities and measures of executive functioning. Neuropsychology, 19(4), 532–45. Satz, P. (1993) Brain reserve capacity on symptom onset after brain injury: a formulation and review of evidence for threshold theory. Neuropsychology, 7(3), 273–95. Scheibel, A.B. (1996) Structural and functional changes in the aging brain, in Handbook of the Psychology of Aging (eds J. Birren, K. Schaie, R. Abeles et al.). Academic Press, San Diego, CA, pp. 105–28. Scheuerle, J. (2000) Hearing and ageing. Educational Gerontology, 26, 237–47. Shiel, A. & Wilson, B. (2005) Can behaviours observed in the early stages of recovery after traumatic brain injury predict poor outcome? Neuropsychological Rehabilitation, 15(3–4), 494–502. Shimoda, K. & Robinson, R.G. (1998) Effects of anxiety disorder on impairment and recovery from stroke. Journal of Neuropsychiatry and Clinical Neuroscience, 10(1), 34–40. Sliwinski, M., Lipton, R.B., Buschke, H. & Stewart, W. (1996) The effects of preclinical dementia on estimates of normal cognitive functioning in ageing. Journal of Gerontology, B Psychological Sciences and Social Sciences, 51(4), P217–P225. Stringer, A.Y. (2003) Cognitive rehabilitation practice patterns: a survey of American hospital association. The Clinical Neuropsychologist, 17(1), 34–44. Stuss, D.T., Craik, F.I.M., Sayer, L. et al. (1996) Comparison of older people and patients with frontal lesions: evidence from word list learning. Psychology and Ageing, 11, 387–95. Stuss, D.T. & Levine, B. (2002) Adult clinical neuropsychology: lessons from studies of the frontal lobes. Annual Review of Psychology, 53, 401–33. Stuss, D.T., Robertson, I.H., Craik, F.I.M. et al. (2007) Cognitive rehabilitation in the elderly: a randomized trial to evaluate a new protocol. Journal of the International Neuropsychological Society, 13(1), 120–31. Teasdale, G.M. & Jennett, B. (1974) Assessment of coma and impaired consciousness: a practical scale. Lancet, 1, 81–4. Teasdale, G.M., Pettigrew, L.E., Wilson, J.T. et al. (1998) Analyzing outcome of treatment of severe head injury: a review and update on advancing the use of the Glasgow Outcome Scale. Journal of Neurotrauma, 15, 587–97. Ushewokunze, S., Nannapaneni, R., Gregson, B.A. et al. (2004) Elderly patients with severe head injury in coma from the outset – has anything changed? British Journal of Neurosurgery, 18(6), 604–7. Vollmer, D.G., Torner, J.C., Jane, J.A. et al. (1991) Age and outcome following traumatic coma: why do older patients fare worse? Journal of Neurosurgery, 75(S37–49). Wilson, B.A. (1999) Principles and practices of rehabilitation, in Case Studies in Neuropsychological Rehabilitation Oxford University Press, New York, pp. 13–22. Wilson, B.A., Baddeley, A., Evans, J. & Shiel, A. (1994) Errorless learning in the rehabilitation of memory impaired people. Neuropsychological Rehabilitation, 4(3), 307–26. Wilson, B.A. & Evans, J.J. (2000) Practical management of memory problems, in Memory Disorders in Psychiatric Practice (eds G.E. Berrios & J.R. Hodges). Cambridge University Press, Cambridge, pp. 291–310. Wilson, J.T.L., Pettigrew, L.E.I. & Teasdale, G.M. (1998) Structured interviews for the Glasgow Outcome Scale and the Extended Glasgow Outcome Scale: guidelines for their use. Journal of Neurotrauma, 15(8), 573–85.

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Winocur, G., Craik, F.I.M., Levine, B. et al. (2007) Cognitive rehabilitation in the elderly: overview and future directions. Journal of the International Neuropsychological Society, 13(1), 166–71. Winocur, G., Palmer, H., Dawson, D. et al. (2007) Cognitive rehabilitation in the elderly: an evaluation of psychosocial factors. Journal of the International Neuropsychological Society, 13(1), 153–65. Wood, R.L. & Worthington, A.D. (1999) Outcome in community rehabilitation: measuring the social impact of disability. Neuropsychological Rehabilitation, 9(3–4), 505–16. World Health Organization (2007) Neurological Disorders: Public Health Challenges. World Health Organization Press, Geneva.

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Psychological interventions with people with dementia Bob Woods, Linda Clare University of Wales Bangor, Bangor, UK

INTRODUCTION This chapter is concerned with psychological approaches to working with people with dementia. The development of such approaches can be traced back over at least 50 years. For example, Cosin and colleagues published an evaluation of social and domestic activity and occupational therapy with people with ‘persistent senile confusion’ in 1958; they noted increases in purposive, appropriate behaviour in response to this innovative programme. In this chapter we will describe the major approaches that have been developed subsequently, outline the evidence base in relation to their effectiveness and place psychological interventions in the broader context of care and support for the person with dementia. There are a number of ways in which the various approaches might be grouped and categorized. For the purposes of this chapter, we will discuss them in relation to their main focus. Accordingly, we identify one group of approaches with an emphasis on stimulation of the senses and activity; a second group which focuses on the emotional world of the person with dementia; a third which aims to produce changes in behaviour and function; and a fourth group where the focus is on cognitive processes and function. These categories are not, of course, mutually exclusive, but they provide a useful way of considering the range of interventions. An approach with a particular focus may well aim to produce a different type of outcome; for example, a behavioural approach may aim to reduce depressed mood; or a cognitive approach may aim to improve quality of life or day-to-day function. In this chapter, we will not be considering several important areas which are covered in depth elsewhere in the handbook: psychological interventions in response to challenging behaviour (Chapter 33), or interventions with family caregivers (Chapter 32) or changes to the physical or social environment of a care setting (Chapter 17). In evaluating these intervention approaches, it is important to consider what changes will be of value to people with dementia and their supporters. A change of a few points on a measure of cognitive function may be of theoretical interest, but unless it contributes to changes in, say, the person’s wellbeing or day-to-function, it may not merit intensive therapeutic input. On the other hand, if a person’s anxiety and distress is reduced whilst Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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receiving a hand massage or listening to music, this may be worthwhile, even if the person’s negative emotional state returns at the end of the session. In the context of a condition where progression of impairment is typically seen, maintenance of function may be the appropriate goal, rather than improvement per se. In general, short-term interventions would be expected to have short-term effects; if treatment differences between intervention and control groups disappear at a follow-up evaluation, this may be seen as a failure to build in a maintenance component to the intervention, rather than a weakness of the original intervention. Randomized controlled trials (RCTs) are now seen as the gold standard in evaluating any intervention approach, but some caution is needed in relying only on RCTs in evaluating psychological approaches in dementia care (Woods, 2003). Psychological interventions cannot, of course, be double blind, in that the person must know which treatment they are receiving; whilst it is possible to arrange for those assessing the effects of the intervention to be independent from those offering the intervention, preventing the person with dementia or carer talking about the intervention is not always possible! Interventions that cannot be neatly ‘packaged’, or which are highly individualized, are also more difficult to evaluate using an RCT. Ensuring equivalence of treatment across participants is also much more difficult than with a pill. Placebo interventions are possible, to allow for nonspecific effects of the intervention. However, pragmatically it is possible to argue that these nonspecific aspects in fact form an important part of any intervention. Most importantly, RCTs provide information about what is effective for the average person with dementia. They provide little information about what will work for the individual person, and increasingly, it is recognized that an intervention that is helpful for one individual may not be effective for the next. It is important, therefore, that we find ways of recognizing ‘what works for whom’ and do not reject interventions because they do not work for everyone. It has been recognized for some time that the values and attitudes of those involved in delivering a psychological intervention can strongly influence its implementation. Negative attitudes and the presence of what Kitwood (1990) described as a ‘malignant social psychology’ can undermine and distort the application of any specific approach. For these approaches to be useful, they must build on a culture of person-centred care (see Chapter 10, this volume), where the person with dementia is respected as an adult person of value and worth, with a unique life history, individual preferences and needs, who is offered choices and supported in being as independent as possible.

STIMULATION AND ACTIVITY APPROACHES These approaches arose from the notion that people with dementia are understimulated, receiving inadequate sensory input. Reduced sensory input may be experienced for several reasons: first, normal decline in sensory acuity; secondly, the monotonous environments in which some older people live; and thirdly, some people withdraw and reject stimulation, cutting themselves off from the environment, perhaps as a way of coping with perplexing, almost alien, surroundings. Support came from sensory deprivation experiments, showing that even young, healthy people suffered from cognitive and perceptual disturbances when deprived of sensory stimulation for an extended period of time (see Holden & Woods, 1995). Sensory deprivation results as much from monotony as from lack of stimulation. Sensory deprivation, it was argued, would be especially damaging to people with dementia as their

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impaired recent memory forces reliance on external stimulation to maintain appropriate environmental contact. Whether or not the analogy holds – and the evidence in favour is at best circumstantial – pioneering studies (e.g. Bower, 1967; Cosin et al., 1958) set the pattern for many subsequent attempts to change the physical environment and to introduce care regimes and group-work encouraging more independence, socialisation and activity. Recreational, social, domestic activities and occupational therapy have become a widely accepted aspect of good practice and are now offered in many care settings. More recently, different types of stimulation or activity have been evaluated, and ways of increasing the response of people with dementia, including those most severely impaired, to activity and stimulation have been explored. For example, Orsulic-Jeras et al. (2000) report enhanced constructive engagement when people with dementia are participating in Montessori-based activities, compared with usual activities. The Montessori activities were offered on an individual or small-group basis, involved familiar materials, breaking down tasks into small steps and progressed from simple to more complex, accommodating to the individual’s skill level. With severely impaired people with dementia, Norberg, Melin and Asplund (1986) evaluated the effects of music, touch and objects expected to stimulate the person’s senses of taste, touch and smell (using substances such as fur, hay, bread, and camphor). Two people with dementia, who showed little, if any, verbal communication, were carefully observed whilst receiving the various forms of stimulation. A definite positive response to music was identified but no differences in reaction to different objects or to touch were detected. Similarly, Gaebler and Hemsley (1991) identified a response to music in the majority of a group of six people whose dementia was very advanced and with whom verbal communication was impossible. These studies are particularly important in their focus on people with severe impairments and their painstaking use of observational methods to reliably document a response that would otherwise be difficult to detect. Types of stimulation currently used included music, pet animals, massage, aromatherapy and physical exercise, as well as multisensory stimulation, which targets a range of sensory modalities. For example, Goddaer and Abraham (1994) showed a 63.4% reduction in agitation during mealtimes when relaxing music was played, in people with moderate-severe dementia. The effects of music on a less impaired group of people with Alzheimer’s disease have been evaluated by Lord and Garner (1993). Groups of 20 nursing-home residents took part in daily half-hour recreational sessions over a six-month period. One group listened to ‘big band’ music from the 1920s and 1930s, a second group was offered puzzle exercises and a third the ‘standard’ recreational activities of drawing, painting and TV. The music group showed better recall of personal information, and their mood and social interaction also improved compared with the other two groups. ‘The subjects in the music therapy sessions always smiled, laughed, sang, danced and whistled while listening to the music.’ The other activities did not elicit the same degree of anticipation, enjoyment and pleasure, and were less effective as triggers of social interaction. A few evaluative studies of the therapeutic use of pet animals have been reported (see also Wells, 2007). For example, Elliott and Milne (1991) and Haughie, Milne and Elliott (1992) evaluated the impact of a visitor with a trained dog in a psychiatric hospital ward where most patients had a diagnosis of dementia. In both studies interaction levels increased markedly when the dog and visitor were present, and in the latter study, a number of aspects of the participants’ behaviour, including mobility and dependency, were rated by nurses as improved when the dog was present.

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Burns et al. (2002) have reviewed promising evidence from three trials for the impact of aromatherapy (using lemon balm or lavender oil) on agitation. The individual nature of response to stimulation should be recognized: Brooker et al. (1997) evaluated hand massage and aromatherapy in four people with severe impairments. One person showed a significant improvement in agitation in the hour following massage or aromatherapy but two others appeared to be more agitated following the interventions, possibly feeling confined by the intervention. Most activity programmes have included some form of physical exercise, usually highly structured – light bending and stretching exercises whilst sitting in a chair, throwing a ball, knocking down skittles, brisk walking, rhythmical movements, movement to music, etc., all demanding task attention. Heyn, Abreu and Ottenbacher (2004) report a meta-analysis of the effects of exercise training in people with dementia and report positive changes in fitness and cognitive function. For example, in a six-month randomized controlled trial of twice weekly ‘psychomotor activation’ sessions (Hopman-Rock et al., 1999) physical exercise was associated with cognitive changes, including increased alertness, although little change on behavioural measures was reported. Multisensory stimulation (often known as ‘Snoezelen’) comprising calming music, visual stimulation from fibre optics and lava lamps, tactile stimulation, aromatherapy and so forth has been shown in one study (Baker et al., 1997, 2001) to be associated with improvements in mood and behaviour and reduced behavioural disturbance; an activity group (also for eight sessions) served as the control group. Spaull et al. (1998) have evaluated the effects of individual sensory stimulation sessions on four people with dementia. Interaction and interest increased during the sessions, and disturbed behaviour was rated as having reduced following the sessions. Livingston et al. (2005), from their systematic review, conclude that stimulation approaches, such as music and multisensory stimulation have a useful immediate effect but evidence is lacking for longer term effects. More recently, Van Weert et al. (2005), have evaluated an 18 month individualized ‘snoezelen’ programme in nursing homes. Staff were trained to build stimulation of the person’s preferred senses into their care plan, offering a consistent, tailored approach. Results were encouraging, with improvements in depression and apathy, and less disturbed behaviour. It has been argued that too much stimulation is unhelpful for people with dementia, and ‘reduced stimulation units’ have been described (Cleary et al., 1988). Clearly stimulus overload is to be avoided; many care environments are too noisy and too much happening around the person can be perplexing and can add to confusion. The emphasis in practice has been to devise stimulation and activity that will engage the person with dementia, that will be enjoyed and valued, and not act as an irritant. There will be individual differences, of course; some will not want to have their hands massaged, or do not like dogs and individual musical preferences must be respected. The growing interest in calming forms of stimulation suggests that some people with dementia are seen as overaroused, having high levels of internal stimulation, emerging as feelings of anxiety and agitation. The sensory deprivation hypothesis is too simplistic to encompass all these strands, but has been a useful starting point.

EMOTION-FOCUSED APPROACHES Validation therapy (VT) is an emotion-focused approach developed in the US by Feil, which began to receive attention in the 1980s (Feil, 1993). In part, it is a response to the

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overconfrontational implementation of cognitive approaches, such as reality orientation (see below). The emphasis on ‘correcting’ the person rather than seeking to understand his or her attempts at communication (Dietch, Hewett & Jones, 1989), was seen as producing negative emotional responses in the person with dementia ranging from withdrawal to hostility. Validation involves communication at the level of the emotions underlying the person’s words, validating these feelings as true, irrespective of how the words relate to our conception of current reality. The aim is to restore the person’s dignity and prevent deterioration into vegetation, through listening empathically and nonjudgementally, not challenging the person’s view of reality. The approach espouses a deep respect for people, valuing them as complete individuals. The person is seen as seeking to deal with unresolved issues from previous phases of life, with this process impinging on and influencing the person’s current state. Painful feelings from the past that are expressed, acknowledged and validated are thought to decrease in strength, whereas if they are ignored or not expressed they are said to heighten. Feil (1993) details different techniques for the different stages of this ‘resolution’ phase. These offer some insights into what may be more or less helpful in particular types of situations. The specific techniques include many aspects of nonverbal communication – use of touch, eye contact, tone of voice – as well as using music and reminiscence. The loss of recent memory, combined with sensory losses, is seen as leading to the retrieval of earlier memories and familiar faces, and ‘the need to go back to mend torn relationships’ (Feil, 1993, p. 30). There is thought to be a reason behind all behaviour, and an important technique is to link the person’s behaviour with the unmet human need underlying it. Three needs are seen as universal: the need to be loved and nurtured, the need to be active and usefully engaged and the need to be able to express deep, raw emotions to an empathic listener. The core technique is to recognize the person’s communication of feelings and emotions and to acknowledge and validate these, verbally and nonverbally. Whatever the person’s current reality, whatever the facts of the matter, their feelings have their own validity. To respond to emotions at a cognitive level alone is to ignore an entire (and probably the most important) dimension of communication. For example, many people with dementia speak often about their parents as if they were still alive. To respond at a cognitive level, to correct the person, may well miss a key issue for the person with dementia. Miesen (1992, 1993) has shown the importance of attachment for many people with dementia, reflecting a need for security and safety in a perplexing and at times frightening environment; this need for attachment returns to the parents, the original attachment figures, in the person with dementia who develops a ‘parent fixation’. This should then be seen as an expression of need, not simply as a sign of confusion. Validation therapy may be applied individually, as part of the overall practice of care, or in small group sessions (Morton & Bleathman, 1991). Music is used as a unifying activity in a VT group and group members are encouraged to have a specific role, such as song-leader, welcomer, etc. Discussion of a topic chosen to draw on the wisdom and experience of the group members takes up the largest part of the group (Bleathman & Morton, 1992). A Cochrane review (Neal & Barton-Wright, 2007) identified only three studies – all of validation therapy group-work – which could be included, with a total of 116 participants. The larger of these studies (Toseland et al., 1997) ensured that the validation approach was used appropriately, with training and supervision backed up by random sampling and monitoring of tape recordings of group sessions. The results of the review were inconclusive, although some positive findings favoured validation. In future research, attention needs to

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be given to the choice of appropriate outcome measures. Affect, agitation and engagement appear to be much more relevant than cognitive function, for example. The effects on staff and caregivers and the impact of individual VT require further study. Finnema et al. (2005) describe an evaluation of ‘integrated emotion-oriented care’ in 16 nursing home units in the Netherlands, involving 146 people with dementia. This approach involves elements of validation, sensory stimulation and life review (see Finnema et al., 2000), with the core aim of aiding adaptation to the consequences of the dementia to improve emotional and social functioning. Over a seven-month period the results were not dramatic but residents with mild to moderate dementia in the homes where emotion-oriented care was implemented showed less anxiety and less dissatisfaction than those in control homes. There were no differences attributable to emotion-oriented care for those with more advanced dementia. There was evidence that the extensive training provided for staff in the units where the intervention was implemented did make some difference to the care provided, particularly in relation to making use of knowledge about the resident’s life in their care; however, the extent of difference that the training made in day-to-day care is difficult to quantify. There is also a growing interest in the application of a broad range of psychotherapeutic approaches with people with dementia. Cheston (1998) and Kasl-Godley and Gatz (2000) provide helpful reviews, illustrating the lack of outcome research in this area to date. Earlier recognition and diagnosis mean that services are now in touch with people with dementia who are clearly aware that something is wrong, that they are not able to function as they did previously and who may have awareness of others (perhaps their relatives) who have had dementia. Sharing the diagnosis with such individuals provides a therapeutic platform to offer assistance with adjustment and adaptation (Husband, 1999), recognizing also that symptoms of depression and anxiety are common in people with dementia (Ballard, Bannister & Oyebode, 1996). Burns et al. (2005) report a randomized controlled trial of six sessions of individual psychodynamic interpersonal psychotherapy, compared with treatment as usual. Although there were no significant improvements following the intervention, the approach proved feasible with, and was appreciated by, people with early stage dementia. The therapy was carried out in the person’s home, and the therapist spent ten minutes after each session, listening to the caregiver’s needs and up-dating them on progress with the therapy; there was some evidence suggesting positive benefits for caregivers of people receiving the interpersonal therapy. Cheston, Jones and Gilliard (2003) describe psychotherapeutic groups for people in the early stages of a dementia, where the initial focus was simply: ‘what’s it like when your memory isn’t as good as it used to be?’ Participants were encouraged to share experiences and to discuss their emotional impact, whilst the group facilitators offered reflections upon the emotional significance of these experiences within the group context. Each group ran for ten weekly sessions. Overall, participants were significantly less depressed at the end of the group. ‘Forgetfulness’ was the main theme of the groups, encompassing the experience of memory failure, but also the pain and distress of being forgotten about, and, conversely, the desire to be forgotten about and to be able to forget about oneself. The groups engendered a sense of togetherness, with one participant saying: ‘I now . . . know I am not the only one.’ A number of initiatives are being developed to address the support needs of people with early stage dementia. Yale (1995, 1999) provides detailed accounts of setting up and

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running such support groups. Pratt, Clare and Aggarwal (2005) report a monthly open group meeting for people with dementia: the ‘Talking about memory coffee group’, with mutual support and reduced isolation described by participants, who decide together on the themes for discussion at each meeting. Zarit et al. (2004) similarly describe a ‘memory club’, but this offers a 10-session structured programme. Caregivers are also invited, with some time allocated for all the dyads to meet, as well as time for people with dementia and caregivers to have their own separate meetings. The aim is to empower and inform, and the programme has been evaluated very positively by participants. The focus to date on early stage dementia should not lead to neglect of the role that ‘being psychotherapeutic’ could have with people with more advanced dementia (Cheston, 1998). Psychodynamic listening may be an effective way of communicating with a person where rational connections may be difficult to discern and discourse becomes more symbolic and free flowing. Mutual understanding rather than change may then be the aim. Indeed, Cheston suggests that the argument for formal psychotherapeutic work is ‘essentially moral – that dementia must be understood as a personal tragedy, and that it is unacceptable that its most immediate victims should so often have to struggle unheard and unheeded against personal disintegration and social isolation’ (Cheston, 1998).

BEHAVIOUR-FOCUSED APPROACHES The main areas where behavioural approaches have been applied are in relation to behaviour which challenges (covered in Chapter 33, this volume), promotion and maintenance of independent functioning and mood.

Promoting Independence Most of the work in this area has employed skills training, breaking down activities into smaller components, prompting and rewarding success at each stage, and gradually reducing the level of prompting as the skill is (re-)learned. Prompting at first might be physical, guiding individuals through the activity, then, as they continue the task themselves, reducing to verbal and nonverbal prompts and external memory aids as reminders. For example, McEvoy and Patterson (1986), using such behavioural skill-training techniques, showed improvements in basic self-care skills, such as personal hygiene, dressing and bathing in people with dementia. Josephsson et al. (1993) used external memory aids to support a variety of everyday activities; this was successful in three out of four people with dementia; for the fourth, anxiety appeared to interfere with learning. Tappen (1994) reports results from an intensive activities of daily living (ADL) skills training programme. People with dementia in a nursing home, meeting in groups, received the intervention for two and a half hours, 5 days a week, for 20 weeks. They improved on ratings of ADL and goal attainment, compared with residents receiving no additional intervention. Beck et al. (1997), in a large study involving 90 nursing home residents with severe cognitive impairment, reduced the amount of help required in dressing. Again, the intervention involved simple behavioural and problem-solving techniques for use by nursing assistants. Burgio et al. (1986) reported increased mobility in eight nursing home residents, four of whom had dementia, following the introduction of an approach involving prompting and

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praise for walking more independently. Distance walked increased and amount of assistance required decreased, with gains maintained at a four-month follow-up. Improvements were so rapid that it is suggested they resulted from the environment having previously provided few opportunities for walking, rather than from relearning lost skills. Presumably environmental contingencies in this nursing-home setting may have discouraged walking, with staff perhaps finding it more convenient to have residents in wheelchairs. This is a good example of the existence of ‘excess disabilities’, where people function at a worse level than that determined by their dementia, in response to the behaviour and attitudes of their caregivers, exemplifying Kitwood’s (1997) concept of a ‘malignant social psychology’. Efforts to increase toileting skills have been less successful. The ‘prompted voiding procedure’, described by Burgio et al. (1988) and Schnelle et al. (1989) has the aim of reducing incontinence but does not aim to encourage self-initiated toileting. Nursing home residents are simply asked on a regular schedule, say hourly, whether they wish to use the toilet and praised for using the toilet and remaining dry. Results have been so dramatic that the intervention should, again, be considered as a change in environmental contingency, rather than a relearning procedure. However, self-initiated toileting became less frequent in the latter study and, unfortunately, when the research team leave, staff seem to prefer to change residents when they become incontinent, rather than continue with this preventative approach (Schnelle et al., 1993), suggesting that contingencies for staff also need to be carefully considered (Burgio & Burgio, 1990). Continence requires a number of different skills – finding the toilet, recognizing it, adjusting clothing and so on – and is affected in older people by a number of physical factors. Ouslander et al. (2005) and Schnelle et al. (2002) report evaluations of an approach combining prompted voiding with individualized physical exercise, aiming to increase strength and endurance; improvements in continence and fitness were noted but Schnelle et al. (2002) conclude that ‘fundamental changes’ would be needed in the staffing of most nursing homes to implement such an approach fully. Prompted voiding appears to have some effect on faecal incontinence (Ouslander et al., 1996) but was not effective in reducing nocturnal urinary incontinence (Ouslander et al., 2001). Some work has been reported aiming to enhance orientation around a ward or care home, through the use of training and/or use of signposts and other orientation aids (e.g. Hanley, 1981; Hanley, McGuire & Boyd, 1981; Lam & Woods, 1986; McGilton, Rivera & Dawson, 2003; Reeve & Ivison, 1985). These approaches have at times been included in evaluations of 24-hour reality orientation (see below). Results have generally been promising, with relatively simple training procedures, using signs and other landmarks in the environment, being sufficient to increase the person’s ability to find target locations, in what are often quite complex environments.

Mood Some consideration has been given to the applicability of cognitive-behavioural therapy (CBT) with people with dementia with lowered mood (Teri & Gallagher-Thompson, 1991; Thompson et al., 1990) although the evidence-base is not yet strong. Preliminary reports of CBT with groups of people with dementia (Kipling, Bailey & Charlesworth, 1999) and with individuals (Husband, 1999; Scholey & Woods, 2003) demonstrate the feasibility of this approach, at least in early stage dementia. In Scholey and Woods (2003) case-series of

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seven people with a mild degree of dementia there was a significant overall improvement in depression following eight sessions of CBT. Clearly the presence of cognitive impairment must lead to some adaptations, with more repetition, use of prompts and reminders and so forth, and more emphasis on behavioural activation. Amongst the themes emerging from these cases were feelings of insecurity, loss of control and a sense of hopelessness. Interpersonal issues were pertinent for many, and it was also noted that past memories of traumatic events became more difficult, as the coping strategies that had served well previously became weaker. Teri and Uomoto (1991) describe a more behavioural approach involving family caregivers in managing the depressed mood of the person with dementia, which has been evaluated in a RCT (Teri et al., 1997). The interventions involved working primarily with the family caregiver, with the person with dementia being included as far as possible. There were nine weekly one-hour sessions in each condition. The first involved teaching the caregiver to identify and develop pleasant events for the person with dementia, and later for themselves, as well as strategies for managing challenging behaviour. The second adopted a more flexible problem-solving approach, focusing on specific ‘depression behaviours’ of the person with dementia. A third condition offered a ‘typical care control’, with advice and support being offered, but no specific problem solving or behavioural strategies being adopted. In addition, there was a waiting list control group. Seventy-two ‘person with dementia plus caregiver’ dyads completed the study, having been randomly allocated to the four treatment conditions. Assessments were carried out blind to treatment allocation. Both the behavioural interventions were associated with reduced levels of depression, compared with the two control conditions. Interestingly, caregiver mood also improved. These gains were maintained at six-month follow-up, with no differences between the two active treatments. The active involvement of the caregiver, who is potentially able to ensure regular between-session practice and to enable generalization of skills and activities to the person’s everyday environment, is a key element of the approach. This approach is more recently described as the ‘Seattle Protocols’ approach (Teri et al., 2005), and can be delivered by a range of healthcare professionals with appropriate training. Outcomes include reduced caregiver depression and burden and reduced behaviour problems and increased quality of life for the person with dementia (Teri et al., 2005). Combined with an exercise programme (Teri et al., 2003) there were again reductions in depressed mood and also improved physical functioning. In conjunction with advice for the caregiver regarding sleep hygiene, and increased daytime exercise and daylight exposure, outcomes included improved sleep and, again, reduced depression (McCurry et al., 2005). In contrast, a similar programme in a nursing home context had no impact on sleep (Ouslander et al., 2006). In relation to anxiety, a pioneering study on the effects of relaxation techniques with people with dementia (Welden & Yesavage, 1982) reported improved ratings of behavioural function and less use of sleeping medication in those attending relaxation groups three times a week for three months. Control patients attended a discussion group. Suhr, Anderson and Tranel (1999) report a RCT, involving 34 patients, which has supported these findings, with reduced clinician-rated anxiety and behavioural problems and improvements on some tests of cognitive function in the group receiving training in progressive muscle relaxation (PMR). The control group in this study was trained in imaginal relaxation techniques. It is suggested that the PMR group responded better as learning this form of relaxation, with its successive tensing and relaxing of muscle groups, relies more on procedural memory,

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which is relatively spared in dementia. Imaginal relaxation, on the other hand, places a greater demand on cognitive processes, and so may be less appropriate with people with dementia.

COGNITION-FOCUSED APPROACHES In this section we first consider reminiscence work, which could, arguably, have equally been included as an emotion-focused approach. Whilst reminiscence involves the triggering and sharing of memories and experiences, it is their meaning and emotional significance to the person that makes this work potentially so rich and engaging. We then discuss cognitive stimulation, cognitive training and cognitive rehabilitation. These terms are sometimes used interchangeably in the literature (see Clare & Woods, 2004); we distinguish them as follows:

r Cognitive stimulation involves a variety of general activities with a cognitive element, often in a social or group context.

r Cognitive training involves repeated practice at specific, structured cognitive tasks, which may be tailored to the person’s ability level.

r Cognitive rehabilitation assists the person to achieve individualized goals, using a variety of means, according to an understanding of the person’s strengths and difficulties, which may include, for example, memory aids, targeted new learning or reducing anxiety about a particular aspect of the situation.

Reminiscence Work Reminiscence-based approaches have been widely used with individuals with dementia and in small groups, although there has often been a lack of clarity regarding the specific aims (Gibson, 2004; Woods & McKiernan, 1995). Photographs, music, and archive recordings and items from the past are used to prompt and stimulate a variety of personal memories. Reminiscence work with older people developed from psychotherapeutic considerations, emphasizing the place of life review in adaptation (Bornat, 1994; Coleman, 1986). Reminiscence has been used extensively with older people who are depressed as well as those with dementia and there is an accumulation of evidence for the effectiveness of various types of reminiscence work in reducing depressive symptoms in older people (Bohlmeijer, Smit & Cuijpers, 2003; Scogin & McElreath, 1994). Haight and Burnside (1993) point out that the terms ‘reminiscence’ and ‘life review’ have often been used interchangeably; they suggest that life review be used solely to describe an intervention where the therapist is seeking to assist the person in achieving a sense of integrity. This involves older people recalling and evaluating events and experiences throughout their lives, usually in a one-to-one setting with the therapist, who acts as a therapeutic listener (Garland, 1994). ‘Life review therapy’, as described here, is much more likely to involve working through memories and experiences that may at times be painful and difficult; it should be undertaken, like any other personal therapy, with the person’s consent, with a clear aim, by properly trained and supervised workers; it can be useful in early stage dementia (see, for example, Haight et al., 2003).

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‘Reminiscence’, on the other hand, is seen as having a variety of goals, including increased communication and socialization and providing pleasure and entertainment. It may be individual or group based; may be structured or free flowing; may include more general memories than specific events or experiences; themes and prompts are frequently used; evaluation of memories is not specifically encouraged and the focus is on a relaxed, positive atmosphere. Sad memories may emerge, but support is available from the group leader and other members, or from the worker in individual work, to contain any distress or pain associated with such memories. This approach is appropriate for people with a mild to moderate degree of dementia. Particularly in a group setting, awareness of participants’ life histories is important, to ensure appropriate support can be given if events that have traumatic connotations for certain individuals are being raised by other members, and there is a need to avoid an intrusive approach that invades individuals’ privacy. The cognitive basis of this approach stems from the apparent preservation of remote memory in dementia; the person appears to remember events from their childhood, whilst unable to recall what happened an hour previously. Of course, when this area has been systematically tested, recall for specific events from many years ago is not relatively preserved (Morris, 1996; Chapter 11, this volume); performance across the lifespan is depressed compared with age-matched controls. People with dementia, like normal older people, recall more memories from early life; such memories are often overlearned or well rehearsed, or have particular personal and/or emotional significance for the person concerned. Morris points out that studies of autobiographical memory indicate there can typically virtually be no recall from the person’s middle years; this disconnection must add greatly to the difficult of retaining a sense of identity (Woods, 1998). There has been remarkably little research on the outcomes of reminiscence work with people with dementia. Woods et al. (2005) carried out a Cochrane review and were able to include only a handful of RCTs. Although there were some positive indications of changes in cognition (including autobiographical memory) and mood, it was concluded that much more research was needed. Several studies have examined the immediate impact of involvement in a reminiscence group, with participants acting as their own controls. Head, Portnoy and Woods (1990) found an increase in interaction in one group, compared with an alternative activity but a group in another day centre failed to show a differential benefit from involvement in reminiscence activities. Brooker and Duce (2000) showed higher levels of wellbeing during reminiscence groups, compared with other activities and unstructured time, in people with dementia attending three day hospitals. Head, Portnoy and Woods (1990) point out that the relative efficacy of reminiscence work will depend on the alternative activities on offer. This is illustrated by Politis et al. (2004) who compared kitbased one-to-one ‘reminiscence’ sessions (involving quiz type questions) with resident-led one-to-one sessions in a nursing home. Apathy significantly reduced for residents receiving either intervention, with no difference between them. Further studies are needed regarding the outcomes of different types of reminiscence work, in relation to aspects such as wellbeing and autobiographical memory, where it might be expected to have most impact. A promising development is the involvement of family caregivers in reminiscence work with the person with dementia (Gibson, 2004; Thorgrimsen, Schweitzer & Orrell, 2002). Gibson (1994) describes the use of individual reminiscence work with people with dementia, in contributing to care planning. For five people with dementia, selected as the most ‘troubled or troubling’ residents of nursing homes, a detailed life history was compiled, from which a care plan was evolved. This included

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reminiscence-type work, such as trips and activities that related to the person’s interests and experiences, and the creation of an environment personalized and individualized according to the person’s own style and preferences. Residents were reported to have shown increased sociability, decreased aggression and less demanding behaviour following the implementation of this individualized approach. Staff also responded positively, recognizing more of the personhood of each individual. This study illustrates the value of life histories as a major influence in care planning, helping staff see the person in the context of their lifespan and so improving the quality of their interactions.

Cognitive Stimulation The definition of ‘cognitive stimulation’ proposed by Clare and Woods (2004) would appear to encompass an evidence base that was accumulating long before this term began to be used in the dementia care field (Woods, 2002). This relates to evaluations of reality orientation (RO) (Holden & Woods, 1995), a long-established psychosocial approach that has been used with older people with dementia for 50 years. It includes two main aspects: 24-hour RO, which involves a number of changes to the environment, with clear signposting of locations around the ward or home, extensive use of notices and other memory aids, and a consistent approach by all staff in interacting with the person with dementia; and, particularly relevant to consideration of cognitive stimulation, small, structured group sessions, meeting regularly, often several times a week for half an hour or so. A wide variety of activities and materials are used to engage the participants with their surroundings, to maintain contact with the wider world and to provide cognitive stimulation. A typical session would go over basic information (such as names of those in the group, day, date, time and place), discuss a current relevant theme of interest, perhaps play a number or naming game and finish with refreshments. Throughout there would be a tangible focus: a whiteboard for the current information; pictures or objects appropriate to the theme; personal diaries and notebooks for those able to record information for later use. There is a strong evidence base in relation to the RO and cognitive stimulation approaches. Spector et al. (2000) present a systematic review and meta-analysis of the RO literature, focusing on RO sessions. Six studies, including a total of 125 patients with dementia, were included; there was a significant effect of RO on both cognitive function and behavioural function. Spector et al. (2001) report the development of a cognitive stimulation programme from this review, comprising elements of RO and reminiscence, drawn from studies showing the most positive outcomes and comprising a range of activities encouraging cognitive activity in a social context (Spector et al., 2006). Spector et al. (2003) report an RCT of this programme with 201 older people with mild to moderate dementia, drawn from 23 care homes and day centres, who were randomized to standard care or to receive 14 bi-weekly sessions of the cognitive stimulation intervention. There were significant improvements in cognitive function and in self-reported quality of life for those participating. The size of the effect on cognition proved comparable to those reported in published studies on the most frequently used medications for people with Alzheimer’s disease (the acetylcholinesterase inhibitors). Evidence is provided for the cost-effectiveness of this approach (Knapp et al., 2006) with preliminary data suggesting that weekly sessions maintain the benefits for at least six months (Orrell et al., 2005). The improvements in quality of life appear to be mediated by the improvements in cognition (Woods et al., 2006). This suggests that the

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enhanced wellbeing is not simply a result of the social context of the groups, but is linked to cognitive change, although, in general, cognitive function does not predict quality of life in people with dementia (Thorgrimsen et al., 2003). Randomized controlled trials combining cognitive stimulation with acetylcholinesterase inhibitors are now appearing. Onder et al. (2005) showed improved cognitive function with a home-based stimulation programme, involving the family caregiver; Chapman et al. (2004) report improved overall global performance, including reductions in apathy and irritability, following an eight-week group cognitive stimulation programme. Olazaran et al. (2004) evaluated the effects of cognitive stimulation together with a physical exercise programme on people with cognitive impairment receiving acetylcholinesterase inhibitors. Cognitive and affective benefits were reported for those receiving the ‘cognitive-motor’ intervention. There does seem to be evidence then that these approaches can add to any improvements associated with currently available medication. The evidence does appear to support the effectiveness of cognitive stimulation approaches in maintaining cognitive function and quality of life, leading to its recommendation for people with mild to moderate dementia in practice guidelines (e.g. NICE-SCIE, 2006). Although initially there was a view that only those orientation items specifically taught are learned, more recent reports (such as Breuil et al., 1994; Zanetti et al., 1995) have tended to support the notion that more wide-ranging improvements in cognition may follow cognitive stimulation of this type. However, cognitive changes alone are of dubious utility and so reports of enhanced quality of life and wellbeing are especially important. Reality orientation fell out of favour in the US and UK because it was seen as being administered in a mechanical, inflexible, insensitive, confrontational manner (Dietch, Hewett & Jones, 1989; Holden & Woods, 1995). Delivered in a person-centred context, offering choice and flexibility of approach, cognitive stimulation has a role to play in the range of available interventions, although there is little evidence that it has any effects on behaviour and day-to-day function. Here, more focused, individualised and tailored approaches will be required.

Cognitive Training Cognitive training (sometimes called ‘cognitive retraining’ or ‘cognitive remediation’) involves guided practice on a range of standardised tasks reflecting particular domains of cognitive functioning, such as memory or attention. This approach assumes that regular ‘exercise’ has the potential to improve or maintain functioning in a given domain and that such improvements will somehow generalize beyond the immediate training content, although this view, which treats the brain as akin to a muscle, has been widely criticized (Bird, 2000). Cognitive training approaches used with healthy older people and older people with mild cognitive decline, variously defined and categorized, have demonstrated modest task-specific improvements but no generalization and very limited maintenance of gains (Rapp, Breenes & Marsh, 2002; Sheikh, Hill & Yesavage, 1986; Verhaeghen, Marcoen & Goossens, 1992). Early studies of cognitive training for people with dementia drew very clear negative conclusions about the benefits and applicability of such an approach, arguing that it was liable only to increase depression and frustration (Zarit, Zarit & Reever, 1982). Recent Cochrane reviews of RCTs in this area (Clare et al., 2003; Clare & Woods, 2007) also found no evidence that cognitive training produces improvements on

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standardized outcome measures of cognition, functioning or wellbeing, although modest short-term improvements in performance on targeted tasks can sometimes be observed. Despite these rather negative findings, there continues to be a great deal of interest in cognitive training interventions for people in the mild to moderate stages of Alzheimer’s disease and other dementias, and increasingly also for people with mild cognitive impairment (MCI); for a full review, see Clare (2007). Cognitive training interventions typically involve a selection of standardized exercises addressing particular domains of cognitive functioning, including one or more of the following: perception, attention, concentration, memory, language, conversation, reading. problem-solving, and motor skills (Beck et al., 1988; Cahn-Weiner et al., 2003; Davis, Massman & Doody, 2001; Heiss et al., 1994; Quayhagen et al., 1995; Quayhagen & Quayhagen, 2001; Schreiber et al., 1999). In some cases it is possible to choose among several difficulty levels. The training may be conducted in one of several formats: individual sessions with a therapist (Beck et al., 1988; Davis et al., 2001), home practice facilitated by the family caregiver (Quayhagen & Quayhagen, 2001), individual computer-based sessions (Heiss et al., 1994; Schreiber et al., 1999), or group therapy sessions (CahnWeiner et al., 2003) Here we will briefly review examples of RCTs from each of these categories. The individual therapy session approach was used by Davis, Massman and Doody (2001), who compared the effects of an intervention consisting of five weekly one-hour cognitive training sessions with a placebo therapy condition in people with early-stage AD. The cognitive training sessions involved learning face-name associations and using the technique of spaced retrieval (Camp, Bird & Cherry, 2000) to rehearse details of personal information. Following intervention, the trained group improved their scores compared to their own baseline performance on recall of face-name associations and personal details. Among a range of neuropsychological tests, there was only one significant difference, with the trained group performing better on one attentional task and there were no between-group differences in levels of depression or self-rated quality of life. Quayhagen et al. (1995) had family members engage the person with dementia in one hour per day of practice on tasks targeting memory, problem-solving and conversational fluency, comparing results with those of placebo and wait-list control groups. Following intervention, the training group performed significantly better on some aspects of memory and verbal fluency, but not on other aspects of memory or problem solving. Carer ratings of behaviour problems remained stable for the training group but declined for the other groups. However, aggregation of measures in reporting results makes the findings of this study difficult to interpret with certainty. An example of computerized training is provided by Heiss et al. (1994), who compared the effects of 26 weeks of twice-weekly one-hour sessions of computerised training involving practice on memory, perceptual and motor tasks with a social support placebo condition for people with mild to moderate AD. After 26 weeks no differences were found between the two groups on any measures. Cahn-Weiner et al. (2003) evaluated a six-week group memory training programme, comparing results with those of a group educational and support programme. The memory training produced no significant benefits in terms of neuropsychological test performance or caregiver reports of memory functioning and activities of daily living. It has been proposed that cognitive training could potentiate the effects of pharmacological interventions (Newhouse, Potter & Levin, 1997). Early studies found little evidence for this (Brinkman et al., 1982; Heiss et al., 1994) but brief reports of a preliminary study using

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acetylcholinesterase inhibitors (AChEIs) did provide some support for this view (De Vreese & Neri, 1999). More recent studies have usually included participants who are all receiving optimal doses of AChEIs. Studies in this area are subject to numerous methodological limitations but it is unlikely that the widespread failure to demonstrate significant effects of cognitive training can be attributed solely to methodological problems. In general, while it is very difficult to demonstrate that cognitive training has any effects on standardised measures of impairment, shortterm training-specific improvements may be achieved in some areas. Unfortunately there has typically been little attempt to harness the possible relevance of this to the person’s everyday life. Recently, however, a welcome trend towards adopting analogues of real-life tasks as the focus of training has emerged. Loewenstein et al. (2004) trained participants in tasks such as making change for a purchase and balancing a chequebook, demonstrating gains in targeted areas compared to control group performance, although it is unclear whether such changes could be generalized to the real-life setting. Cognitive training studies report some positive findings but the overall balance of evidence does not support the value of cognitive training for people with dementia. This is one of the factors that has contributed to the recent development of a different kind of cognitionfocused approach: cognitive rehabilitation.

Cognitive Rehabilitation Rehabilitation aims to enable people who are disabled by injury or illness to maximize wellbeing across a range of areas including physical health, psychological wellbeing and social relationships (McLellan, 1991). The rehabilitation concept is therefore centrally relevant to the provision of care for people with dementia at any stage of severity (Cohen & Eisdorfer, 1986; Marshall, 2005), given the importance of minimising excess disability, preventing the development of a ‘malignant social psychology’ (Kitwood, 1997), and supporting personhood and wellbeing. As dementia is a progressive condition, the aims of rehabilitation will inevitably change over time (Clare, 2003b). In the early stages, as the impact on cognitive functioning becomes evident, rehabilitation focusing on cognitive functioning (Wilson, 2002), termed ‘cognitive’ or ‘neuropsychological’ rehabilitation, is particularly relevant. In this approach, theoretical perspectives and practical techniques from neuropsychology, cognitive psychology, behavioural psychology and psychotherapy are combined within a rehabilitation framework that takes account of the personal context and surrounding social system. In relation to a disability model (World Health Organisation, 1998), this approach targets engagement in activity and social participation (disability and handicap) rather than underlying impairment. The aims are to achieve improvements in functioning in the targeted areas, and thus in wellbeing, rather than to increase scores by a few points on standardized cognitive tests. It will be immediately apparent, therefore, that while this approach is described as ‘cognitive’ it in fact addresses a broad spectrum of functioning. The application of this approach is grounded in a thorough understanding of the subjective experience and coping responses of the person with dementia and the family members (e.g. Clare, 2003a), and of the extent to which the person with dementia is able to be aware of the resulting symptoms or difficulties (Clare et al., 2004). Most of the work in this area has focused on people with early stage AD and this emphasis will be reflected in the following section. For

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a fuller discussion of this approach, with examples and sample intervention protocols, see Clare (2007). There is a strong rationale for focusing on cognition in early stage AD; indeed one can argue that cognition should always be considered. While cognitive impairments and particularly memory impairments are a defining feature, the problems are not global and a profile of strengths and limitations can be identified. Neuropsychological models of memory systems (Squire & Knowlton, 1995) indicate that episodic memory is severely impaired while many other aspects of memory, such as procedural memory, are relatively preserved (for a fuller discussion see Chapter 11, this volume). Thus, we can try to make use of the preserved aspects of functioning, and we can ensure that we place only limited demands on the impaired aspects. Similarly, in terms of memory processes, encoding is particularly severely affected, and this indicates that we need to focus on supporting effective encoding if new information is to be acquired. There is good evidence for cognitive plasticity in earlystage AD (Fern´andez-Ballesteros, Zamarr´on & T`arraga, 2005) and emerging evidence for a degree of underlying neural plasticity (Sperling et al., 2003; Parient´e et al., 2005). People with early stage AD can adapt their behaviour (Burgess et al., 1992), learn or relearn skills and procedures (Salmon, Heindel & Butters, 1992) and retain new verbal information (Little et al., 1986). However, they require greater support than other learners in order to demonstrate these capacities (B¨ackman, 1992) and this is one way in which cognitive rehabilitation can help. Cognitive rehabilitation interventions aim to identify and tackle the difficulties that are most relevant to people with dementia and their family members or other supporters, taking into account the person’s current level of functioning. A key element in this approach is the collaborative identification of goals and needs, reflecting the impact of cognitive changes on daily life and wellbeing, which are then addressed directly in the real-life context in order to improve functioning. Individual interventions are then designed to address these goals. Interventions generally fall into one of three categories – restoration, compensation or environmental modification. Aims may be to make the most of remaining memory abilities or enhance or maintain performance of everyday activities (for example, helping the person to remember important information so as to be able to continue with an enjoyed activity), to develop the use of compensatory aids and strategies in order to reduce demands on memory (for example introducing a calendar so the person can find out what day it is), or to alter the surroundings so as to better support everyday functioning. Where the aim is to make the most of remaining memory abilities, a number of principles can be applied to assist with taking in and retaining information. These include the provision of extra support at encoding and retrieval, for example by means of appropriate cues, mnemonics, or spaced retrieval (Camp et al., 2000; Hill et al., 1987; Riley & Heaton, 2000), and encouraging rich and effortful processing of information during encoding, for example through semantic elaboration, multi-modal encoding or subject-performed tasks (Bird & Kinsella, 1996; Bird & Luszcz, 1991, 1993; Hutton et al., 1996). While errorless learning, or the reduction of errors during learning, can produce good results, the most recent evidence finds no differences between errorless and errorful methods, suggesting that learning may be achieved through a variety of means (Dunn & Clare, in press). The application of these methods to address memory difficulties in early stage AD is illustrated by Clare et al. (1999, 2000, 2001, 2002), while Bird (2001) describes their application in addressing behavioural problems.

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Attempts to enhance or maintain performance of everyday activities involve building on the relative preservation of procedural memory. Here again, subject-performed tasks may be used to good effect (Bird & Kinsella, 1996; Hutton et al., 1996). Provision of cues can assist in establishing performance, after which the cues can be gradually faded out. There is evidence that attention to procedural memory functioning can support activities of daily living (Josephsson et al., 1993) and similar approaches can be applied to the restoration of basic skills such as using a spoon to feed oneself (Camp, Bird & Cherry, 1997). The use of external memory aids can help to compensate for the impact of impaired memory functioning on everyday life. Most of us use memory aids in one form or another, including simple aids such as diaries, calendars or shopping lists. For the person with dementia it may be possible to build on existing strategies to adapt these and make them more efficient. Introducing a new memory aid can be successful provided appropriate support is given for learning to use it. Memory books or memory wallets can help to maintain social engagement, serving as prompts for conversation (Bourgeois, 1990). Mobile phones can make it easier for the person with dementia to contact family members (Lekeu et al., 2003). The Internet can provide a way of finding useful information (Freeman et al., 2005), while the availability of digital records inherent in e-mail communication can be of great benefit for people with memory problems (Clare, Rowlands & Quin, in press). Developing technology offers growing opportunities for creative application in this domain (Baruch et al., 2004). Alongside attention to memory difficulties, an integrated approach to cognitive rehabilitation includes a number of other components. There may be value in providing the person with a range of memory strategies that will assist with various kinds of difficulty. It is of course important to consider other aspects of cognitive functioning as well, so it might be valuable to devote some time to issues such as ways of improving concentration. Most importantly, when engaging in cognitive rehabilitation, it is almost certain that emotional issues will emerge as a result of the focus on a difficult and possibly distressing set of impairments. Therefore, cognitive rehabilitation should include a focus on emotional responses. Finally, the person’s social context needs to be considered and it is important to work with family carers or other supporters to maximize the benefits of this approach. There is no single correct format for conducting a cognitive rehabilitation intervention. The whole point of this approach is that it is individually tailored to meet the specific needs of each person. Consequently it offers a creative opportunity for the clinical psychologist to engage in a meaningful and relevant way with people who have dementia and their family members, and to offer a constructive and holistic response to their situation and needs.

CONCLUSIONS There is now greater interest than ever before in psychological approaches to working with people with dementia, or at least in ‘nonpharmacological interventions’. Alternative approaches to medication, which have less harmful side effects, are urgently sought and there is great interest in their effectiveness. There is a real risk that in seeking to package such approaches so that they fit the strait-jacket of an evaluation by RCT, the essence of a psychological approach will be lost. Some key elements emerging were described here.

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The need for approaches tailored to the individual must be recognized. This is evident in the work on cognitive rehabilitation and also in relation to multisensory stimulation, where Van Weert et al. (2005) describe the development of individualized ‘snoezelen’ care-plans. No single intervention will be appropriate for every person with dementia. Skills need to be developed in assessing the person’s profile of strengths and abilities, preferences and interests, life story and values, in order to tailor the intervention to the individual. Involvement of family caregivers in interventions wherever possible is also recognized as essential. This is seen in cognitive stimulation programmes delivered in the person’s home (Onder et al., 2005) and in behavioural programmes for depression, sleep disturbance, etc. (McCurry et al., 2005; Teri et al., 1997, 2005). Increasingly, there is less separation between interventions for caregivers and interventions for people with dementia. For example, Graff et al. (2006) report an RCT of a 10-session occupational therapy intervention, carried out in the person’s home, involving the family caregiver, with people with mild to moderate dementia. The intervention involved a number of components: goal setting, compensatory and environmental strategies, aimed at improving activities of daily living, training for the caregiver, using cognitive and behavioural interventions, enhancing problem-solving and coping strategies, training the caregiver to supervise the person with dementia effectively. Results showed improvement (compared with no-treatment control group) on activities of daily living, with the person with dementia requiring less assistance following the intervention, caregiver sense of competence, and an assessment of motor and process skills. Benefits were maintained at six-week follow-up. The intervention appears to include elements of cognitive rehabilitation and training for caregivers, similar to the approach of Teri et al. (2005). The emphasis here is again on a joint approach. The joint reminiscence groups described by Gibson (2004) can also be seen as an intervention targeting both the caregiver and the person with dementia, and, importantly, their relationship. Related to the involvement of family caregivers is the importance of evaluating effects on family caregivers and on staff working with the person with dementia. The effectiveness of interventions in care homes depends fundamentally on staff input and staff attitudes (see Chapter 17, this volume) and their response also needs to be monitored carefully. This has been an issue, for example, in the prompted voiding programmes devised by Schnelle et al. (2002). Similarly, maintaining changes in the home setting will usually depend on input from family caregivers. Studies such as that reported by Teri et al. (1997), where depression was reduced both for the people with dementia and the caregivers are especially encouraging in this respect. What is the mechanism for the changes that are associated with the improvements noted previously with a wide range of interventions? The concept of excess disability is a good starting point; people with dementia are often capable of functioning at a higher level, given the appropriate conditions of support and encouragement in their care environment. This is demonstrated in a number of the skills training studies described previously (such as Burgio et al. 1986; Tappen, 1994). Approaches that focus on the person’s strengths, or which increase a sense of pleasure or mastery, or reduce anxiety that interferes with performance, may all reduce excess disability. As methods of analysing brain function, such as fMRI, become applied to monitoring the effects of such interventions, it will be of interest to see what the neural correlates may be. Potentially, these may lead to a new wave of targeted approaches. It is important to establish realistic, attainable goals for work in this area. The dementias provide many challenges, with a natural history of decline, a high risk of physical health

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problems, high rates of depression and anxiety and fluctuation of abilities. What can be achieved may be relatively small, certainly not a cure. The key issue is to select targets that are achievable and will make a distinct difference to the quality of life of the person and/or the caregiver. The person with dementia will have a limited capacity to learn new information; how important it is then to make sure this is used for information that will be helpful to the person e.g. how to use a memory aid to find out what is happening today, rather than learning what is happening today, which may change by tomorrow! Similarly, it is in general unrealistic to expect interventions to have a lasting effect; change needs to be built into the person’s care environment to maintain any improvements, or simply to prevent, or slow down, further decline. No one approach will hold ‘the answer’ for any person with dementia. The evidence-base reviewed here allows for a care plan for any individual to draw on a range of approaches, reflecting the person’s needs, strengths and social context. There must be realism as to what may be achieved; but emphasis must also be given to the value, to the person with dementia and to those who provide care, of those changes, however limited, in state and function that are achievable. Only when this is recognized will the necessary resources of staff time, support and training be made available. We have come a long way from the days when the view that nothing could be done for people with dementia held sway. Now the priority is to emphasize the human worth and value of people with dementia and their supporters, so that as a society we refuse to accept a lower standard of care for people with dementia than we would want for ourselves.

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Interventions for family caregivers of people with dementia Henry Brodaty Prince of Wales Hospital, Randwick, and University of New South Wales, Australia

and Karen Berman Prince of Wales Hospital, Randwick, Australia

INTRODUCTION In the US, more than 15 million adults provide care to ill or disabled relatives (Schulz & Beach, 1999), with informal caregivers providing 71% of long-term care and 85% of in-home care (Whitlatch & Noelker, 1996). In Europe, 66% to 80% of the 16 million people with dementia are cared for at home (European Institute of Women’s Health, 2005) so, clearly there are huge numbers of caregivers worldwide. The caregiving career is highly dynamic and evolving and the kinship relationship between care recipient and caregiver is extremely important. Family caregivers perform an important service for their relatives and for society but often do so at great cost to themselves (see Chapter 16, this volume). The decline in cognitive abilities, the loss of functional capacity, the dwindling companionship and the increasing demands of physical care and possible behavioural changes in patients with a dementing illness may impose escalating stresses on family caregivers (Brodaty & Hadzi-Pavlovic, 1990). Typically, caregivers offer their services for emotional and economic reasons, not because they are proficient at, or feel comfortable with, the type of care required. They frequently expect to, or are expected to, assume the role of caregiver without regard for the possible emotional, physical, and financial consequences (Kasuya, Polgar-Bailey & Takeuchi, 2000). Primary caregivers spend an average of 60 hours per week caring for the patient (Max, Webber & Fox, 1995). However, in many families the caregiving is shared, with other family members taking on a secondary caregiving role and providing periodic caregiving (Stone, Cafferata & Sangl, 1987). Families tend to keep the caregiving role within the family but may hire outside help (Brody, 1985). A hierarchical pattern of caregiver preference exists, Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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with older people turning first to a spouse, then to an adult child, then to another relative and finally to a friend for care (Antonucci & Hiroko, 1991; Cantor, 1979; Himes & Reidy, 2000). There are many reasons to offer interventions to caregivers of people with dementia. Caregivers have high levels of stress, depression and burden (Bedford et al., 1996; Brodaty, 2002; Haley et al., 1987; McCann et al., 2004); have impaired physical health (KiecoltGlaser et al., 1995; Shaw et al., 1997, 1999; Vedhara et al., 1999; Vitaliano, Zhang & Scanlan, 2003); are socially isolated (Thompson et al., 1993); and incur financial hardships (Kasuya et al., 2000; Luscombe, Brodaty & Freeth, 1998). Improving the quality of life of caregivers is likely to improve that of the care recipients and also to delay institutionalization. Dementia is a major health burden on society; costs have been estimated as AUD $6.6 billion in Australia in 2003, including indirect and caregiver costs (Access Economics Report, 2003 www.alzheimers.org.au) and as US $100 billion in the US (Schumock, 1998). Interventions that can help maintain people in the community for longer with at least an equivalent quality of life, if not a better one, are clearly worthwhile. Interventions are many and varied and some interventions are more effective than others (Brodaty, Green & Koschera, 2003) though none can alter the course of the disease (Zarit & Leitsch, 2001). While most programmes are targeted for one member of the dyad (either caregiver or patient) both are affected by the intervention and the benefits to one may be outweighed by potential distress to the other (Zarit & Leitsch, 2001). Additionally, the entire support system should be taken into account including other family members, community services and so forth (Zarit & Leitsch, 2001). In the later stages of the disease, the person with dementia may not be able to participate actively in the treatment and most treatments have been aimed at the caregiver(s) (Zarit & Leitsch, 2001). Caregivers benefit from support, education and training for the duration of their time as caregivers, which may be several years. Caregiver distress warrants intervention to reduce caregiver suffering and as an important mediator in the progression of the course of the dementia (Brodaty, 1998). The benefits of specific interventions include decreased caregiver stress (Kahan et al., 1985), improved caregiver coping skills (Brodaty & Gresham, 1989), reduced caregiver psychological morbidity (Brodaty & Gresham, 1989; Brodaty, Gresham & Luscombe, 1997; Kahan et al., 1985; Mittelman et al., 1993, 1996a; Rabins, 1998), decreased or delayed nursing home placements (Brodaty & Gresham, 1989; Ferris et al., 1987; Mittelman et al., 1993), improved survival (Brodaty et al., 1993) and improved knowledge of dementia (Kahan et al., 1985). Educational and emotional support per se appear to be only modestly effective (Gitlin et al., 2003), emotional support being slightly more effective, and the combination being more effective than either support alone (Rabins, 1998). Education alone is unlikely to produce any improvement in caregiver wellbeing (Cooke et al., 2001). Pinquart and Sorensen suggests that as behavioural problems cause the most stress in caregivers, they should be educated about coping with these as a priority (Pinquart & Sorensen, 2004). They also suggest that spouses may benefit more than other caregivers from interventions that reduce objective burden. The majority of interventions have shown mixed results (Brodaty, Green & Koschera, 2003).

What are the Effects of Caregiving on Caregivers? The caregiver is often regarded as the ‘second’ or ‘hidden’ patient. The combination of loss, prolonged distress and the physical demands of caregiving in older caregivers increases

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their risk of physical health problems (Vitaliano, Zhang & Scanlan, 2003). Caregivers providing more care have simultaneously shown more satisfaction with their lives and more burden (Beach et al., 2000; Cohen, Colantonio & Vernich, 2002; Lawton, Rajagopal, Brody & Kleban, 1992). Frustration and grief are frequently reported by caregivers as are hostility and anxiety (Anthony-Bergstone, Zarit & Gatz, 1988). Some caregivers care for the patient willingly and cheerfully while others do so grudgingly and become more distressed (Brodaty, 1994).

Targets of Intervention Multi-component interventions appear to be more effective than narrowly focused ones (Finnema et al., 2000) and programmes designed for individual needs appear more effective than generic programmes (Burgio et al., 2001; Knight, Lutzky & Macofsky-Urban, 1993), with nonindividualized programmes having little or no effect on caregiver burden (Acton & Kang, 2001; Brodaty, Green & Koschera, 2003; Vernooij-Dassen & Olde Rikkert, 2004). Yee suggested that as women are known to suffer more psychiatric morbidity as a result of the caregiving role, they should be specifically targeted as an ‘at-risk’ group (Yee & Schulz, 2000). Females who live with the person with dementia are the most vulnerable group of caregivers (Vernooij-Dassen, Felling & Persoon, 1997) and should be specifically targeted for intervention. Women are more likely than men to comply with home environmental modification, to implement recommended strategies and to derive greater benefits from intervention (Gitlin et al., 2001; Vernooij-Dassen, Felling & Persoon, 1997; Vernooij-Dassen et al., 2000).

Timing and Flexibility of Intervention Early intervention may be more effective than later intervention (Brodaty & Gresham, 1989). Different interventions may be required at different times during the course of the illness and all interventions should be flexible and geared to individual patient and or caregiver needs, taking into account migrant and minority families and other special cases. The length of the intervention should match the goal of the programme. In the meta-analysis by Sorenson et al., an intervention of seven to nine sessions appeared adequate to increase ability or knowledge but was not adequate to improve depression (Sorensen, Pinquart & Duberstein, 2002). The organization and funding of the intervention varies depending on country/state, department involved in care (specialist mental health service, nursing staff, social workers, psychologists and so forth) and the budget. A model of support services actively engaging with the families of the people with dementia appears to reduce caregiver distress (Woods et al., 2003).

ELEMENTS OF INTERVENTION A full continuum of intervention or training exists, from simple provision of information to specialized behavioural and psychological techniques. As caregivers gradually become socially isolated due to the caregiving role, their psychological wellbeing declines

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(Thompson et al., 1993) and thus interventions providing social contact and support should improve wellbeing of caregivers (Cooke et al., 2001).

Education and Information Knowledge and skills pertinent to the care of the patient are important to caregivers. Thomas showed that caregivers are often (43–45% of cases) ill informed of the patients’ diagnoses and the disease in general (Thomas et al., 2002). Once aware of the diagnosis, education for caregivers regarding the illness, medication use and ways of enhancing the care that they are providing is important. When caregivers accept the diagnosis and understand that the disease is chronic and without a cure, they are better able to participate effectively in an intervention programme (Zarit & Leitsch, 2001). Educating caregivers about the disease helps reduce caregiver negative affect (Chiverton & Caine, 1989) and improves communication with the patient, although caregivers may become more depressed in the short term (Zarit & Leitsch, 2001). Information about resources, services and training can be helpful. Caregivers are reluctant to use respite care. A better understanding of the respite care process may encourage caregivers to use and to benefit from this service (Brodaty & Gresham, 1992; Zarit & Leitsch, 2001). Forward planning and advice regarding using advance directives are usually proffered. Maintaining their individual identity and interests is important for caregiver welfare. Information is clearly important; however, information alone does not decrease caregiver burden or impact significantly on the patient (Marriott et al., 2000).

Teaching Behavioural Strategies Traditionally, behaviour modification has looked at the ways in which the social and physical environment influences people’s behaviour by reinforcing it. The environment can be modified to achieve the required behaviour on the part of the subjects. Teri et al. found that pleasurable event planning and use of problem-solving techniques administered by caregivers improved depression levels in both patients and caregivers (Teri et al., 2003). In another study they demonstrated that an exercise training programme for people with Alzheimer’s disease, combined with teaching caregivers behavioural management techniques, decreased frailty and improved behavioural problems in the patients (Teri et al., 1997). Group and individual behaviour management therapies have been trialled with some success, as discussed below in the ‘outcomes’ section.

Counselling This involves a therapeutic relationship between the caregiver(s) and a trained professional. Counselling needs are different at each stage as caregiving requirements change, including the need to provide comfort for the family that is mourning the slow loss of parts of the person with dementia (Mendez & Cummings, 2003). Caring for people with dementia is very different from caring for people with other conditions; it is far more demanding, and changes constantly as the disorder progresses. In the early stages of the condition, the caregiver is involved in minor day-to-day help, for example cooking, cleaning and banking.

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Later, personal care is needed as well. Later still, round-the-clock care may be required. Caregivers of people with dementia may need to deal with the person’s lack of insight and behavioural problems in addition to their physical needs. The person’s resentment, anger and communication difficulties all add to the burden of care. Counselling gives caregivers ‘permission’ to seek assistance and offers validation, (Kasuya, Polgar-Bailey & Takeuchi, 2000) helping to normalize their feelings and to reassure them. The therapist may teach selfmonitoring behaviour, challenge negative thoughts and help caregivers develop problemsolving skills. Counselling can offer fresh insight, introduce caregivers to alternatives, offer support, change caregiver responses to behavioural disturbances, and offer a good opportunity to include other family members in the care of the patient and to distribute the burden more equally between family members (Mendez & Cummings, 2003). Counselling also includes practical, legal and financial advice and directs attention to the caregivers’ physical health.

Anger Management Anger is a common negative emotion experienced by caregivers (Anthony-Bergstone, Zarit & Gatz, 1988). Coon et al. developed an intervention project aimed at 169 female caregivers (aged 50 years and over and with normal cognition) who were the primary caregivers of people with dementia in the community (Coon et al., 2003). Caregivers were randomly assigned to one of three groups: anger management, depression management and a group with no intervention (waiting-list controls, who were offered the opportunity to participate in one of the classes at a later date). Interventions were psycho-educational and skill training, enabling caregivers to master self-management skills.

Caregiver Training Programmes Training programmes that include all the above, often in conjunction with referral to local Alzheimer’s associations, may reduce caregiver distress and delay nursing home admission (Brodaty, Gresham & Luscombe, 1997; Mittelman et al., 1996). An example of an intensive training program was conducted at Prince Henry Hospital in Sydney. Groups of four couples at a time were admitted for 10 days to a hospital ward where they underwent an intensive, highly structured training programme, which included education, counselling, skills training, medico-legal advice, extended family discussions, respite rehearsal and opportunity to form or join support groups (Brodaty & Gresham, 1989). For the first year after their course, the groups of caregivers received follow-up telephone conference calls every two weeks gradually decreasing to four- and then six-weekly as well as three-monthly review sessions. After the first year caregivers were contacted annually by telephone. Couples, who were mainly spouses, were randomly allocated to receive the training program immediately or after a delay of six months or to a control group in which only the care recipients, four at a time, were admitted for 10 days’ respite. Caregivers in all groups received the same followup. Positive outcomes, including in relation to caregiver distress, were found at follow-ups extending over several years (Brodaty, Gresham & Luscombe, 1997). A programme designed to teach caregivers for older people with disabilities caregiving skills and techniques was highly valued by participants (Mahoney & Shippee-Rice, 1994).

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The programme also enhanced the caregivers’ sense of competency and reduced the risk of physical strain. A successful programme trialled in six centres in Sweden (Jansson et al., 1998) trained family caregivers and volunteers together. The volunteers later relieved the caregivers by providing in-home help. Both caregivers and volunteers expressed satisfaction with this training programme. Brodaty (1996) reported that caregivers can be taught to avoid triggering aggressive behaviour, new ways of dealing with aggressive behaviour and ways of lessening the severity of inappropriate behaviours when they do occur.

Family Intervention Programmes Family intervention programmes are individually tailored to suit each family’s specific needs. They aim to help caregivers cope better with their own emotional state and to ensure that their own behaviour is more consistent, resulting in positive consequences in dealing with the patient. Intervention programmes that involve both patients and families, that are more intensive and are modified to the caregivers’ needs, appear to be more successful than counselling alone (Brodaty, Green & Koschera, 2003).

Support Groups A support group is a gathering of people with the same illness, condition or problem who meet to share information, experiences, problems and solutions. Run by members for members, the groups help members to develop a sense of self-esteem and courage to face the difficulties that may lie ahead. Support groups for caregivers of people with dementia have been well received since their introduction in the late 1970s (Fuller et al., 1979; Marriott et al., 2000). Groups may be large national associations, self-help groups or telephone or computer support services. Importantly, caregivers/other family members who attend these groups are not regarded as ‘patients’ but as people who have an increased risk of becoming overburdened by the caregiving role. This is an important difference between a support group and a psychotherapy group (Cuijpers, Hosman & Munnichs, 1996). Support groups teach caregivers that they are not alone in their daily struggle, reduce caregivers’ sense of isolation and are educational. Anecdotally, their regular newsletters are valuable to members. Professionally led support groups are more formally structured (Brodaty, Green & Graham, 2000) and appear to produce greater improvement in caregiver’s psychological functioning, whereas peer-led groups have been found to produce the greater increase in informal support networks and the extent to which caregivers feel able to handle the care-giving role (Toseland, Rossiter & Labrecque, 1989; Zarit et al., 2004). Facilitators of peer-led groups usually are, or have been, caregivers themselves. Support groups should appeal to the local community as far as cultural and ethnic values are concerned (Brodaty, Green & Graham, 2000). In some countries there is a wide choice of support groups based on gender, age, setting of care and stage of disease (Gwyther, 1998). Computer support networks have also been found to be an effective tool in decreasing strain for some caregivers (Bass et al., 1998; Brennan, Moore & Smyth, 1995) and are a boon for younger caregivers and those living in remote areas (Brennan, Moore & Smyth, 1992). Alzheimer’s Associations or societies exist in over 75 countries worldwide (see Alzheimer’s Disease International, www.alz.co.uk). They provide education, support,

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counselling, telephone helplines, advocacy, and, in many places, direct services such as day centres and even nursing homes. The more developed associations fund research directly and are very effective in lobbying government. At the heart of the Associations are the support groups. Customarily these meet monthly and offer local caregivers the chance to ventilate, to learn from others and to socialise. Empirical data regarding the efficacy of self-help groups are lacking but anecdotal accounts are positive (Brodaty, Green & Graham, 2000). Not all caregivers will join an association or even obtain information from one; for example, caregivers with large informal networks are less likely to be members. The commonest reason for caregivers not contacting their local association is lack of awareness (Brodaty, Green & Graham, 2000).

Telemedicine Services These services provide medical advice and support from a distance (Harvey et al., 1998). The CANDID (Counselling and Diagnosis in Dementia) telemedicine service was set up in the UK to provide medical advice and intervention from a distance for the patient, the caregiver and the general practitioner or other health professional involved in dementia care. The service is promoted for (caregivers and) patients whose dementia began before the age of 65 and has been used by a broad range of caregivers and professionals, although medical professionals have made less use of the service than was anticipated. ‘Computerlink’ is an electronic network, based in the US, designed to provide social support to caregivers of patients with Alzheimer’s disease (Brennan, Moore & Smyth, 1992). Internet support has been conducted with some success for some caregivers (Bass et al., 1998; Brennan, Moore & Smyth, 1995). In Australia, a national telephone hotline was established to provide advice to family and professional caregivers on management of behavioural and psychological symptoms of dementia (www.alzheimers.org.au). Dementia Advocacy and Support Network International (DASNI) is an international support group whose activities include an Internet-based support group for people with all forms of dementia. The twice-daily Internet chats help to alleviate loneliness and isolation and to educate participants about living with dementia. The DASNI Web address is: www.dasninternational.org. Their daily chat address is www.alzinfo.org (Anonymous, 2005).

Formal Care Formal care services include Meals on Wheels, home care, day-care, in-home respite care (sitting), residential respite care and permanent care. Designed to give the primary caregiver respite from caregiving duties, these services are needed by caregivers at different stages of the caregiving process, though it has been suggested (Knight, Lutzky & MacofskyUrban, 1993) that respite care is a middle-to-late service need. It may also include home modification advice. Adjustments in the home environment are usually necessary to create a safe living environment – for example, protection from hot surfaces, unlit gas stoves or sharp objects and perimeter locks to secure wandering patients (Mendez & Cummings, 2003). Respite care provides caregivers with a break from their role. Forms of respite care are:

r Day-care – where the person with dementia attends an activity centre for a few hours. r Night-care – where someone stays overnight to allow the caregiver a restful night.

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r In-home respite – where a professional caregiver comes into the person’s home to spend time with the person with dementia.

r Residential respite – where the person with dementia is admitted for a period, usually days to weeks. This may be offered as an emergency, for example if the caregiver takes ill, or as planned respite, perhaps so that the caregiver can take a holiday. Other innovative forms of respite have been devised, such as taking a group of people with dementia on a holiday, with or without their caregivers. Respite care may be provided by trained or untrained staff or volunteers (Lee & Cameron, 2004). Ideally patients and caregivers should be able to choose the amount and timing of the respite, but in fact this does not often occur as caregivers are limited by the type and availability of respite care in their area (Lee & Cameron, 2004). The amount of services offered differs by country and within countries, as does the cost of using the services. Respite is often used in emergency situations, such as when a caregiver is unexpectedly hospitalized, and here again choice of respite may be limited. The Family Survival Project (Family Survival Project, 1984) developed the concept of minimal required hours of respite care. It concluded that eight hours per week is the minimum number of hours necessary to achieve relief from caregiving work. Respite programmes not meeting the respite requirements of caregivers may be ineffective. The use of formal support services is much higher in caregivers of dementia patients than caregivers of other older patients (Philp et al., 1995), particularly the use of home help, daycare and district nursing services. However, even when offered residential respite care, only slightly over half of caregivers avail themselves of this service (Lawton, Brody & Saperstein, 1989). Caregivers of people with dementia are less satisfied with services than caregivers of people with nondementing illnesses and have more unmet needs (Bedford et al., 1996). There is little evidence to suggest that respite care provides long-term benefits to patients or to caregivers or even improves outcome (Lee & Cameron, 2004; Montgomery & Borgatta, 1989), but daycare programmes are cost effective alternatives to nursing home care and may delay institutionalization of patients who cannot be managed at home on a full time basis (Mendez & Cummings, 2003). Zarit found that caregivers of relatives with dementia who used adult daycare services for at least twice each week for a minimum period of three months experienced lower levels of caregiver related stress and better psychological wellbeing than a control group not using this service (Zarit et al., 1998). Short-term (three months) and long-term (12 months) benefits were found; however, the caregivers’ feelings of ‘role-captivity’ were not improved. As well as giving the caregiver a much-needed break, residential respite can be an opportunity for a professional reassessment of the patient’s condition and care needs.

OUTCOMES OF INTERVENTIONS Outcomes of caregiver interventions are difficult to compare as there is heterogeneity in caregiver age and relationship to the patient, ‘dose’ and duration of intervention, length of follow-up and types of measures used. Studies without a delayed follow-up may miss impacts of treatment, which, in some studies, may manifest after a delay and may be

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maintained for some time (Cooke et al., 2001). Some studies have control groups; others do not. Some interventions can make a difference to the caregiver although Cooke suggests that approximately 66% of interventions targeted at caregivers of people with dementia do not produce the desired outcome (Cooke et al., 2001). However, it is rare for any deterioration to be recorded in outcome measures (Cooke et al., 2001). Several reviews or meta-analyses have been published. Brodaty et al reported interventions reduce caregiver stress (effect size (ES) = 0.31; 95% confidence interval (CI) = 0.13 − 0.50), enhance caregiver knowledge (ES = 0.51; CI = 0.05 − 0.98), delay nursing home admission and improve patients’ psychological wellbeing (Brodaty, Green & Koschera, 2003). In the meta-analyses by Sorenson et al. (Sorensen, Pinquart & Duberstein, 2002), adult child caregivers benefited more from interventions than did spouse caregivers and women benefited more than men (Charlesworth, 2001). Also the majority of the benefits persisted an average of seven months post-intervention (Sorensen, Pinquart & Duberstein, 2002). The most consistent positive effects of caregiver interventions were found for psychotherapy and psychoeducational interventions, which produced improvements across almost all outcome measures (Sorensen, Pinquart & Duberstein, 2002). In Cooke’s review of psychosocial interventions, 60% of caregivers improved on measures of psychological wellbeing and in 47% levels of caregiver burden were reduced (Cooke et al., 2001). One study found levels of burden had increased (Goodman & Pynoos, 1990). However, in their review, Pusey and Richards found that individualized interventions using problem-solving and behaviour management were the most effective forms of intervention (Pusey & Richards, 2001). Unsuccessful interventions are short educational programmes, support groups alone, single interviews and brief interventions or courses that were not supplemented with longterm contact (Brodaty, Green & Koschera, 2003; Brodaty & Gresham, 1989). Social and health services other than respite care seem to have no consistent impact on caregiver distress (Knight, Lutzky & Macofsky-Urban, 1993). According to Zarit, spouse caregivers, caregivers with less formal education and caregivers who feel trapped do not benefit from day-care (Zarit, 2005). Yates found that the use of formal services did not alleviate either caregiver load or caregiver depression (Yates, Tennstedt & Chang, 1999).

Outcomes of Education Most studies assessing disease knowledge demonstrate improvement following education (Cooke et al., 2001). Increased knowledge does not necessarily lead to improved caregiver wellbeing or decreased caregiver burden. Indeed only 27% of the studies showing improved knowledge also reported improved wellbeing or burden. Caregiver education can, however, have some impact on improving patient behaviours. In a controlled trial of 50 caregivers of Alzheimer’s disease patients, the provision of verbal and videotaped material, behavioural problems and lists of possible interventions led to (nonsignificant) improvements in patients’ behavioural scores, whereas scores in the control group increased slightly. Despite the nonsignificant result, 75% of caregivers rated the interventions as ‘frequently’ or ‘always’ effective (Burgener et al., 1998). Livingston reported that psychoeducation intended to change caregivers’ behaviour is effective, especially if provided in individual rather than group settings, and improvements

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in neuropsychiatric symptoms associated with these interventions are sustained for some months (Livingston et al., 2005).

Outcome of Anger Management Training Anger management skills training led to reduced symptoms of anger, hostility and depression, as well as increased self-sufficiency in managing behaviour problems and controlling upsetting thoughts (Coon et al., 2003).

Outcomes of Counselling Mittelman et al. reported that a combination of individual and family counselling was effective in reducing caregiver depression and delaying nursing home admission (Mittelman et al., 1993, 1995, 1996) and the effects on reducing caregiver depression persisted over several years’ follow-up (Mittelman et al., 2004). Whitlatch found that caregivers in individual and family counselling were more likely to have successful outcomes on all dependent measures (the Brief Symptom Inventory, personal strain and role strain) than those not receiving counselling (Whitlatch, Zarit & Von Eye, 1991). Li showed that social participation improved depressive symptoms in daughter caregivers, and emotional support buffered the stress emanating from behavioural problems and functional limitations in the parent (Li, Seltzer & Greenberg, 1997).

Outcomes of Support Groups Professionally led support groups appear to produce the greater improvement in caregivers’ psychological functioning, whereas peer-led groups have been found to produce the greater increase in informal support networks and the extent to which caregivers feel able to handle the care-giving role (Toseland, Rossiter & Labrecque, 1989). Disadvantages of support groups include the possibility that a leader may be lacking in appropriate skills and the difficulty that some severely distressed caregivers may have integrating into the group (Zarit, Anthony & Boutselis, 1987). Cuijpers et al. found that participants in support groups experienced four broad categories of support: information, advice on how to cope with the situation, and moral and emotional support (Cuijpers, Hosman & Munnichs, 1996). Caregivers felt that they benefited greatly from this support. An earlier study by Gonyea however, found that support groups focused primarily on education and peer support with less attention being paid to the emotional needs of the caregivers and the families (Gonyea, 1989). Support groups can reduce caregiver stress and improve caregiver and patient quality of life (Mendez & Cummings, 2003) but are less effective than highly structured individual interventions (Gallagher-Thompson & DeVries, 1994; Marriott et al., 2000). A Dutch study found support groups to be particularly effective for caregivers who were dissatisfied with their caregiving role and who had no job, and when patients were more apathetic and lived in nursing homes (Cuijpers, Hosman & Munnichs, 1996).

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Outcomes of Technology-based Interventions Brennan et al. reported significant improvement in caregivers’ confidence and decisionmaking following their participation in a computer support programme (Brennan, Moore & Smyth, 1995), while Goodman et al. demonstrated significant improvement in social support and knowledge (but not burden) following a programme of telephone support and information for caregivers of Alzheimer’s disease patients (Goodman & Pynoos, 1990). However, neither study showed evidence of any impact on the mental health of the caregivers.

Outcomes of Multicomponent Interventions In general multicomponent interventions were found to be the most effective in persons with dementia and their caregivers (Vernooij-Dassen & Olde Rikkert, 2004). In a meta-analysis of 30 studies (out of the 45 that met criteria for inclusion) of intervention for caregivers of people with dementia, Brodaty et al. found significant improvements in caregiver psychological distress, caregiver knowledge, caregiver main outcome measures and patient mood but not in caregiver burden. Success was more likely if patients were involved as well as caregivers (Brodaty, Green & Koschera, 2003). A meta-analysis of 78 intervention studies (for six outcome variables and six types of intervention) showed significant improvements in caregiver burden, depression, subjective wellbeing, perceived caregiver satisfaction, knowledge and care recipient symptoms; however the effect of multicomponent interventions on caregiver depression and care-receiver symptoms was not significant (Sorensen, Pinquart & Duberstein, 2002). The difference in findings may be explained by the categorization or grouping of different interventions under this rubric. The meta-analysis by Brodaty et al. excluded respite care, while that of Sorenson and Pinquart included respite care and a number of less intensive interventions not considered as multi-component interventions. Sorenson and Pinquart also reported that group interventions were more effective than individual interventions and the length of the intervention was also important in alleviating caregiver depression and patient symptoms. Spouse caregivers benefited less from intervention than did adult child caregivers. In this meta-analysis, the majority of the effects persisted for an average of seven months post-intervention (Sorensen, Pinquart & Duberstein, 2002). The REACH (Resources for Enhancing Alzheimer’s Caregiver Health) multicomponent intervention programme for patients with Alzheimer’s disease and their caregivers reported the following results (Schulz et al., 2003):

r Combined active interventions were better than control conditions in reducing caregiver burden.

r Active interventions that emphasized active engagement of caregivers had the greatest impact in reducing caregiver depression.

r Women, and those with high school or lower education who were in active interventions, reported reduced burden compared with similar individuals in control situations.

r Caregivers in active intervention who were Hispanic, those who were not spouses and those who had less than high school education, reported lower depression scores than those with the same characteristics who were in control conditions.

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A treatment model developed by Zarit included psychoeducation, support, behavioural management training and making better use of available networks, in either a support group setting or a family/individual counselling setting (Zarit, Anthony & Boutselis, 1987). The model was evaluated in comparison to a wait-list control group. At one year there was a time effect – the Burden Interview and the Brief Symptom Inventory scores of the treatment group had declined but there was no group × time effect. The attrition rate was very high in this study: a 22% dropout after the first interview and a further 14% dropout during the remainder of the study. Results did not allow for clear-cut conclusions regarding the benefits of group or family intervention or differences between them. Subsequently Whitlach et al. reanalysed the data using the method of prediction analysis, and found that compared with subjects on a waiting list or enrolled in support groups, caregivers in individual and family counselling were more likely to have successful outcomes on all dependant measures (Brief Symptom Inventory, Personal Strain and Role Strain) (Whitlatch, Zarit & Von Eye, 1991). Multi-component interventions had significant effects on caregiver burden, wellbeing and ability/knowledge, but not on caregiver depression or on symptoms of the care recipient (Sorensen, Pinquart & Duberstein, 2002). Supportive interventions reduced caregiver burden and increased ability/knowledge, but had no effect on the other outcome variables. Interventions were generally less effective when the care recipient was suffering from dementia (Sorensen, Pinquart & Duberstein, 2002).

Outcomes of Group Behavioural Management Programmes Behavioural training, when part of a larger programme, can have a significant positive effect on patient behaviour and can delay institutionalization (Teri, 1999). Group behaviour management techniques showed good long-term results. Three months and again at three years after a 14-hour training programme, those in the intervention group were less depressed and had lower burden scores than those in the control group (Hepburn et al., 2001; Ostwald et al., 1999). Anger and depression improved in caregivers immediately and at three months following 16 hours of group CBT based on anger or depression management (Coon et al., 2003). Other trials reported less positive results, with no change in depression, anxiety or burden (Hebert et al., 1994).

Outcomes of Individual Behaviour Management This has shown consistent success when more than six sessions are involved with benefits to caregiver mental health evident both short and long term (Marriott et al., 2000; Mittelman et al., 1995, 2004; Teri et al., 1997). Results from studies are not positive where fewer than six sessions have been used (Buckwalter et al., 1999; Stolley, Reed & Buckwalter, 2002). Livingston found that behavioural management techniques centred on individual patients’ behaviour are generally successful for reducing neuropsychiatric symptoms and this effect may also last for some months (Livingston et al., 2005). Bourgeois et al. trained seven family caregivers to use written cue cards to prevent repetitive questioning from patients (Bourgeois et al., 1997). Results compared with seven matched controls only tracking repetitive behaviour, were favourable, and lasted for

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16 weeks or longer. Caregivers rated this training as very helpful and some were able to extrapolate it to other behaviours that had not originally been targeted.

Outcomes of In-home Services Zarit’s survey of a variety of intervention programmes found that benefits from in-home respite care included improved mood, reduced distress and decreased time spent caring for the patient (Zarit, Gaugler & Jarrott, 1999). Problems with in-home respite care included poorly trained home helpers and different helpers each time (Zarit, Gaugler & Jarrott, 1999). A small study by Vernooij-Dassen showed significantly fewer nursing home or retirement home admissions among a group using in-home services than among a control group (Vernooij-Dassen et al., 1995). Similarly Mohide’s small study also showed fewer nursing home admissions in the treated group, but the numbers were small and the attrition rate high (Mohide et al., 1990).

Outcomes Following the Use of Daycare Facilities Adult daycare provides supervised activities for patients during the day and allows caregivers free time. Patients may attend daycare from one to several days each week, and generally for five to six hours each day. Daycare has not been shown to be effective in delaying nursing home admission (Ballinger, 1984), but has been shown to be effective for three outcomes: caregiver burden, caregiver depression and caregiver wellbeing (Sorensen, Pinquart & Duberstein, 2002). Caregivers generally express satisfaction with adult day-care (Zarit, Gaugler & Jarrott, 1999).

Outcomes of Residential Respite Care Results of studies have been mixed, some studies finding transient reductions in caregiver burden, while others find no change in burden (Brodaty & Gresham, 1992; Burdz, 1990; McNally, Ben-Shlomo & Newman, 1999; Zarit, Gaugler & Jarrott, 1999). Residential respite tends to increase rather than decrease nursing home admissions (Zarit, Gaugler & Jarrott, 1999), perhaps because it is sometimes used by caregivers as a rehearsal for permanent placement (Brodaty & Gresham, 1992). Burdz found overnight respite caused no change in the caregiver and no functional change in the patient, and concluded that respite care is unlikely to prevent nursing home placement, but may prevent the caregiver stress levels from becoming intolerable (Burdz, 1990). Of the 55 caregivers (of care receivers with and without dementia), 81% rated the respite care (which lasted a mean of 15.3 days) as ‘very beneficial’, 69% felt that their own situation was unchanged, 45% felt that the patient’s situation was unchanged and 71% felt that their relationship with the patient remained unchanged. Respite patients showed significant improvements in their reported problems compared to their waiting list counterparts, regardless of diagnosis. Many of the behaviours distressing to the caregivers appeared to be responsive to the care available at the respite facilities. It is not known if these benefits were experienced long-term. Caregivers of dementia patients were more likely to report greater difficulties. McNally confirmed that

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there was little evidence, from 29 studies, that respite intervention has either a consistent or enduring beneficial effect on caregivers’ wellbeing (McNally, Ben-Shlomo & Newman, 1999).

Outcomes of Family Intervention Programmes Family intervention programmes appear acceptable to all involved (Marriott et al., 2000) and can significantly reduce caregiver burden as well as behavioural disturbances in patients (Marriott et al., 2000; Teri, 1999). Family training may be effective in delaying institutionalisation and reducing general behavioural problems, disruptive agitation and depression in patients with dementia (Teri, 1999). A prospective randomized controlled trial of family intervention (Marriott et al., 2000) was carried out successfully in the UK with 42 caregiver/patient dyads. Patients were all diagnosed with Alzheimer’s disease and were living in the community with a caregiver who provided the main support. The family intervention was based on caregiver education, stress management and coping skills training, spread over 14 sessions. All participants were randomly divided into three groups of 14 dyads each, the groups consisting of two control groups and one intervention group. Caregivers were assessed on two health measures. Patients were assessed using measures of cognition, depression, and behavioural disturbance. Caregivers who received family intervention showed significant improvement on measures of distress and depression post treatment and at three-month follow-up compared with the two control groups. No significant difference was found between the two control groups, one of which included a comprehensive and lengthy interview, indicating that interview alone was not therapeutic. Behavioural disturbances in the patients were significantly improved post treatment, but were not sustained at follow-up.

POSITIVE ASPECTS OF CAREGIVING Caregivers may be able to adapt to the stress of caregiving, and caregivers may draw on previously unused strengths and resources (Stephens & Zarit, 1989). Cohen, Colantonio and Vernich (2002) found that over 70% of caregivers reported that they were happy or positive about the caring role (Cohen et al., 1993; Kramer, 2000; Smith, Kokmen & O’Brien, 2000). Positive aspects included companionship, fulfilment, a rewarding feeling and pride in one’s ability to handle problems. Caregivers who reported more positive feelings were less likely to report burden, depression or poor health (Schulz & Beach, 1999), and their care recipients had a decreased risk of institutionalisation (Cohen et al., 1993). This was not however a consistent finding (Pinquart & Sorensen, 2004). Caregivers who cannot identify any positive aspects of caring may be at risk of depression and poor health outcomes as well as earlier institutionalisation of their care recipients (Cohen, Colantonio & Vernich, 2002).

NURSING HOME PLACEMENT Although most families view this as a ‘last resort’ in Western countries, most people with dementia (up to 90% compared with 50% of controls) spend some time in a nursing home

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(Smith, Kokmen & O’Brien, 2000). Decisions regarding nursing home admission are often influenced by cultural and ethnic differences (Yaffe et al., 2002), with some cultures regarding nursing home admission as abandonment of the patient (Lawton et al., 1992; see also Chapter 26, this volume). Families appreciate information on available care and reassurance that placing the patient in care is the best option for all concerned. Institutional placement, when it occurs, changes the nature of the caregiver involvement, but certainly does not end it (Brodaty, 1994; Hagen, 2001; Ryan & Scullion, 2000; see also Chapter 16, this volume). Caregivers have reported that nursing home placement is the most difficult decision that they have ever had to make (Fink & Picot, 1995). Their stress may be exacerbated by nursing home placement (Maas et al., 2004) as caregivers struggle with their changing roles and with guilt, both of which may be worsened by frequent disagreements between caregivers and nursing staff (Jablonski, Reed & Maas, 2005; Ryan & Scullion, 2000; Specht et al., 2000). Attitudes of caregivers to nursing staff may vary between racial groups (Specht et al., 2000). Caregivers perceive the nursing staff as providing technical care and believe that family caregivers should be providing ongoing social and emotional care. Nursing staff tends to perceive this somewhat differently and may see caregivers as interfering in the patients’ care (Ryan & Scullion, 2000). Caregivers do need support through this difficult transition time (Ryan & Scullion, 2000) and some interventions for both staff and caregivers have been shown to decrease difficulties (Maas et al., 2004). A combination of the caregiver support system and the characteristics of the care-recipient is a good indicator of future nursing home placement (Yaffe et al., 2002). Patient characteristics that increase the risk of nursing home placement include receiving formal community services (Jette, Tennstedt & Crawford, 1995), being without a spouse, (Colerick & George, 1986) and having a male caregiver which carried twice the risk of nursing home placement as having a female caregiver (Colerick & George, 1986). Having a co-resident caregiver made nursing home placement 20 times less likely over a one-year period in Bannerjee’s study (Banerjee et al., 2003). Delay or prevention of nursing home admission, often referred to as institutionalisation, is a desired outcome of many interventions. Several caregiver interventions can reduce caregiver psychological morbidity and help people with dementia to stay at home longer (Brodaty, Gresham & Luscombe, 1997; Eloniemi-Sulvaka & Sivenius, 1999; Mittelman et al., 1996b; Riordan & Bennett, 1998). Qualitatively, these four studies that delayed nursing home admission appeared to be characterized by a continuing relationship between helper and caregiver, flexibility of the intervention and a variety of interventions that should meet the varied needs of caregivers (Brodaty, Green & Koschera, 2003).

CONCLUSIONS The role of the caregiver in supporting family members with dementia is vital. While demanding and stressful, the role often delivers satisfaction to caregivers. There are many adverse effects on family caregivers – psychological, physical, social and financial. Interventions can be effective but should be tailored to the needs of the caregiver and those of the patient. Predictors of negative consequences can be identified and it may be more effective to target interventions at vulnerable caregivers. General measures such as increased community awareness of dementia, referrals to Alzheimer’s associations and enhancing

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caregiver knowledge appear useful but proving their effectiveness empirically is even more difficult.

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Challenging behaviour in dementia: a psychosocial approach to intervention Mike Bird Aged Care Evaluation Unit, Southern Area Health Service, New South Wales, Australia

and Esme Moniz-Cook University of Hull, Hull, UK

INTRODUCTION This chapter reviews the evidence and conceptual basis for intervention, draws on the literature and clinical experience to guide the clinician towards asking focused questions and demonstrates how, based on these, an individualized psychosocial approach may work in clinical practice.

The Evidence for Intervention Challenging behaviour in dementia has been referred to as ‘behavioural and psychological symptoms in dementia’ or BPSD (Finkel et al., 1997). Behavioural signs include aggression, wandering, agitation, restlessness, culturally inappropriate behaviour, screaming, hoarding, sexual disinhibition, cursing and shadowing. Psychological symptoms include anxiety, depressive mood, hallucinations and delusions. Behavioural and psychological symptoms in dementia are defined as: ‘Signs and symptoms of disturbed perception, thought content, mood or behaviour that frequently occur in patients with dementia’ (Finkel et al., 1997). Prevalence is estimated at between 29% and 90%, depending on how symptoms are ascertained and thresholds of severity and setting (Brodaty, Draper & Low, 2003). Behavioural and psychological symptoms in dementia have severe consequences, including raised family burden (Donaldson, Tarrier & Burns, 1997), increased likelihood of admission to long-term

Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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care (Gilley et al., 2004), crisis admission to hospital and transfers across care homes (Moniz-Cook, Woods & Gardiner, 2000). A review of the pharmacological literature concluded that antipsychotics had modest efficacy at best and a high risk of serious side effects (Schneider, Pollock & Lyness, 1990). Fifteen years later, Sink, Holden and Yaffe (2005) undertook the same exercise, with the same results. Although old-age psychiatrists still prefer neuroleptics (Greve & O’Connor, 2005) and antipsychotic use is on the increase (Dempsey & Moore, 2005), their use remains hotly debated by psychiatrists (see Ballard & Cream, 2005 versus Shah & Suh, 2005). Guidelines call for nonpharmacological first-line approaches to BPSD (Howard et al., 2001) and systematic reviews of up to 164 studies exist (Ayalon et al., 2006; CohenMansfield, 2001; Landreville et al., 2006; Livingston et al., 2005; Opie, Rosewarne & O’Connor, 1999; Spira & Edlestein, 2006). Most highlight lack of rigour in study design as the reason for the thin evidence base for alternatives to medication, but all remain optimistic about the potential of psychosocial interventions. They conclude that carer education, environmental modification, behavioural interventions, activity programmes, music therapy, light therapy and interventions to meet unmet patient need, all show promise. These reviews have sound methodologies but the only conclusion we can reach to date is that, as for the drugs, there is no ‘magic psychosocial solution’ to BPSD.

Conceptual Background: Addressing Aetiologies Ballard et al. (2001) described the grouping of disparate symptoms comprising BPSD as important to the clinical and research enterprise, suggesting four subcategories (agitation, psychosis, mood disorders and ‘other’). The inherent difficulties in the categorization of BPSD are evident in these authors’ classification where: both ‘agitation’ and ‘mood disorder’ include anxiety; aggression is described as a consequence of agitation, when it can be associated with psychosis and depressed mood (Bassiony et al., 2000); and the widespread problem of ‘noncompliance with self care tasks’ (Beck et al., 1990) or ‘aggressive resistance’ (Hope, et al., 1997), usually a consequence of failed communication between the individual and carer, is unrepresented. In order to target nonpharmacological interventions, there is a case for abandoning conceptualizations of this type in favour of consideration of aetiologies, even for symptoms of psychosis (Cohen-Mansfield, 2003), particularly since case series studies (Bird, Blair & Caldwell, in press; Moniz-Cook, Stokes & Agar, 2003) demonstrate that similar behaviours often have different aetiologies. We can conclude that subgrouping BPSD, including studies deriving groups of symptoms based on the factor analysis of rating scale scores, lacks conceptual or practical validity for treatment. The prevailing one-syndrome-one treatment paradigm (Bird et al., 1998) underpins the motivation to group behaviours and conduct reviews of interventions for syndromes such as agitation or wandering. It presents the person with dementia as the patient and the behaviour as the syndrome to be treated, usually with a standardized pharmacological or psychosocial regimen such as an antipsychotic or ‘behaviour management’. This paradigm has, we contend, weak empirical and theoretical support. We suggest that the reason there is no pharmacological or psychosocial ‘pill’ for BPSD, either as a generic

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syndrome or for individual behaviours, is because the behaviour is the wrong target for treatment. Reasons for this are twofold, both reasons being related to causality. First, although insults to the brain are, by definition, a necessary condition for challenging behaviour associated with dementia, with some behaviour characteristic of certain dementias, for most clinical cases the behaviours observed are the result of (usually) multiple causes (Bird, 2005; Stokes, 2000). Causes for the same behaviour vary widely between individuals (Bird, 2005; MonizCook et al., 2003), or within the same person at different times (Snyder et al., 1978). For example, the aetiology of sleep disturbance or night-wandering may be due to staff noise or staff waking residents up (Schnelle et al., 1999); too much sleep/dozing or inactivity during the day (Ancoli-Israel et al., 1989); being unable to find the toilet or find the way back to a room at night (Ersser et al., 1999); damage to the frontal lobes (Bjorksten, Basun & Wetterberg, 1995); the person’s premorbid night-time regimes (Bird et al., 2002); or any combination of these. It is equally common for a person to present with several different behaviours with the same aetiology. It follows that interventions need to be targeted not at the behaviour but at causal factors in the individual case (Bird et al., 2002; Moniz-Cook & Bird, 2003; Moniz-Cook, Woods & Richards, 2001; Moniz-Cook, Stokes & Agar, 2003). The closest generic models related to the aetiology of disturbed behaviour in dementia are the unmet needs hypothesis (Cohen-Mansfield, 2005), where behaviour is seen as an expression of unmet need, and the progressively lowered stress threshold hypothesis (see Smith et al., 2004), where, with the progression of dementia, the person’s threshold for tolerating stress is seen as being progressively reduced. These are not necessarily mutually exclusive and are a reminder that much disturbed behaviour in dementia is an expression of suffering by people who, because of their illness, have reduced capacity to control their responses or the way these are manifested. However, neither model explains all phenomena encountered. Secondly, these models, and the one-behaviour-syndrome-one-treatment paradigm, ignore the way in which factors other than the behaviour determine whether the behaviour is seen as a problem. For example, wandering may only be a problem where there is no perimeter fence, or when a carer misunderstands the reason for a person’s action. Furthermore, there is evidence that carers differ widely in how they perceive the behaviour. For example, for the Challenging Behaviour Scale, adequate interrater reliability on all indices (i.e. whether the behaviour was present, its frequency or its severity) was only achieved where staff made ratings collaboratively (see Moniz-Cook et al., 2001). Bird et al. (2007), found wide variability in distress amongst care staff exposed to the same behaviour by the same patient and, equally, low agreement amongst senior staff about which of their residents presented with challenging behaviour. The emotional response to patient behaviour is frequently determined not by the behaviour, but by personal attributes such as depression in family carers (de Vugt et al., 2004; Hinchliffe et al., 1995) and organizational or staff variables in care homes (Baillon et al., 1996; Moniz-Cook, Woods & Gardiner, 2000). Though some behaviour almost always causes distress to carers, these data suggest that what is challenging may frequently be in the eye of the beholder. The clinician who ignores the causes of carer distress as a clinical target in its own right is working with a grossly circumscribed repertoire. We therefore define challenging behaviour in dementia as a manifestation of distress or suffering for the person with dementia, or of distress in the carer (adapted from Bird, Hallberg & Norberg, 1998).

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Summary: A Conceptual Basis for Interventions Both the behaviour and the reasons why it is seen as challenging are the product of multiple causality, idiosyncratic to the individual case. Therefore case-specific interventions targeted at the causes of distress are required. The key is multifaceted assessment and, although multidisciplinary involvement is often required, the skills of the clinical psychologist are particularly suitable (Bird, 1999). Assessment of antecedents, behaviour and consequences – the ABC model based on operant conditioning – is often advocated (Peisah & Brodaty, 1994). Although it has its uses in straightforward cases, such simplistic models (for example, as in Spira & Edlestein, 2006) are rarely applicable in clinical settings. First, the critical antecedent event in many cases will be invisible, or occur long before the behaviour (for example, a superstition, a flashback to the war, insensitive morning care causing irritable outbursts later in the day, or escalating discomfort crossing a tolerance threshold). Secondly, in practice, manipulation of consequences is rarely effective in dementia. Third, the ABC model ignores the variable of carer distress, which is an important part of most intervention targets. The closest psychological model, although far from covering all eventualities, is functional analysis, where greater emphasis is placed on the wider context and antecedents (observable or not), the nature of the carer response and the characteristics, experience and meaning, for both carer and person with dementia (Moniz-Cook et al., 2001). Its methodology involves generating hypotheses about the function of the behaviour and the carer response, which may then be subject to trial and error hypothesis testing, by altering the environment. The use of functional analysis (see Stokes, 2000) provides the clinical psychologist with a framework within which to design and apply case-specific interventions. Next we outline a practical guide to the domains requiring assessment and interventions that are often applied, present four case studies to illustrate how functional analysis may be adapted for this population and describe two intervention studies directed by clinical psychologists, from Australia (n = 44) and the UK (n = 99).

ASSESSMENT AND INTERVENTION Introduction If challenging behaviour is the end product of an interaction between many case-specific variables, multidimensional assessment is essential. Therefore, if the intervention package is to target directly the causes of the problem, a toolkit of questions is required, rather than preconceived answers such as behaviour therapy, staff education, or anti-psychotics. Solutions come through questioning those who know the person best: family members and care staff. The latter are often ignored even though they are exposed most often to the behaviour and some will have devised techniques which will form part of the intervention. Progress and doctors’ notes, including medication sheets, will provide important information, illustrating the need for an awareness of disciplines other than psychology. Another essential source is the person with dementia, using direct discussion where possible, focused attention (for example to the content of vocalizations), behavioural observation, and behavioural experiments.

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Table 33.1 Domains of assessment The behaviour

What the person is actually doing, and the effects and context of the behaviour

The person with dementia

Medical and psychosocial characteristics of the person manifesting the behaviour

The care environment/carer characteristics

The way care is carried out and characteristics (for instance, care home routines, skills, knowledge, attitude, emotional state) of those providing it

Physical and sensory environment

The total physical environment, including its impact on the senses.

Note: ‘carer’ refers to both family and care staff.

The purpose of assessment is to determine the nature and causes of the problem and then devise a realistic intervention package which addresses those causes most amenable to change. Multiple causal factors involved in any one case can range from medical problems through to the quality of staff support. For convenience, we have divided the domains to be assessed into four (see Table 33.1).

Domain 1: The Behaviour A thorough assessment, using the focused questions below, will help determine whether intervention is required and, if so, which domains to explore (Table 33.2).

What is the behaviour? The clinician needs to know what the patient is actually doing, avoiding general terms like agitation or even aggression, which can range from swearing at an insensitive carer to dangerous physical attacks.

Is it a manifestation of distress, or does it cause distress or danger to the person with dementia? Consistent with the unmet need hypothesis (Cohen-Mansfield, 2005), many disturbed behaviours are manifestations of distress. Medical assessment may be required but reasonable hypotheses can be formed through observation of facial expressions, body posture, or from what the person is saying. For example, pain is a common cause of distress, as is fear or resentment of physical intrusion during personal care. Sensitive carers can often answer this question. Even if the behaviour is not a manifestation of distress, consequences can cause distress or danger to the person. Examples include wandering near busy roads or entering other people’s rooms and being assaulted; obvious distress after an incident; premature admission to residential care; being evicted from a facility and being restrained or sedated with neuroleptics. If the answer to this question is ‘yes’, the clinician must proceed with assessment and intervention.

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Does the behaviour cause distress or danger to others? If so, who is distressed and how much? Referrals are usually received because the behaviour causes distress or danger to others, though they can also occur for routine phenomena in dementia which are labelled as ‘abnormal’, for example benign hallucinations. Genuine hallucinations, not visual agnosia, may require review for an underlying problem like delirium (Peisah & Brodaty, 1994) but there is little rationale for treatment of a nursing home resident who enjoys talking to her ‘mother’ in the mirror. The clinician should interview carers at the outset to assess their distress, since carers differ profoundly in their views and reactions to behaviour and its challenges. If the behaviour is not a manifestation of distress, does not cause significant distress or danger, or only distresses a minority, it is not a clinical problem. Intervention may simply involve helping particular carers to understand the behaviour in its context, with no further action.

Is there significant risk of harm? If the distress/danger criterion is met, risk assessment follows. Though cases of significant risk of major harm to the patient or others are rare, it may be necessary to ensure safety until the case can be properly assessed. This can include: locking doors; ‘specialling’, through one-to-one care; some degree of sedation or referral to a psychiatric inpatient unit.

When did the behaviour start, or escalate to current levels? Recent abrupt onset or escalation of the behaviour is usually a sign of underlying physical or medical phenomena, but can sometimes be due to recent environmental changes. Events shortly before the escalation or onset are prime suspects, including falls, infections or constipation, changes of medication, or (less often) changes in the care or physical/sensory environment. If there is recent onset or escalation with no obvious psychosocial precipitator, it is essential that physical and medical status, including the medication regime, is investigated by a dementia-literate medical practitioner. Some community mental health teams will not accept a referral before a full physical/medical workup is completed. However failure to treat can lead to severe consequences and, where medical support is variable, it may be necessary for the clinician to work with the care system to ensure that the relevant investigations are completed.

Where or when does the behaviour occur and who is involved? In many texts, the Who-Where-When questions occur at the start of assessment and the traditional A-B-C model is often presented here. Such psychology-centric formulations fail to acknowledge the complexity of this field, where physical, mental, and cognitive health boundaries become increasingly blurred, and where the behaviour and attributes of the person with dementia, and those who provide care, interact. In many cases, it will not be possible to determine a pattern based on obvious external events. Nevertheless,

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understanding the environmental context of the behaviour is important, with the clinician looking for patterns. Short term monitoring sheets can be used, although questioning as many carers as possible can usually provide this information in a much richer context. Key questions include whether the behaviour occurs only at certain times of day; only in particular places or situations; or only with some care staff and not others.

Introduction to the Remaining Domains Assessment of the three remaining domains (Table 33.1) can help determine causality, in order to develop intervention based both on causality and what is feasible in the individual case. Treating causality frequently involves addressing the interaction of several domains. For example, even a single within-patient cause (for example, aggressive resistance to care because of arthritic joint pain) will probably involve not only pain relief, but also the care environment and carer characteristics (for instance, helping staff to empathize and develop skills to minimize pain to the patient when delivering care). Careful assessment and analysis will help to identify, within the three domains, the most likely targets for intervention (Table 33.2).

Domain 2: The Person with Dementia Studies show within-patient correlates of disturbed behaviour, some of which are nonadjustable such as cognitive status (Beck et al., 1998). Here we consider characteristics of the person with dementia, which, though fixed, provide important information; then we examine factors with potential for adjustment.

Who is this person and what capacities and resources are available? A broad history is nearly always required. It is important, not only for the clinician to see beyond the dementia but, in residential care in particular, to help staff perceive patients as more than the sum of their behaviours. Many know little about those they care for and asking nurses themselves to research the backgrounds of difficult residents is a useful intervention (Bird et al., 2007; Edberg, Norberg & Hallberg, 1999). Social and medical background often provides information about the origins of the behaviour and what is possible. If people have done shift work most of their lives, it may be difficult to change circadian rhythms so they sleep at night. In one case, discovering that a resident resisting personal care had suffered in the past from cleanliness-related obsessivecompulsive disorder indicated that the behaviour was unlikely to change, so the intervention was directed at improving staff skills and confidence (Bird, 2005). Learning that a woman who screamed during bathing was manifesting panic based on known premorbid trauma helped staff to change their approach and largely eliminate the behaviour (Woods & Bird, 1998). Discovering that a retired trawler man attacked others due to his belief that wearing green was unlucky helped staff to adjust the social environment and largely resolve the problem (Moniz-Cook, Woods & Richards, 2001). Assessment of retained capacity offers the potential for direct working with the person with dementia, if the person can communicate, retains insight, or has potential for new

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Table 33.2 Suggested domains to target following assessment of behaviour Characteristic of the behaviour

Likely domains

Sudden or recent onset/rapid escalation:

Person with dementia, e.g.: r Physical/medical problems/medication changes/delirium r Recent events impinging on person Care environment, e.g.: r Recent changes to care routine or personnel Physical/sensory environment: r Recent changes in these surroundings

Occurs only in some situations in personal care or when certain limbs touched or in certain body positions

Person with dementia, e.g.: r Physical problems/pain r Modesty/feels as though being assaulted Carer characteristics/care environment, e.g.: r Ignorance of, or insensitivity to, patient’s physical or emotional state, or preferences r Insufficient care taken with painful areas

Occurs with increased severity at certain times of day

Person with dementia, e.g.: r Escalating pain/boredom/tiredness Care environment, e.g.: r Noisy staff handover/abrupt wakening Physical/sensory environment, e.g.: r Busy noisy times, like meals/external noise

Occurs only in certain areas of facility or home

Physical and sensory environment, e.g.: r Noisy areas, glare, confusing areas, too many people

Occurs only with some staff

Carer characteristics/care environment, e.g.: r Carers noisy, confrontational, hurried, rough or otherwise unskilled

Only some staff stressed

Carer characteristics, e.g.: r Those stressed have limited understanding of causes/lack empathy/perceive behaviour as a personal affront r Those stressed do have empathy but are distressed by suffering of person with dementia, or their inability to help

Behaviour appears mild (low frequency/low disruption) but carer distressed

Carer characteristics, e.g.: r Limited knowledge of, or tolerance for, common symptoms of dementia

learning (Bird, 2005). The clinician needs to use empathy and informal cognitive testing as well as, if necessary, neuropsychological testing. Behavioural experiments often provide equally useful information. For example, in the Woods and Bird (1998) case, above, we discovered that this patient could have her hair washed at a salon without panic.

Contributory factors amenable to adjustment The most common adjustable within-patient causal factors relate to medical problems, including pain or discomfort, constipation, drug interactions, and infections (Bird et al.,

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2002; Cohen-Mansfield & Werner, 1999). These phenomena can be frequently missed even by geriatricians (Cohen-Mansfield & Lipson, 2002), so all clinicians must develop diagnostic knowledge. Many patients have ill-fitting clothes, dentures or shoes and, in later stages of dementia, many are in discomfort because they are left in unchanged positions (Beck et al., 1998). (Ingalill Hallberg, in her workshops (personal communication) suggests that if this is suspected, clinicians try assuming the posture and experiencing the discomfort of holding it unchanged for more than 15 minutes. Many patients in residential care are not moved for periods of up to two hours.) Critical to assessment is observation and a history from the family and nursing home notes, which provide clues about sources of pain and discomfort (for example, a propensity to headaches, evidence of long-term back pain, or a hip replacement). Interventions are primarily medical but psychosocial methods are important adjuncts, particularly for pain and discomfort. For example, a case of intrusive wandering precipitated by escalating knee pain was ameliorated both by regular analgesics (instead of offering PRN medication only when the person was clearly in pain) and staff developing ways to induce this somewhat bossy resident to rest in the middle of the day (Bird, 2005). Mental illness can be a causal factor in challenging behaviour. The best data are available on depression, although anxiety disorders, delusions and hallucinations are also implicated (Cohen-Mansfield et al., 1997; Cohen-Mansfield, Taylor & Werner, 1999; Menon et al., 2001). Questions about the person with dementia must therefore include assessment of mental illness whilst taking care not to label as psychosis phenomena that are a direct corollary of cognitive impairment. By providing explanations of ‘hallucinations’ as misidentifications or perceptual problems, and of ‘paranoia’ as suspicion due to memory problems (Burns, Jacoby & Levy, 1990), psychologists can contribute to reducing unnecessary neuroleptic use. For example, a new resident referred for ‘paranoid delusions’ and assaulting staff was helped partly by using a large poster of what had happened to her possessions (Bird, 1998). Having been an organized person prior to onset of dementia, she forgot that she had given everything away and believed that staff had stolen her belongings. This illustrates an important point. Consistent with the unmet need hypothesis, anxiety, fear, despair or frustration lie behind many disturbed behaviours in people, usually with no psychiatric history, who are losing the capacity to make sense of the world, or communicate their needs (Berg et al., 1998; Cohen-Mansfield & Werner, 1997). Overuse of psychiatric templates can be prevented by clinicians spending time, like Tom Kitwood (1997) observing disturbed behaviour and considering the experience of the person manifesting the behaviour. Exploration of the meaning of behaviour (e.g. Cohen Mansfield & Werner, 1997) is rare. In an important Swedish study (Edberg, Hallberg & Gustafson, 1996; Edberg, Norberg & Hallberg., 1996; 1999; Hallberg & Norberg, 1993), a critical component was to change staff practices from task-oriented to person-centred care, by helping them consider what the resident’s life was like, leading to improvements in behaviour and mood. In the case of ‘paranoid delusion’ above, another component involved providing an explanation of why the resident was upset, thus enhancing staff empathy. Mental illness as a causal factor in challenging behaviour should be treated if possible. Psychopharmacological interventions are important, but psychosocial adjuncts can help (Bird et al., 2007). Where longstanding psychotropic use for premorbid psychiatric illness is present, the clinician should avoid overenthusiastic adoption of drug withdrawal interventions, which are otherwise an important intervention in modern dementia care (see Cohen-Mansfield et al., 1999). Where depression is a causal factor, and there is no obvious psychosocial strategy to address the causes, the intervention of choice will be routine

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prescription of antidepressants, working with carers to minimize the risks of side effects such as falls and developing ways of improving quality of life. For anxiety disorders, the long documented anticholinergic effects of benzodiazepines (Svarstad & Mount, 2001) prohibit anxiolytic use but a skilled old-age psychiatrist may trial short-term use of other compounds. In cases of clear psychosis that causes distress, neuroleptics may be considered but only where it is impossible to provide regular reassurance or nonpharmacological support (Cohen-Mansfield, 2003). There is a growing literature on nonpharmacological treatment of affective disorders (almost exclusively depression) in dementia, including various psychotherapies and exercise (Duffy, 2002; Teri et al., 2003), with an embryonic literature on residential care populations (Duffy & Karlin, 2006). Whilst there is rarely opportunity for prolonged talking therapy, possibilities exist for addressing boredom, excessive dozing and depression through goal planning (Proctor et al., 1999), or through daily structured walking and exercise, which can minimize behavioural and night disturbance or dependency (Eggermont & Scherder, 2006). If boredom is a factor, it is essential to work with carers to devise ways to increase activities that give some pleasure and can be realistically maintained after the clinician has withdrawn. Some families can afford to pay to alleviate boredom by, for example, engaging carers to undertake activity or use community services. Many residential care facilities have diversional therapists or activity coordinators but their resources are often limited to group activities. Ingenuity is required, gathering information about past pleasures which can be adapted, looking at the activity literature, and often, engagement of volunteers, family members or local organizations.

Domain 3. Carer Characteristics and Environment The way care is delivered can cause problems, as demonstrated in the cause of night disturbance due to staff waking residents (Schnelle et al., 1999) and staff schedules (CohenMansfield et al., 1992). The care environment is often inseparable from carer characteristics, which determine both the quality of the care, itself related to the development of disturbed behaviour (Hallberg & Norberg, 1993; 1995) and to whether a given carer finds the behaviour ‘challenging’ (Moniz-Cook, Woods & Gardiner, 2000; Moniz-Cook et al., 2001b). For example, whilst physical aggression occurs most commonly in intimate personal care (Bridges-Parlet, Knopman, Thompson, 1994), a smiling, relaxed carer can keep the patient calm and cooperative (Burgener et al., 1992). Furthermore carer distress is often a primary clinical target, or a critical ancillary to dealing with BPSD. Focused assessment should therefore separately address both the care environment or regime and carer characteristics or distress.

Assessing and dealing with causal factors in the care environment A common cause of behaviour that carers find difficult surrounds the previously described association between aggression and bathing, toileting, dressing, getting people ready for bed and feeding (Beck et al., 1990; Bridges-Parlet, Knopman & Thompson, 1994). It is a useful area for the less experienced clinician to start working on because where personal care is a causal factor it is often relatively easy to understand the behaviour and thus reach a solution

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(Moniz-Cook, Stokes & Agar, 2003). Common methods are observation of different staff undertaking the task and sharing information amongst the staff. Alternatively, a skilled clinician (usually a nurse but sometimes a clinical psychologist)1 can attempt the task, to assess the problems. For example, during showering, flinching when certain body parts are handled may suggest pain, or facial expression can represent fear or outrage at what the person perceives as assault or intrusion. In any facility, however impoverished, there is usually at least one staff member who encounters fewer problems than others in providing care and should be seen as the ‘expert’. The difference in the way s/he and others approach the task will often suggest both the causes of the problem and potential solutions. In some cases, trial and error will be required and it helps if there is such an expert within the facility (or an expert on the clinical team) to model the process. Some staff can support certain residents but not others, and sometimes, only a few staff can develop the necessary skills. This is where information about flexibility in rostering is useful. In the case described previously, long term OCD related to cleanliness suggested that violence during showering was unlikely to change. Two ‘experts’ from within the facility demonstrated to demoralized staff how they accomplished showering despite difficulties, and provided encouragement and supervision (Bird, 2005). Support for the facility was provided by the clinician throughout, illustrating the need to deal with the emotional impact of these problems (see case 2, Section 3). Wide-ranging active aspects of the care regime can be causal factors in disturbed behaviour. For example, a patient who was violent at night when woken up for a toilet visit was ‘cured’ by persuading night staff not to wake her up (Bird et al., 2002). Routine practices such as these, or making all residents eat at tables, or with people they may not like, are rarely questioned. Namazi and Johnson (1996) noted that a person’s lifelong preferences, routines and habits regarding bathing rarely accorded with those of the home. If care practices contribute to problems, it is necessary to assess how flexible the system is and what resources are available. Assessment should include questions such as how flexible the rosters are and what financial resources are available for funding extra support during the period of the intervention, such as providing one-to-one input to a patient, or extra equipment. Although there are some facilities where implementing psychosocial interventions is impossible, we have found, over many cases, that attention paid to building rapport with both senior and care staff usually pays off. Next we will consider interventions for carers who are distressed by patient behaviour.

Working with carers and ameliorating carer distress (see also Chapters 32 and 34, this volume) Assessment of carer characteristics includes information on their knowledge of dementia, caring skills, attitude towards people with dementia, knowledge of, attitude to, and level of distress related to the individual patient and level of burnout or motivation to change. Change in care practices can only occur if some of these characteristics are addressed. 1

Clinicians wanting to specialize in challenging behaviour should consider working as a carer in residential facilities. This has the potential to give insight into the culture of residential care and the way facilities operate; enhance dementia-specific skills; provide insight into what it is like to be assaulted by patients; develop respect for staff and their skills and can prevent the clinician from proposing facile solutions, which undermine their potential to engage staff as co-therapists.

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For example, the nature of nurse-patient interactions, itself a product of staff attitudes, is associated with vocal disruption (Edberg, Norberg & Hallberg, 1999), anxiety in home managers is associated with high levels of challenging behaviour (Moniz-Cook, 2001) and the emotional response of carers often determines whether or where intervention is required (Section 2.2). However, even if patient behaviour change is necessary, it will often involve working through family carers or staff as co-therapists (Teri, 1999; Teri, et al., 2005). Therefore addressing carer distress may be necessary before attempting an intervention requiring carer input. For example, it was necessary to work first on the anger of a carer whose confrontational response to her husband’s obsessive toileting was exacerbating the problem (Bird, 2003). Equally, support will be required during an intervention. In a difficult case of violent resistance in personal care (Bird, 2005), before proceeding, good rapport, good staff understanding of the intervention, which sometimes involved leaving the patient soiled for long periods, and frequent encouragement were needed. In this case, the causes of staff distress and therefore part of the clinical target were a sense of hopelessness and lack of support, a strong sense of duty of care untempered by awareness of their rights, lack of knowledge about the resident including her degree of abdominal pain and lack of appreciation about the level of family guilt. Thus, factors unrelated to the behaviour influence whether carers are distressed by it and these can be addressed directly. There is good evidence that carers are amenable to intervention. Depressed family carers, following treatment, no longer reported previously intolerable behaviours as problematic (Hinchliffe et al., 1995); increasing staff empathy and resident-specific skills improved the quality of personal care, thereby reducing difficult behaviour and improving both staff and patient wellbeing (Edberg et al., 1999); and, in 20% of cases, interventions directed at carer distress without addressing patient behaviour were sufficient (Bird et al., 2002). Interventions aimed at carer attitudes or practices require the same rapport as psychotherapy, though in institutions varying levels of skill, insight, flexibility and motivation among staff make the task more complex. Listening to and responding to staff distress appears relatively rare (Edberg et al., in press) but, if carer concerns are not listened to, there can be little opportunity for rapport or compliance. Skilfully applied, what is essentially psychotherapy with the care system becomes a collaborative exercise with those who know the person with dementia. It is an essential skill for clinical psychologists working with this population. Failure to work with the whole care system by, for example, masquerading as an expert, not consulting staff, or writing a functional analysis intervention and leaving it with the Director of Nursing will usually result in a poor clinical outcome. At a research level, controlled clinical intervention studies are rare within the vast home carer burden literature. A few structured support and education programmes have demonstrated clear benefits for carers dealing with challenging behaviour, including more effective management of behaviour problems and concomitant delayed entry into residential care (see Teri, 1999 for a review). In institutions, programmes that have addressed staff attitudes and care practices have not only improved staff morale (Berg, Hannson & Hallberg, 1994) and coping (Moniz-Cook et al., 1998), but have also reduced problem behaviour (Bird et al., 2002; Rovner et al., 1996), patient dependence (Baltes, Neumann & Zank, 1994), patient anxiety and depression (Br˚ane et al., 1989) problems in personal care (Edberg, Hallberg & Gustafson, 1996), use of neuroleptic medication (Fossey et al., 2006) and use of physical restraint (Levine et al., 1995).

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Domain 4. The Physical/sensory Environment Our experience suggests that the physical/medical and the care environment/carer characteristics domains are predominately casual factors. However, physical and sensory phenomena can sometimes be both causal and ameliorating factors in challenging behaviour, usually relating to the presence or absence of stimuli. Assessment may take the form of asking carers to monitor whether the behaviour takes place in specific areas, or relates to increases or decreases in noise or light. Observation and behavioural experiments may help assessment, testing hypotheses with the patient if possible, or by clinicians ‘putting themselves in the patient’s shoes’ and experiencing the environment from the patient’s perspective. Examples of modification of precipitating factors in the environment include reduction of incontinence by visual, auditory or situational cues (Bird, Alexopoulos & Admowicz, 1995), reduction of screaming by room relocation (Meares & Draper, 1999) or relocation from the bathroom to a local salon for hair care (Woods & Bird, 1998), and reduction of self-harm by removal of precipitating cues (Bird et al., 1998). Some interventions in the physical or sensory environment can address causes which fall in other domains, such as deficiencies in the care regime. Examples include ‘white noise’ (waterscape sounds) or social interaction reducing verbal disruption (Burgio et al., 1996; Cohen-Mansfield & Werner, 1997); bright light reducing motor restlessness (Haffmans et al., 2001); music reducing physical aggression (Clark et al., 1998); personalized tapes made by family members reducing agitation (Woods & Ashley, 1995) and cued recall of more adaptive behaviour for a variety of problems (Bird et al., 1995). For further coverage of factors relating to the physical environment, see Day et al. (2000) and Chapter 17, this volume.

FOUR ILLUSTRATIVE CASES These cases demonstrate how, having established the causes and function of the behaviour for both person and carer, interventions addressing relevant domains can be developed. The first case (‘Stefan’) shows a relatively simple intervention alleviating substantial suffering; case 2 (‘Ted’) shows what can go wrong in the absence of consistent follow-up. Cases 1 (‘Stefan’) and 3 (‘Dorothy’), show how different behaviours can share aetiologies. Case 4 (‘Eileen’) describes a patient with multiple behaviours associated with multiple causes, where interventions were required across all domains. Behaviour and staff measures are reported separately, since they came from different studies using slightly different validated scales (Tables 33.3 and 33.4).

Case 1 Stefan, 88 years old, was a nursing home resident who yelled for up to three hours a day. The predominant staff view was that he was a selfish nuisance. He was on substantial doses of antipsychotics and benzodiazepines. Causes of the behaviour lay in Stefan’s traumatic past and in his current physical discomfort, interacting with deficiencies in the care environment:

r He did not know he was calling out, and was apologetic at being a ‘nuisance’, suggesting that staff had conveyed their feelings to him.

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r He was an Auschwitz survivor and use of a German-speaking interpreter showed that he was experiencing flashbacks.

r Staff knew nothing of his past. r Unable to change his position unaided, he was often in discomfort. The intervention involved meeting staff to explain what was happening and why. Thereafter, staff took over, with some younger staff given a short history lesson by others and they devised a regular roster for bed turns. They now responded more quickly and with comfort and reassurance instead of reprimands when Stefan screamed, including attending to his physical comfort. The frequency of screaming declined and both Stefan’s relationship with staff and his skin quality improved. He was taken off all benzodiazepines and most anti-psychotics. Simply helping staff understand the meaning of the behaviour was sufficient to change their attitude and responses, thus improving quality of life for Stefan and themselves.

Case 2 Ted, 83 years old, was in a nursing home, the site of earlier successful interventions. There had been a change of management, causing increased staff turnover. Ted was hitting staff (at baseline 3.25 times a week), a serious problem because he had been a rugby league player and remained strong. Assessment included visiting night staff and interviews with Ted’s daughter. Causal factors were within-patient variables (past and recent history, pain, and dementia diagnosis) interacting mainly with the care environment and staff characteristics:

r Classic features of Lewy body dementia (LBD), including hallucinations, fluctuating r r

r

r

consciousness, and severe neuroleptic response (the reason the behavioural team was called in). Staff (and GP) knew nothing about LBD; they assumed that, because he won the home’s quiz but later was aphasic, he was ‘malingering’. Violence occurred mostly at night, when he tried to climb the cot sides in order to pack and ‘go home to Queensland’. Factors were: – He was put to bed about 7.00 p.m. and most incidents occurred around 3.00 to 4.00 a.m., after a full night’s sleep; – He and his wife had long developed the habit of sitting in bed watching television until the early hours; – When Ted was restless, a male nurse, the usual person assaulted, often entered the bedroom in the dark (to avoid waking others) and tried to restrain him. Others tended to make Ted a cup of tea, or let him get up. Incidents occurred only rarely during personal care in the day, but: – They occurred only when certain of Ted’s limbs were moved without warning him; – From his extended sporting career Ted had osteoarthritis in most joints, but received no pain relief. He had taken anti-inflammatories for years but this was not passed on when he was admitted to the nursing home. Ted’s wife died six months before admission. It was unclear whether he remembered, but he would cry when she was mentioned.

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The intervention was:

r A trial of anti-depressants for grief, but these made him sick, so were withdrawn. r Regular analgesics. r Staff education about LBD and developing a nonconfrontational response when Ted was reacting to hallucinations; for example, picking up potatoes he could often ‘see’ on the floor, to reduce his risk of falling. r A large note on his file from a psychogeriatrician that he should not be given neuroleptics and why. r A plan developed with staff to help Ted stay up until late, involving: – A recliner in a warm corner where he could listen to music through headphones, look at the newspaper, or at videos of his team Brisbane Broncos, thrashing others. – When night staff came on at 9.30 p.m., he was given a cup of tea and ‘tender loving care’ and moved to where they could check on him regularly. The main night registered nurse did her case notes sitting and chatting with him. – When he was sleepy he would be taken to bed, although he often slept through in the recliner. – If he did wake up later, the confrontational male nurse was shown how to reassure him. – A chart of his painful joints was placed in Ted’s file, and staff developed nonpainful ways to bathe him, including talking him through the process. The situation improved substantially, with a reduction in frequency of incidents two months later, despite noncompliance by the male nurse (all assaults were on him). Severity scores were unchanged but staff were more able to cope and stress improved for one of the two we sampled. This case was the last in the study described in Section 4. The team was disbanded after Time 2 and the main clinician (MB) was no longer able to monitor the case. At five-month follow up, the registered nurse who had implemented the strategy had left and it was no longer being applied. Though frequency was still less than baseline, it was now graded as a severe problem and the remaining staff member from the original sample was more stressed (Table 33.3). The psychogeriatrician’s note remained in the file but Ted was given Haloperidol and died a few weeks later. A plausible hypothesis was that the drug was responsible but the situation was severe for staff and the behaviour team was not available. This case illustrates the importance of clinical teams building up close relationships with facilities, monitoring their cases and being available, so that they are the first port of call when things start to go wrong.

Case 3 Dorothy, aged 74, was given notice from a care home where she had shouted, complained about staff competence, attacked them during personal care, resisted food, destroyed her bedroom furniture, been maintained on a floor mattress and resisted treatment for skin ulceration. Problems continued following relocation to another home. Her highly distressed daughter visited daily. Causes of the behaviour lay both in her personal beliefs and current physical discomfort, interacting with deficiencies in the care environment:

r Her belief that only nurses were competent and that staff were not nurses. She repeated this abusively at every opportunity, thus rejecting all staff.

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Table 33.3 Two cases from Bird et al. (2002) Measures

Time 1 – baseline

Case 1 Behaviour frequency1 2.9 hours shouting daily Severity2 (consensus 4 Severe between three staff) Stress3 Staff A 4 Staff B 5 Staff C 5 Coping4 Staff A Staff B Staff C Case 2 Behaviour frequency Severity Observer 1 Observer 2 Stress Staff 1 Staff 2 Coping Staff 1 Staff 2 1 2 3 4

3.25 assaults weekly 2 Moderate 2 Moderate 4 7 NA

T2. 2 month follow-up T3. 5 month follow-up

2.4 hours shouting daily Not measured

0.8 hours shouting daily 2 Moderate

2 4 4 No change Little more able Much more able

2 4 1 NA

1.75 assaults weekly 1 Mild 2 Moderate 5 4 5 A little more able 6 Somewhat more able

2.75 assaults weekly 4 Severe 4 Severe 6 missing NA

Based on direct behaviour monitoring. Senior staff rating on a five point scale 1 ‘no problem to 5 ‘extreme problem’. Care staff on visual analogue scale anchored at 1 ‘relaxed’; 7 ‘very stressed’. Care staff rated only at time 2, from 1 ‘much less able to cope to 7 ‘much more able to cope’.

r Due to her ‘aggressive resistance’, she was attended by three staff, thus exacerbating her tension and precipitating tussles during care provision.

r Staff had no knowledge of her past (a well respected hospital matron) nor that whilst in hospital for medical treatment she was usually compliant.

r She reported that staff had tried to poison her with a drug hidden in a sandwich. Apparently, medication had indeed been given covertly, leading to her food refusal.

r Untreated skin ulceration, soreness and constipation resulted in discomfort. r Her frequent complaint of headache was not ‘attention seeking’ but a lifelong reaction to stress. In the past she used pain relief at least once weekly. The intervention was:

r District nursing attendance for treatment of skin ulceration, which she accepted. r Staff providing pain relief for headaches. r Hands-on modelling of paced personal care provision, with one person attending to her alone and ignoring verbal abuse.

r Engaging in discussion of best nursing practice during care, including verbal reminiscence of her time as ‘matron in charge’. Her daughter also developed with her a collage of work memorabilia, which staff used to engage her in conversation. r Providing opportunity to examine food before eating and agreeing with her a regime which included increased fibre and liquid intake and daily physical activity, to manage constipation.

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Dorothy’s attitude to staff and verbal abuse did not alter but the frequency of staff assault reduced. Her daughter’s guilt and staff distress reduced, allowing maintenance of outcomes at six years. Dorothy now accompanies care staff to her old workplace when they attend with other residents requiring treatment.

Case 4 Eileen, 73 years old, had an MMSE of 15 and was premorbidly ‘kind and caring’. She could be affable and enjoyed talking about her children. She had been admitted to the care home eight months previously, following reports of suspiciousness, accusations, verbal and physical aggression towards her daughter, night agitation and wandering. Night agitation had been unsuccessfully treated with various psychotropics, bright light therapy and, in a research trial, with melatonin. Haloperidol and anxiolytic dosage had now been increased. She:

r was convinced that her family and staff had taken her pension, frequently accusing them by swearing and shouting – confrontations resulting in reduced family visits;

r attacked staff; r attacked other residents by dragging them about (worst during the evenings); r collected items in a large bag including others’ belongings, destroyed furniture and pushed people out of her way, grappling with staff who tried to stop her and hurting residents who were in her way, as she attempted to ‘collect’ furniture (worst during the afternoons); r had angry outbursts, especially at meals, threatening staff who tried to assist her; r was disorientated at night and entered others’ rooms, disrupting their sleep. Causal within-patient variables (habits, neuropsychological damage, pain and fatigue) interacted with the physical environment (noise), the care environment (routines; staff view that she should be admitted to a psychiatric hospital) and staff characteristics (confrontational or hurried). The formulation (below) was used with staff to develop the intervention:

r Money had always been important to Eileen. Her anxiety at not having her handbag precipitated accusations of theft and verbal aggression; she was a ‘home maker’ who liked being busy and enjoyed looking after others, but now executive brain damage resulted in disorganization of her preferred activities (domestic tasks and caring for others). Afternoon and evening deterioration was explained as a consequence of fatigue (the progressively lowered stress threshold hypothesis) resulting in impaired response inhibition associated with executive deficits. Her attempts to ‘feed and bathe others’ or to perform simple occupational activity were also impeded by executive deficits as the day progressed. r Environmental noise contributed to limited food intake due to deficits in divided attention leading to frustration at mealtimes. r Sleep routines (7.30 p.m. was too early), sleep hygiene (pacing, followed by resistance to bedtime) and carer characteristics (following use of the toilet at night – she resisted pads, she dressed for the day and responded aggressively to staff requests to return to bed) exacerbated night-time problems. r Some staff reported nights as a significant problem, since other residents were disturbed; some could settle Eileen at night whereas others were adamant that this was not possible; some staff had not been attacked.

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Table 33.4 Two cases from Moniz-Cook (2001) Measure: CBS Moniz-Cook et al., 2001b1

Time 1 – baseline

T2. 3 month follow-up

T3. 6 month follow-up

Case 3 Incidence2 Frequency3 Severity4 Coping/challenge5

14 53 40 125

11 29 12 29

11 25 12 24

Case 4 Incidence2 Frequency3 Severity4 Coping/challenge5

17 57 51 172

6 21 8 27

6 14 6 15

1 2 3 4 5

Staff report: consensus of home manager, same key worker and care assistant, repeated at all time points. Staff indicate whether the behaviour has been present in the past eight weeks; score 0–25. If present, behaviour is rated 1 (present occasionally – less than once a month) to 4 (present daily); score 0–100. Rated 1(minimal management difficulty) to 4 (severe management difficulty); score 0–100. Calculated as the sum of frequency X severity (coping difficulty); score 0−400; >100 = severe challenges.

r Pharmacological management had not helped staff; many of its hazards (Ballard & Cream, 2005) now contributed to Eileen’s discomfort. The intervention, tested with most staff and adjusted for particular staff, over two weeks, was:

r Assist to find a purse when seen ‘searching’, usually several times during the morning. r Positive scheduling i.e. ‘occupational activity’ with staff during the morning (cleaning, serving tea) and supervised ‘duties’ at evening meals.

r Take meals in bedroom, to limit noise impact. This was closer to her past preference of avoiding mealtime socializing and eating before or after feeding her family.

r Reciprocal inhibition with ‘snoezelen’ and aromatherapy, to allow rest periods, used before she commenced her early afternoon activity (‘mission’).

r Delayed bedtime with a relaxing bath; night toileting regime followed by a sleep hygiene routine (drink and settling down in bed).

r Night rotas altered to allow at least one staff member who could settle her. r Withdraw psychotropic drugs. Outcome in this case was very positive (see Table 33.4), with reduced incidence, frequency and severity of challenging behaviour, with staff better able to manage the difficulties.

TWO INTERVENTION STUDIES Study 1 This study (Bird et al., 2002) was run by a clinical psychologist. A registered nurse experienced in residential care was the main associate clinician, supported by a geriatrician and psychogeriatrician when required. Forty-four consecutive referrals (33 from residential

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care) were assessed and case-managed using the methods described in this chapter (for details of actual interventions see Bird et al., 2002). Seventy seven per cent of interventions (rated by an independent panel) were mainly psychosocial (Bird, 2005). Psychopharmacology was the predominant intervention in 9% of cases. There was a 44% reduction in the average target behaviour frequency. A ‘usual care’ group (n = 22) entirely from residential care, was recruited from an adjoining multidisciplinary service, which included a clinical psychologist. For this control group interventions were the opposite, i.e. predominantly psychopharmacological with only 9% predominantly psychosocial. Two-thirds of both groups were on antipsychotics at baseline, showing previous failures to ‘treat’ the behaviour. During the study the number using anti-psychotics reduced in the intervention group and increased in the control group. No variables connected with the patient, behaviour, or staff predicted the difference in clinical approach and the consequent psychosocial/psychopharmacological balance. There were no differences between groups in standardized behaviour measures, behaviour severity or carer stress and no difference in number of clinical visits. However, the control group had twice the number of psychotropic medication changes, more than twice the number of drug side effects, more cases remained unresolved at five-month follow-up and nearly a quarter spent several weeks in a specialist in-patient unit because of their behaviour. In contrast, all but one person (hospitalized for two days to give staff respite) in the experimental group were treated in situ.

Study 2 This audit study (Moniz-Cook et al., 2001a; Moniz-Cook et al., 2003; Moniz-Cook, 2001, 2003) occurred within a challenging behaviour service for care homes, provided by 1.4 registered nurses supervised by a clinical psychologist, with access to support from old age psychiatrists and geriatricians. Patients were referred by their GP. Medical interventions included psychotropic drug withdrawal (30%); anti-depressants (10%); pain relief (30%); and treatment for medical conditions (17%). Psychosocial support was used in most cases and included: modelling emotion-orientated communication (Finnema et al., 2000) for residents who were looking for ‘home, pensions, children or parents’ (48%); hands-on training in personal care delivery (11%); neuropsychological rehabilitation and reciprocal inhibition (15%) – see Sohlberg and Mateer (2001); identitymaintaining occupation (92%); relaxation (progressive muscular), ‘snoezelen’ and aromatherapy (Baker et al., 1997), massage, bathing, music (4%); walking and exercise (29%); sleep hygiene and toileting routines (38%); staff education on the meaning of behaviour (97%); individualized reminiscence (collage) (15%); leisure outings (4%) and emotional support for staff, primarily for the home manager (38%). Problems were resolved in 89% of cases; in 11% of cases the resident was relocated due to failure to relieve staff distress, usually in homes where the manager, as measured on a mood scale, remained anxious.

CONCLUSIONS This alternative paradigm for the treatment of challenging behaviour in dementia includes a systematic protocol for using focused questions to assess aetiologies in BPSD and

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associated case-specific targeting of pharmacological and psychosocial interventions. Using this approach in two studies of 143 people with challenging behaviour, an important component of psychological intervention addressed family and staff distress. Useful explanatory models for carer education included the unmet need hypothesis, the progressively lowered stress threshold hypothesis and functional analysis. Small challenging behaviour teams of registered nurses, supervised by a clinical psychologist with dedicated support from an old age psychiatrist and physician in geriatric medicine, can provide the infrastructure needed to maintain intervention success through timely carer training and support for carers to collaborate as co-therapists.

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Donaldson, C., Tarrier, N. & Burns, A. (1997) The impact of dementia on caregivers. British Journal of Psychiatry, 170, 62–8. Duffy, M. (2002) Strategies for working with women with dementia, in Psychotherapy and Counselling with Older Women: Cross-cultural, Family, and End of Life Issues (eds F. Trotman & C. Brody). Springer, New York. Duffy, M. & Karlin, B. (2006) Treating depression in long-term care: beyond the medical model, in Geropsychological Interventions in Long-term Care (eds L. Hyer & R. Intrieri). Springer, New York. Edberg, A.-K., Hallberg, I. R. & Gustafson, L. (1996) Effects of clinical supervision on nurse-patient cooperation quality. Clinical Nursing Research, 5, 127–49. Edberg, A. K., Norberg, A. & Hallberg, K. R. (1999) Mood and general behavior of patients with severe dementia during one year of supervised, individualized planned care and systematic clinical supervision. Comparison with a similar control group. Aging and Clinical Experimental Research, 11, 395–403. Edberg, A.-K., Bird, M., Richards, D. et al. (in press) Strain in nursing care of people with dementia: nurses’ experience in Australia, Sweden and United Kingdom. Aging & Mental Health, in press. Eggermont, L. & Scherder, E. (2006) Physical activity in dementia: a review of the literature and implications for psychosocial intervention in primary care. Dementia, 5, 411–28. Ersser, S., Wiles, A., Taylor, H. et al. (1999) The sleep of older people in hospital and nursing homes. Journal of Clinical Nursing, 8, 360–368. Finkel, S., Silva, J.C., Cohen, G. et al. (1997) Behavioral and psychological signs and symptoms of dementia: a consensus statement on current knowledge and implications for research and treatment. International Journal of Geriatric Psychiatry, 12, 1060–1. Finnema, E., Droes, R., Ribbe, M. & VanTilburg, W. (2000) The effects of emotion-oriented approaches in the care for persons suffering from dementia: a review of the literature. International Journal of Geriatric Psychiatry, 15, 141–61. Fossey, J., Ballard, C.G., Juszczak, E. et al. (2006) Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: cluster randomised trial. British Medical Journal, 332, 756–8. Gilley, D.W., Bienias, J.L., Wilson, R.S. et al. (2004) Influence of behavioral symptoms on rates of institutionalization for persons with Azheimer’s Disease. Psychological Medicine, 34, 1129–35. Greve, M. & O’Connor, D. (2005) A survey of Australian and New Zealand old age psychiatrists’ preferred medications to treat behavioural and psychological symptoms of dementia (BPSD) International Psychogeriatrics, 17, 195–205. Haffmans, P.M.J., Sival, R.C., Lucius, S.A.P. et al. (2001) Bright light therapy and melatonin in motor restless behaviour in dementia: A placebo-controlled study. International Journal of Geriatric Psychiatry, 16, 106–10. Hallberg, I. & Norberg, A. (1993) Strain among nurses and their emotional reactions during one year of systematic supervision combined with the implementation of individualized care. Journal of Advanced Nursing, 18, 1860–75. Hallberg, I.R. & Norberg, A. (1995) Nurses’ experiences of strain and their reactions in the care of severely demented patients. International Journal of Geriatric Psychiatry, 10, 757–66. Hinchliffe, A.C., Hyman, I.L., Blizard, B. & Livingston, G. (1995) Behavioural complications of dementia – can they be treated? International Journal of Geriatric Psychiatry, 10, 839–47. Hope, T., Keene, J., Fairburn, C. et al. (1997) Behaviour changes in dementia II: are there behavioural syndromes? International Journal of Geriatric Psychiatry, 12, 1074–8. Howard, R., Ballard, C., O’Brien, J. & Burns, A. (2001) Guidelines for the management of agitation in dementia. International Journal Geriatric Psychiatry, 16, 714–71. Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Oxford University Press, Oxford. Landreville, P., Bedard, A., Verreault, R. et al. (2006) Non-pharmacological intervention for aggressive behaviour in older adults living in long term care facilities. International Psychogeriatrics, 18, 47–74. Levine, J.M., Marchello, V. & Totolos, E. (1995) Progress toward a restraint-free environment in a large academic nursing facility. Journal of the American Geriatrics Society, 43, 914–18.

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Livingston, G., Johnston, K., Paton, J. & Lyketsos, C. (2005) Systematic review of psychological approaches to the management of neuropsychiatric symptoms of dementia. American Journal of Psychiatry, 162, 1996–2021. Meares, S. & Draper, B. (1999) Treatment of vocally disruptive behaviour of multi-factorial aetiology. International Journal of Geriatric Psychiatry, 14, 285–90. Menon, A.S., Gruber-Baldini, A.L., Hebel, J.R. et al. (2001) Relationship between aggressive behaviours and depression among nursing home residents with dementia. International Journal of Geriatric Psychiatry, 16, 139–46. Moniz-Cook, E. (2001) Behavioural Disturbance in Care Homes, unpublisherd PhD, University of Wales (Bangor). Moniz-Cook, E. (2003) Mealtime challenges for people with dementia and staff in care homes – a psychological perspective, in The Food Book (ed. M. Marshall). Hawker, London, pp. 109–13. Moniz-Cook, E., Agar, S., Silver, M. et al. (1998) Can staff training reduce behavioural problems in residential care for the elderly mentally ill? International Journal of Geriatric Psychiatry, 13, 149–58. Moniz-Cook, E. & Bird, M. (2003) Sensory stimulation and dementia: cause of behavioural and psychological symptoms of dementia needs to be established first. British Medical Journal, 326, 661. Moniz-Cook, E., Stokes, G. & Agar, S. (2003) Difficult Behaviour and Dementia in Nursing Homes: Five Cases of Psychosocial Intervention. International Journal of Clinical Psychology & Psychotherapy, 10, 197–208. Moniz-Cook, E., Woods, R. & Gardiner, E. (2000) Staff factors associated with perception of behaviour as ‘challenging’ in residential and nursing homes. Aging and Mental Health, 4, 48–55. Moniz-Cook, E., Woods, R., Gardiner, E. et al. (2001b) The Challenging Behaviour Scales (CBS): Development of a New Scale for Staff Caring for Older People in Residential and Nursing Homes. British Journal of Clinical Psychology, 40, 309–22. Moniz-Cook, E., Woods, R. & Richards, K. (2001a) Functional analysis of challenging behaviour in dementia: the role of superstition. International Journal of Geriatric Psychiatry, 16, 45–56. Namazi, K.H. & Johnson, B.D. (1996) Issues related to behavior and the physical environment: bathing cognitively impaired patients. Geriatric Nursing,17, 234–8. Opie, J., Rosewarne, R. & O’Connor, D.W. (1999) The efficacy of psychosocial approaches to behaviour disorders in dementia: A systematic literature review. Australian and New Zealand Journal of Psychiatry, 33, 789–99. Peisah, C. & Brodaty, H. (1994) Practical guidelines for the treatment of behavioural complications of dementia. The Medical Journal of Australia, 161, 558–64. Proctor, R., Burns, A., Stratton-Powell, H. et al. (1999) Behavioural Management in nursing and residential homes: a randomised controlled trial. The Lancet, 354, 26–9. Rovner, B., Steele, C. & Folstein, M. (1996) A randomized trial of dementia care in nursing homes. Journal of the American Geriatrics Society, 44, 7–13. Schneider, J.F., Pollock, V.E. & Lyness, A. (1990) A meta-analysis of controlled trials of neuroleptic treatment in dementia. Journal of the American Geriatrics Society, 38, 553–63. Schnelle, J.F., Alessi, C.A., Al-Samarrai, N.R. et al. (1999) The nursing home at night: effects of an intervention on noise, light and sleep. Journal of the American Geriatrics Society, 47, 430–4. Shah, A. & Suh, G.H. (2005) A case for judicious use of risperidone and olanzapine in behavioural and psychological symptoms (BPSD) International Psychogeriatrics, 17, 12–22. Sink, K.M., Holden, F.H. & Yaffe, K. (2005) Pharmacological treatment of neuropsychiatric symptoms of dementia: a review of the evidence. Journal of the American Medical Association, 293, 596–608. Smith, M., Gerdner, L., Hall, G. & Buckwalter, K. (2004) History, development, and future of the progressively lowered stress threshold: a conceptual model for dementia care. Journal of the American Geriatrics Society, 52, 1755–60. Snyder, L., Rupprecht, P., Pyrex, J. et al. (1978) Wandering. Gerontologist, 18, 272–80. Sohlberg, M. & Mateer, C. (2001) Cognitive Rehabilitation: An Integrative Neuropsychological Approach. Guilford, New York. Spira, A. & Edelstein, B. (2006) Behavioral interventions for agitation in older adults with dementia: an evaluative review. International Psychogeriatrics, 18, 195–225.

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Stokes, G. (2000) Challenging Behaviour in Dementia: A Person Centred Approach. Winslow Press, Bicester, pp. 135–6 and 142–54. Svarstad, B.L. & Mount, J.K. (2001) Chronic benzodiazepine use in nursing homes: effects of federal guidelines, resident mix, and nurse staffing. Journal of the American Geriatric Society, 49, 1673–8. Teri, L. (1999) Training families to provide care: effects on people with dementia. International Journal of Geriatric Psychiatry, 14, 110–19. Teri, L., Gibbons, L., McCurry, S. et al. (2003) Exercise plus behavioural management in patients with Alzheimer’s diseases: A randomized controlled trial. Journal of the American Medical Association, 290, 2015–22. Teri, L., McCurry, S.M., Logsdon, R. & Gibbons L. (2005) Training community consultants to help family members improve dementia care. Gerontologist, 45, 802–11. Woods, P. & Ashley, J. (1995) Stimulated presence therapy: using selected memories to manage problem behaviors in Alzheimer’s disease patients. Geriatric Nursing, 16, 9–14. Woods, R. & Bird, M. (1998) Non-pharmacological approaches to treatment, in Diagnosis and Management of Dementia: A Manual for Memory Disorders Teams. (eds G. Wilcock, R. Bucks & K. Rockwood). Oxford University Press, Oxford.

34

Interventions at the care team level Dawn Brooker University of Bradford, Bradford, UK

WHY PROVIDE INTERVENTION AT THE CARE TEAM LEVEL? As a specialty, clinical psychologists working with older people have an established practice of intervening at the care team level. These interventions cover staff training, advice giving, consultancy, mentoring, supervision, staff support and service evaluations. These professional activities are not always considered as interventions in their own right. There is much to be gained, however, by viewing them as such and applying the same rigour as in designing an intervention with individual clients. Organizational psychology provides models for why organizations become stuck and unproductive and it also provides strategies for change. The organizational psychology literature is huge and clinical psychologists are not traditionally trained to work from this knowledge base. What clinical psychologists do have, however, is a depth of experience of working with complex cases and the ability to analyse behaviour and motivation. Their expertise in using relationships and group process as a vehicle to achieve change also equips them to work with care teams. The knowledge and skills they possess can be used to engage with organizations in assessing the problem, devising an implementation strategy, achieving change and embedding changed behaviour. Putting clinical psychology skills at the disposal of other professionals was recommended in National UK workforce guidance at least as far back as 1990 (Department of Health, 1990). In contrast to interventions at the level of the individual, however, the published clinical psychology literature on intervening at the care-team level is sparse, and indeed virtually nonexistent outside the fields of older adults, learning disabilities, child services and psychiatric rehabilitation. Most of the publications are descriptive rather than evaluative. The specialities that are represented in this literature are characterized by multidisciplinary teamwork and a relatively low ratio of psychologists to other staff groups. Intervention at the care-team level is often born from the practical considerations of how to work with limited resources rather than drawing on evidence-based practice. Arguably, it is more cost effective to work in this way. If a psychologist only has two sessions per week available to a particular team, then the amount of direct client work that can be done is limited. The Handbook of the Clinical Psychology of Ageing. C 2008 John Wiley & Sons, Ltd Edited by Bob Woods and Linda Clare.

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rationale for care-team interventions by clinical psychologists is often that greater impact can be achieved by improving the skill level in those who have greater direct client contact than we do. Psychological skills are part of everyone’s role in promoting good mental health and wellbeing. Particularly when working with people living in long-term care settings such as care homes, the impact that care staff have on the psychological well-being of their residents far outstrips what can be achieved by a psychologist in the traditional therapy hour. This becomes even more the case where the residents have cognitive impairment. My experience is that working at the care team level has been a necessary adjunct to working with clients at an individual level. I do not see care team interventions as a substitute for working with individual clients. The aim of working at the level of the care team is that they will provide better psychological care to individuals as a result of my intervention. In this chapter I will present some models and guiding principles that can be useful when intervening at the care-team level. I then consider the ways in which the psychologist can assess and design the intervention, reviewing the evidence base for the different types of intervention available. I will refer to the person making the intervention as ‘the psychologist’ but they could often be any professional acting as a change agent intervening at a care team level. I will refer to the organization as ‘the care team’. Again this could be a ward or a care home or a multidisciplinary team (MDT), but similar principles apply to bigger organizations.

GENERAL PRINCIPLES AND MODELS Intervening at the care-team level is not an easy or trivial process. Just because a given outcome looks desirable to the psychologist, this does not necessarily mean that this outcome will be seen as desirable by those in the care team or that the course of action necessary to get there will be obvious. This is really no different to working with individual clients. The psychologist who tells a client with longstanding agoraphobia that she will be fine if she just takes a daily trip to the supermarket should not be surprised when the client does not comply with the suggested treatment. The process of ongoing assessment, understanding the problems from the client’s point of view, building a therapeutic alliance, reframing problems, agreeing treatment goals, reviewing progress and building sustained change, applies equally when working with a care team as it does when working with an individual client. Georgiades and Phillimore (1975) warned us about the ‘myth of the hero innovator’ who believes he can slay the dragon of institutionalization armed only with a set of new techniques. The failure to acknowledge the power of organisational dynamics is a common mistake. When this happens, the net result is that nothing really changes in the institution apart from the ‘hero’ getting badly burnt by the dragon’s fiery breath and becoming burnt out as a result. Resistance to change is highly complex and is influenced by political, organizational, group and personal attributes (Appelbaum & Wohl, 2000; Del Val & Fuentes, 2003). Whitby (2005), in his analysis of inpatient dementia care, draws on social psychology of group behaviour to help us understand why the task of providing psychologically supportive care in this environment is so elusive. He specifically considers the propensity for groups of people such as care teams to conform to group opinion, to obey authority and to display

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‘outgroup’ prejudice. Including users in the change process is a particular challenge in services for older people. Dewing and Pritchard (2004) highlight the particular beliefs that act as a barrier to change and that maintain the outgroup prejudice. When these psychosocial dynamics are played out, the predicted result is that service users are seen by the care team as being intrinsically different to themselves and thus dehumanizing treatment becomes an acceptable way of treating service users. New staff conform to the prevailing norms within the group and adopt the same type of behaviour. Any challenge to the authority that seemingly condones this type of behaviour becomes increasingly difficult. It is easier to conform or leave rather than to challenge. This pattern of behaviour has resonance for many of us who have worked in long-term care settings. It helps to explain why the ‘malignant social psychology’ described by Kitwood (1997) is so difficult to eradicate. All the major therapeutic models of working with individual clients can be applied at the care-team level. Organizational behaviour management (Frederiksen, 1982) is a well established means of applying behavioural principles to managing the behaviour of individuals and groups within organizations. Elements include setting clear goals and criteria for performance, providing feedback on performance and reinforcing positive performance against specified goals. Milne (1988) described this process in managing standards of care in a psychiatric day hospital. Behavioural principles are well known to clinical psychologists, many of whom have considerable expertise at working with this model. These principles are also embedded in total quality management (TQM) strategies (Moran & Avergun, 1997; Sluyter & Mukherjee, 1993). The features of TQM include empowering frontline workers, collecting data about activity and setting in motion a continuous quality improvement cycle. Ellis and Whittington (1993) describe the essential parameters of quality assurance as having a vision of excellence, setting specific and explicit goals, having reliable and valid tools for measuring quality, adopting a cycle of setting standards and reviewing practice and building an organizational commitment towards excellence. These processes have resonance with cognitive-behavioural models. They draw on theories of how we change beliefs (for example, helping an organization adopt an internalized schema of how it might be in the future; challenging beliefs about helplessness, attribution and responsibility) as well as conducting behavioural experiments directed at producing change and providing ongoing feedback to maintain behaviour change. Systemic psychology models (Jeffery, 1986) provide a useful framework for understanding patterns of behaviour within-care organizations (see Chapter 29, this volume, for a fuller discussion of systemic approaches). Individuals working in health and social care teams work within an interactive system that is governed by many explicit and implicit rules. Within the system there will also be formal and informal hierarchies and groups of staff. The formal rules and hierarchies that influence the organization are fairly easy for an outsider to understand. These will appear in policy and procedure documents and organizational flow charts. It is the implicit rules, that everyone working within the organization knows but that are never voiced, that trip up the unwitting psychologist. Examples of an unwritten rule might be ‘Although residents can get up whenever they like, we all know they have to be dressed by 9 a.m.’ Or ‘Never say that you enjoy spending time with residents or people will think you’re crazy.’ Or ‘Don’t ever criticize the management or you won’t get the shifts you ask for.’ Informal hierarchies can be just as tricky. Finding out where the real power base or power bases exist can take a long time. An example of this might be the healthcare assistant who

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has worked on a ward for 20 years and is a good friend of the chief executive. She may be the person who has to approve any change in practice in reality. Understanding the informal rules and hierarchies can help the psychologist decide how to intervene. Kets de Vries (2004) explores some of the unconscious dynamics that can have an impact on organizational life and that can significantly undermine efforts to work to bring about positive change in organizations that are stuck. Intrapsychic and interpersonal conflicts, defensive behaviours and anxieties are to be found in abundance in most organizations. Psychologists are very aware that people do not always behave in rational ways. People working in staff teams are no exception. Indeed, when demands on people are greatest it is predicted that they will act at their least rational. Not all team members react to change and challenge in the same way. Their unique history as individuals and the dynamic relationships will shape their present reactions. These will not be visible at the outset of the intervention. Finally, if we are promoting humanistic psychological care for older people then there is a case to be made for psychologists to model this in their own interactions with staff teams and other professionals. If we want to promote a person-centred approach with service users then this needs to be paralleled in our relationships with care teams. As in person-centred counselling, the change process will be embedded in the relationship that is developed between the psychologist and the care team. The importance of seeing the care team as being the expert on themselves, and the therapist being a facilitator in the team’s search for self actualisation, adopting a nonjudgemental stance and one that encompasses unconditional positive regard, has particular resonance when our aim is to improve the overall quality of person-centred care (Morton, 1999). The VIPS definition of person-centred care (Brooker, 2004) can equally be applied to care teams and individual clients. Interventions should value and honour all people, appreciate the individuality and uniqueness of team members, start from their perspective and provide a psychologically supportive environment in which to work. Positive person work and the eradication of malignant social psychology (Brooker, 2007; Kitwood, 1997) is familiar territory to many psychologists working with older people. It has resonance with person-centred counselling approaches. Developing relationships based on positive person work will mean that positive change is more likely to occur than if the psychologist/care team relationship is based on power and mistrust.

ASSESSMENT AND FORMULATION Psychologists have a great many skills in this area that can be applied to understanding what is going on in a care team. Some writers suggest doing this in a formal structured manner (Hill-Tout & Heyes, 2001), having the key individuals in the team complete questionnaires regarding skills of individual team members, the history of the team and its team life events and the factors that shape and maintain the behaviour of the team. This has the advantage of being clear with the organization what the psychologist’s expectations are and sets up a clear contract for working at an organizational level. The level of formality of the assessment process often depends on how the contact was established in the first place. If the care team is employed in the same organization as the psychologist such as a ward within the employing Trust then the relationship will be very

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different from a care home which has invited a psychologist to act as an outside consultant. Often, the assessment is done informally through visits with the team, listening to what they say about themselves, observing how individuals interact with each other, exploring their history as a team and by listening to the opinions of those who know the team. In any case, during this time the psychologist is trying to establish the following:

r What has triggered the need for a change in practice? Is the trigger internal or external to r

r

r

r

r r

the care team? A change that is triggered because of a public enquiry is likely to require a different intervention to a change generated internally from a wish to improve services. What is the history of the organization with regard to the general area of change that is being proposed? For example, if the request is for training, what have they had in the past and how was it received? How much have they managed to put into practice? If it is about implementing person-centred care, where are they on the old-culture – new culture continuum (Brooker, 2003, 2007)? If it is about advice for helping a disturbed service user, do the staff have the relevant skills to take this on? Hill-Tout and Heyes (2001) suggest that team life events can be important to take into account so that the psychologist can understand how these might influence their perceptions of the current situation. What are the care team group norms? These are the rules or standards of behaviour that are collectively shared and give the care team its identity. How do the group norms fit with the change that is being proposed? How cohesive is the care team? Will the proposed changes help the team to become more cohesive or will it expose divisions further? What are the obstacles to this change occurring? What is the likely resistance to this change? Are there implicit rules and hierarchies that might impede change? How well resourced is the team? What are the skills of the team? What is the stability of the team like? Is staff turnover an issue? What is it that maintains the current behaviour? What is the leadership quality? Lasting change is almost impossible to achieve unless the leader within the team is signed up to it. Organisations tend to reflect the personalities of their leaders (Kets de Vries, 2004). What do we know about the leadership history within this organization? What are the strengths of the team in terms of this change occurring? What are the drivers for change? Who wants the change? What skills do they have that will be utilised? How empowered is the team in regards to the proposed change? What is a realistic goal for this team? What do the steps for reaching this goal look like? What sort of timescale is change achievable in?

It is impossible to be prescriptive about the formulation stage. Successful change depends upon motivation (Steers et al., 2004). The information gathered during the assessment needs to be logically and systematically considered. This will enable the psychologist to make some predictions about various intervention strategies. This is best done with another psychologist or experienced colleague, ideally as part of a supervision session. It is important to remember that the psychologist is part of the system and will have blind spots within the formulation that another may be able to help him/her to see. In preparing the formulation, it can be helpful to do a guided fantasy exercise in supervision in which you imagine the organization as an individual client. Ask the ‘client’ the sorts of questions that you might cover in an initial therapy session and imagine the answers that it might come up with. Working in this way might help you to get in touch with some of

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Table 34.1 An example of a guided fantasy exercise to use in supervision to help formulate an effective intervention The question to explore

Imagined answer

Evidence

What is it that’s worrying you?

‘I’m the only Older Adults ward in the Trust. I’m lonely, unattractive and unloved. Everyone who meets me gets tired and bored. I work really hard but never feel like I get anywhere. It’s not fair.’

This was the only NHS facility that catered for older people with mental health problems. The Trust’s focus was on working-age adults and contained many more glamorous regional specialities. The day-to-day work was physically and mentally demanding but the staff received no positive reinforcements for what they achieved.

How long has this been going on for?

‘A long time now. Things weren’t so bad when I was younger. Occasionally I meet someone new and exciting but they either get bored and move on or they lose their sparkle’

The ward had no one to champion it for many years. When the ward had been commissioned about 10 years earlier it had had a particularly enthusiastic sister in charge. After she left after a period of illness (she subsequently died) morale steadily declined. Other individual staff members had revived enthusiasm but this was usually short lived and they left. A number of skilled nurses worked on the ward but they were now showing signs of professional burnout.

What makes it difficult for you to change?

‘I think people see me as a bit of a scapegoat. I get blamed for everything. The more they blame me and punish me the weaker I feel. There doesn’t seem any point in trying to change.’

Because of the low status, the ward had been used within the hospital as the place where ‘difficult’ staff were sent. These staff were often considered too much of a liability to be kept in post on the other wards. Many staff in the hospital viewed it as ‘the punishment ward’. Likewise there were a number of patients on the ward whose notes even bore witness to the fact that they had been sent to this ward ‘to teach them a lesson’.

So why do you want to change now?

‘My new consultant psychiatrist says that I am not good enough! I’d like you to help – maybe . . .’

The new consultant was a new champion but in the eyes of many on the ward she was viewed with suspicion. Many of her new ideas were treated with hostility. As a psychologist attached to the ward, I had been appointed three months after the new psychiatrist. Although I was also treated with suspicion, I had worked on the ward in the past as a nursing assistant. This gave me a road in.

the less obvious things about the organization. By way of illustration, I include an exercise (Table 34.1) that I did with a ward that I worked with in implementing staff training and an ongoing quality improvement cycle (Brooker, 1994; Brooker and Dinshaw, 1998). The aim of the change was to move a ward that was a stagnant backwater into one that offered a therapeutic treatment milieu for older people with a wide range of mental health problems.

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Table 34.2 Levels of motivation within the ward team Level of motivation to achieve change

Stakeholders and team members

MAKE

New consultant psychiatrist – this ward was the only inpatient beds she had available to her. Newly appointed clinical psychologist (me) – wanting to prove my usefulness to some of the ward team and the consultant and nursing management.

HELP

Nurse management who wanted to be seen to be doing all they could to help the new consultant. Their help was critical as the leadership on the ward was not on board with the changes proposed. A couple of qualified nurses on the ward who had tried to implement change in the past but who felt unsupported.

LET

Clinical assistant who provided medical cover on the ward felt ambivalent about changes but wanted to continue working with the new consultant. Some ward staff – including one of the charge nurses who had lost the will to fight anything. Head occupational therapist who had withdrawn her staff previously because of negative working environment

BLOCK

Some ward staff including one of the charge nurses. These staff were so disillusioned by newcomers that they could only engage in a way that absented themselves or by hostility.

Another tool to predict the probability of change is to assess the key players and what you perceive their position will be in bringing this change about. The positions can be divided into four levels of motivation as illustrated in Table 34.2. Those who want to ‘make’ change happen have a heavy investment in the success of the proposed intervention. These are the champions. Those in the ‘help’ category will lend their support in time and ideas and resources. Those in the ‘let’ category will not stand in the way of the change but will do very little active to help. Those in the ‘block’ category have an investment in seeing the change not happen and will actively resist the change. In the situation with the ward I presented in the previous table, I assessed the levels of motivation in within the team to be as in Table 34.2. This analysis provided evidence that the proposed intervention could be a success. Although the direct leadership on the ward was not supportive, there were some very powerful figures who wanted the situation to change. The intervention was not without its pain and struggles but it undoubtedly brought about a major positive change for service users in the longer term (Brooker & Dinshaw, 1998).

BUILDING AN APPETITE FOR INTERVENTION At the end of the assessment process, the psychologist may decide that the original plans for intervention are not going to work. This may particularly be the case if the levels of motivation for change within the team are weak. If the only person identified in the ‘make’

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and ‘help’ rows are yourself and another fairly powerless player then a major intervention is inadvisable. A better strategy might be to work on increasing the motivation of those players in the ‘let’ and ‘block’ categories. Again, building an appetite for change is something that psychologists are used to doing on an individual level. It is pre-therapy work. The first thing to understand is what the resistance is about. Sometimes it is necessary to work with key individuals directly. Some more general strategies to use here might be:

r Use the language and metaphors of your client. Sometimes lack of motivation may reflect

r

r

r

r

the fact that the benefits of an intervention are not couched in terms that have currency in the language or culture of those with the power to make things happen. For example, if cost-effectiveness is a motivator, describing the outcomes in terms of market-edge and reduced staff turn-over can win some people over. Education. Sometimes resistance is to do with ignorance or misperceptions. Ensuring that the care team and other key players understand the evidence base or efficacy of the new idea can be enough to shift motivation. This can be done through a variety of ways from holding seminars to circulating papers and articles. Examples of success. Encouraging visits to other places that have achieved something similar can help. Better still, having a champion from another project come and talk about what they have achieved can help people see the possibilities in their own organization. Getting someone from outside the organization, even if they are saying the same things as the team psychologist, will often have more of an impact. This effect is often magnified still further if the outside expert is from another country. Work with the resistance. If part of the resistance includes phrases like ‘It’ll never work here because (a) ‘our clients are too far gone’ or (b) ‘we haven’t got enough staff’ or (c) ‘we’ve undergone too many changes recently’ then it is important not to get into a ‘yes, but . . .’ discussion on repeated occasions. If you do this it will only entrench the resistance. Respect and validate what people are saying whilst continuing to offer the possibility of change. Assisted risk taking. When in doubt suggest a pilot project in an area where success is likely to have an impact. A pilot project is good for assessing increased workloads that may be concerning people about particular interventions. Trainee and student projects can provide a good vehicle for such projects. The other way of assisting risk taking is by obtaining extra funding to pump-start a project or to run a pilot. This can help if key stake holders are worried about costs and lack of resources. Short-term funding for interventions comes in many guises. Having funding for a project also increases motivation to make a success of it because it means a report will have to be written on it and its success evaluated.

TYPES OF INTERVENTIONS The choice of intervention may be determined by the request from the staff team or it may be something that the psychologist offers. Interventions at a care-team level will often involve a combination of components over time, such as a training workshop followed by some supervision and consultancy. The evidence base and pointers for good practice are considered for the most common interventions.

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Training Improving the skills and knowledge of those involved in the care of older people by providing training is something that clinical psychologists are often asked to do. When care teams or individuals are feeling overwhelmed by a problem then a training course is something that is often asked for, even if staff already possess the pre-requisite knowledge and skills. For the psychologist, educating others in psychological expertise is intuitively appealing and is a high-status activity. There is evidence from a small number of studies that short focused training courses (two to five days) given by professional psychologists increases care teams’ confidence and knowledge in working with older people (Lintern, Woods & Phair, 2000a; Mayall, Oathamshaw & Pusey, 2004; Moniz-Cook et al., 1998; see also Chapter 17, this volume). Although all these studies showed a positive impact on staff knowledge, none of them managed to demonstrate a significant impact on the clients that the staff were caring for in terms of disturbed behaviour (Moniz-Cook et al., 1998) detection of depression (Mayall et al., 2004) or observed levels of well-being (Lintern, Woods & Phair, 2000a). This pattern is not just limited to work with older people. Research in the fields of child psychology (Embregts, 2002) and psychiatric rehabilitation (Corrigan & McKracken, 1995) shows similar findings, with training improving knowledge and attitudes but the impact being difficult to demonstrate in practice with clients. This may, in part, be due to the fact that the staff who most need the training are the least likely to attend training sessions. Those who have the most client contact have the least chance of receiving training (Hyer & Ragan, 2002). Secondly, evaluating specific impacts on the life of service users, when intervening at the care team level, is fraught with methodological difficulties. There is a multiplicity of confounding variables that will impact on group outcomes. This, coupled with small sample size and the insensitivity of measures make it very difficult to evidence positive group outcome at the service-user level. A notable exception to this pattern from the learning disabilities field was reported by Singh et al. (2004). This training input, however, provided individualized training in mindfulness methods for three individual key workers of three adults with profound multiple disabilities. The impact of the training was assessed by evaluating the individualised signs of happiness displayed by individuals who were being cared for by staff who had undergone the mindfulness training compared with staff who had received a control training programme. The study indicated that greater signs of happiness were displayed during leisure activities with the key workers who had undertaken mindfulness training up to 17 weeks after the end of the training. This study differed from others in the literature in that it was focussed on a small number of individuals and specific clients rather than assessing the impact on a group of clients. Does this general lack of evidence regarding service user impact mean that psychologists should abandon group staff training sessions? The fact that training increases feelings of care team confidence and competency should not be underestimated. Training in appropriate skills and knowledge is an important ingredient for any health and social care organisation. It should be seen as one ingredient, however, and not the whole recipe when planning an intervention. There is some evidence that, when used in combination with other interventions, staff training can have a positive impact on service users. In a follow-up study to the one outlined above, Lintern, Woods and Phair (2000b) demonstrated that an increase in

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wellbeing for residents was established at a significant level when DCM results were used to drive forward changes in individual care plans and management practice. There are a number of other positive benefits to team training, however, over and above the imparting of knowledge. Running interactive training workshops with a staff team that regularly works together can be an effective means of meeting a number of important goals. It can establish a relationship and a working partnership between the psychologist and the team. Plenty of time for interaction and sharing of stories of experiences between the trainer and the trainees will be much more effective than a two-hour lecture if this is the aim. It can also be a useful vehicle to assess team knowledge and team dynamics. If I have been asked to help a team work more effectively with people with dementia in long-term care, I usually run a short training session that commences by asking participants for their thoughts on the following question: ‘A person with dementia recently admitted to a residential care home is acting in a distressed way – shouting and threatening those around him – what might be any underlying reason for this behaviour?’ The way in which the team responds helps with the assessment of its current skills and knowledge. Does the team focus primarily on physical or psychological causes? Does it have a narrow or broad perspective of a bio-psycho-social model of functioning in dementia? It also provides a good opportunity to look at the dynamics in a staff team. Who are the leaders and the followers? What are the prevailing attitudes? How are people with dementia labelled and described? What troubles the team? Are there particular behaviours that they find distressing? A good workshop will engender confidence in the leader, which can be a good start to building a trusting relationship. This is true as long as the workshop leader has credibility and relevant expertise. If the psychologist does not have a sufficient knowledge base to lead an interactive workshop then it is advisable not to do it. Staff teams remember poor trainers and are unlikely to trust poor trainers to lead them in other interventions in the future. A good interactive workshop can also be a means of team building. Frequently, a training session might be the only time a substantial number of a staff team come together to address issues of practice. The facilitation of a team problem-solving session in the context of a training workshop can help to promote team cohesion and ownership of changed practice.

Consultancy, Advice, Mentoring and Supervision Providing individual case supervision or team supervision is another means of working through other professionals to improve psychological practice. In the older adults field, psychologists most often provide input to teams to help them work more effectively with people with disturbed behaviour. The evidence base and intervention strategies for this are covered in depth in Chapter 33, this volume. There is some evidence from the older adults field that the role of a mentor is valued and useful. Mentors are identified as role models who take a special interest in your work and well-being. Sanchez and Ferrari (2005) surveyed 104 employees of a nursing home comparing care staff who identified themselves as having a ‘mentor’ – someone who provided them with support and guidance – with staff who reported no such relationship. Those who identified themselves as having a mentor reported less caregiver stress, but not greater caregiving satisfaction. A small number of studies show positive effects of psychologists adopting these roles. Freir and Sutton (2003) report an evaluation of a child clinical psychology consultancy

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service provided for one session per month to a school. This intervention was highly valued by the school staff and dramatically decreased the number of direct referrals for one-to one work during the six-month evaluation. Deys, Dowling and Golding (1989) describe a consultancy scheme offered to general practitioners by a clinical psychology service based on a systemic therapy model, describing benefits for both the psychology service and primary care practice. Singh et al. (2002) implemented a mindfulness-based mentoring model with the aim of integrating behavioural and psychopharmacological treatments for teams providing care for individuals with a dual diagnosis of developmental disabilities and psychiatric disorders. Following baseline measure, training was provided in mentoring and mindfulness. Treatment planning meetings were mentored for a number of months afterwards. The results were positive with teams demonstrating more integrated treatment planning during the mentoring phase. This was maintained at six-month follow-up. Investing time in this sort of intervention does not always bear fruit. Richards, Bidder and Gardner (1992) describe such a training and supervision intervention applied to sleep clinics for parents and children. Ten clinics were set up, run by health visitors who had been trained in sleep management techniques by clinical psychology staff and then supervised for a period of two years. At the end of two years only one clinic was still operational due to poor attendance and lack of referrals. This may have been because the clinic model of working did not fit well with the health visitor role, or because insufficient training was provided to apply behavioural techniques in complex situations, or because of the role of socio-economic factors in sleep problems. Whether this could have been foreseen by conducting a more thorough assessment beforehand is not clear. There is an increasing knowledge base for good practice in clinical supervision and the core competencies (Falender et al., 2004; Milne & James, 2002) that the psychologist can draw on when doing this sort of work are increasingly being identified. Clinical supervision is also well developed within clinical psychology compared to other healthcare professions and the psychologist will have often accrued a long personal experience of supervision before being invited to or offering to undertake this work with other professional groups. Supervising individuals or teams from different professional backgrounds is not always straightforward. Special attention often needs to be paid to the supervision contract, with feedback being sought regularly on the feedback process. Other professions may carry some strong implicit rules about safety in supervision. Common ones are: ‘it is shameful to say that I am having emotional problems with a particular client’ and ‘a psychologist can’t understand what it’s like to do my job.’ Consultancy work with a staff team can often take place over a period of years and may change in nature over that time. Huffington (1999) describes a case study of a consultancy relationship between herself and an adolescent unit over a four-year period using a psychoanalytic, systemic and group-relations model. Her reflections on her own role and feelings in relation to this have resonance with the experience of many psychologists working with care teams that are stuck.

Staff Support Occasionally, clinical psychologists working with older people are invited to provide staff support to teams who are either doing particularly stressful jobs or working with clients who

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provoke strong emotional reactions. There appear to be very few written accounts of this type of work, although the general literature on staff support is a useful guide. Roberts (2000) describes a proactive staff support service within an NHS Trust run by a clinical psychology service. The service offered individual and team support and fed back the general causes of stress to senior managers. Uptake of the service was very high, with over 30% of the workforce taking up self-referral in the first two-and-a-half years. The service was valued highly and shown to be cost-effective in returning people to work. A similar staff support service is described by Brownridge (2001). Both these authors emphasize the absolute necessity of building trust and maintaining confidentiality. In my experience of working on small-scale staff support initiatives where people are feeling particularly vulnerable about their ability to cope, confidentiality and trust has been central to an effective intervention. It is also important, however, if psychologists are engaging in this sort of work that they have their own supervision. Terry (1994) describes the growing dissatisfaction he felt in running six staff support groups within a long-stay hospital for older people, reflecting on how difficult it was for him and for the staff to engage on an emotional level with the patients they cared for. He describes his decision to facilitate a number of counselling groups in which both staff and patients participated. These took a long period to establish. He describes the process of the intervention with painful clarity, reflecting on his own helplessness and loss and the parallel experience of the care teams and their patients.

Service Evaluation, Developmental Evaluations and Quality Improvement Cycles The basic purpose of service evaluation is to use practice-based evidence to make improvements to services. If this evidence is gathered on a regular basis over time and used by the care team continuously to maintain or improve practice it can be considered as a quality improvement cycle or a developmental evaluation. Ongoing monitoring and feedback is essential both to maintain the focus on an area of practice development and to evaluate the development in practice. One common approach to continuous quality improvement, promoted by the UK’s NHS Modernization Agency and the Institute for Health Care Improvement in the US, is the Plan, Do, See, Act (PDSA) cycle. Clinical psychologists have a long history of being involved in the evaluation of service quality in the field of work with older people, including helping to look at the experience of clients in long-term care and helping staff teams reflect on their practice (Blunden & Kushlick, 1975). In 1994, Turpin elicited a series of handy hints about undertaking service evaluations which are still very relevant over 10 years later. This paper put particular emphasis on the following: the need to work collaboratively, having a clear project plan, providing regular reinforcement by using multiple measures at regular intervals, keeping the data collection and processing manageable, having clarity about confidentiality of reports and finally ensuring clarity about service user and staff consent. The intervention that followed on from the assessments described in Tables 34.1 and 34.2 was a six-year cycle of using observation of patient engagement and interviews with service users and staff as part of a quality improvement cycle for standards of care in NHS wards for older people (Brooker & Dinshaw, 1998). The intervention was a success in

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terms of achieving its initial aims after one year and continued to build on its successes over a five-year period. Four main factors were identified in promoting the success of this developmental evaluation: an in depth knowledge of the organization, including the direct care teams at every possible opportunity, the importance of regular and repeated feedback, and strong leadership and credibility for the intervention. Within the field of work with older people, dementia care mapping (DCM) (Bradford Dementia Group, 2005; Kitwood, 1992) is a developmental evaluation that many clinical psychologists have been involved with over the years. DCM was developed by the late Tom Kitwood as a means of improving the quality of person-centred care through developmental evaluations in formal care settings for people with dementia. There is now a sizeable literature on DCM to draw on for work in this area (Brooker, 2005; Brooker, Edwards & Benson, 2004). As a care team intervention, used within an organizational framework that supports person-centred care, DCM results in improved levels of wellbeing, increases the diversity of occupation and decreases the incidence of malignant social psychology. Published developmental evaluations supports this assertion both for larger scale quality improvement cycles (Brooker et al., 1998, Martin & Younger, 2001) and more in-depth developments in single establishments (Lintern, Woods & Phair, 2000b; Martin & Younger, 2000; Wylie, Madjar & Walton, 2002). DCM is a powerful intervention. Increasingly over the years there has been recognition that it has to be used carefully. It has a powerful emotional impact on individuals within care teams and the process by which it is used demands as much management and care as the structure of the evaluations (Bolton et al., 2000; Neel, 2002). Dementia care mapping is also a complex intervention and careful attention needs to be paid to practice to ensure its reliability and validity (Fossey, Lee & Ballard, 2002; Thornton et al., 2004). Dementia care mapping has recently undergone a major revision and these issues are covered more systematically now as part of the supporting literature and practice in DCM (Brooker & Surr, 2005). The increasing recognition that the voice of the service user – particularly the service user with dementia – needs to be heard directly in shaping and developing services has drawn many champions from clinical psychology (Allan, 2001; Clare & Cox, 2003). Whitby (2005) describes the importance of closing the ‘empathy gap’ between patients and staff teams. Service evaluations by clinical psychologists often have the aim of closing this empathy gap by ensuring that the standpoint and experience of the service user is central to the process. Service evaluations that help care teams put themselves in the world of the cared for person help to erode the ‘outgroup’ prejudice of institutional care and reinforce positive care practice.

ENSURING YOUR INTERVENTION STAYS ON TRACK Many staff team interventions are long term. There is very rarely a quick fix that actually fixes anything in this area of work. Just as with working long-term with a complex client, it is important that the psychologist keeps an eye on the ball. Motivations and commitments change over time. What might have been appropriate two years ago is unlikely to be the same now. From experience, some of the following can help the care team intervention remain on target:

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r Supervision and support for the change agent. This is complex and often emotionally

r

r

r r

r

tough work. It is easy to get sucked into being part of the problem rather than part of the solution. The chances of this happening are less if these types of intervention can be taken to supervision. Keep your eye on the goal and review progress regularly. It is easy to drift into a malaise and to collude with the care-team scripts. It is easy to be distracted by other issues that, although important, may be having the effect of helping to avoid what the main focus of the intervention needs to be. Again regular supervision and case note discipline can help here. Regular feedback and rewards for change. It is common for staff teams to lose commitment in a long-term project. Motivation increases if people get regular feedback on progress. The psychologist can provide a great deal of positive reinforcement for progress which in turn will increase motivation. Written reports and presentations help. There is very little published in this area. Writing the project up for publication or putting it in for a national award all help to maintain momentum. Empathy and relationships. This is the main vehicle by which care teams will be motivated to comply with the intervention. Regular reflection on the relationship with the care team as individuals and as a group can help ward off power struggles and side taking. Fight and flight responses. When teams or individuals are feeling threatened, they may enter a fight reaction where by they become aggressive and combative. ‘Us versus them’ language becomes common. Blame is assigned elsewhere. It is easy for the psychologist to become the target for blame in these situations. Be aware of issues of transference and countertransference. Particularly early on in an interventions, expect some regressed behaviour – projection, denial, defensiveness and acting out. It is important to recognize this for what it is. It is not the end of the world and it needs to be dealt with in an adult way. Likewise, staff teams may enter a flight reaction where they become absent, ‘forget’ appointments and meetings. Be tolerant of this whilst acknowledging it. There are some teams where change is too difficult. Despite best efforts there are teams that either cannot or will not change. Alternatively, change is not right for them at that point in time. Bow out gracefully and do as little damage as possible.

CONCLUSIONS Interventions aimed at the level of the organization of care show an appreciation of the fact that many of the problems encountered by older people in optimizing their psychological wellbeing relate more to pathologies inherent in the service system rather than being located in the individual client. Confusion, depression and anxiety are often made worse by care organizations that, on paper, exist to ameliorate such conditions. Like many psychologists working with older people I was struck very early on by how many of the difficulties experienced by my individual clients could not be understood without reference to the care organization. Care organizations are part of society. Postindustrial societies, with increasing numbers of people living into very old age, do not value their elders, particularly those who have dementia. Society sets a high status on youth, physical attractiveness and intellectual prowess. Ageism and ‘dementia-ism’ are powerful forces that are evident in poor service

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provision, resource allocation, media coverage, policy priorities, professional training and status (Brooker, 2003). This is expressed within care organizations as malignant social psychology (Kitwood, 1997), the bedrock of dehumanizing, task-focused care. The situation is maintained because of the relatively low level of complaints and low risk of litigation by this client group and the enormous cost that would be involved of setting it right. Improving the quality of services for older people is a challenge that politicians and society chooses to place as low priority. Set in this context, it is not surprising that care teams for older people struggle to provide psychologically enhancing care. What is surprising is the number of people working in care services who continue to try to improve things. Changing the culture of health and social care from task-focused to person-centred care for older people is an enormous challenge for all concerned. As psychologists, we are part of this system and we choose how we work to improve it. Working with individual clients is undoubtedly one way in which we do this. Whitby (2005) described achieving improvements for people living with dementia in residential care as a Sisyphean task. The task of Sisyphus was to continually roll a boulder up a hill. The boulder was heavy and continually rolled backwards. This resonates with many experiences of those trying to attempt psychologically supportive care for older people. In order to have any hope of pushing the boulder up the hill, we can choose to lend our weight to that of our colleagues and to use our specialist skills to come up with solutions that might help shift it a few inches. Shifting the boulder has to be easier if we are all pushing it in the same direction. Working directly at the level of the care team gives us a better chance of doing this.

ACKNOWLEDGEMENTS Thanks to Rosie Woolley and Jenny MacKenzie for their help with literature searching.

REFERENCES Allan, K. (2001) Communication and Consultation: Exploring Ways for Staff to Involve People with Dementia in Developing Services. Policy Press and the Joseph Rowntree Foundation, Bristol. Applebaum, S. & Wohl, L. (2000) Transformation or change: Some prescriptions for health care organizations. Managing Service Quality, 10(5), 279–98. Blunden, R., Kushlick, A. (1975). Looking for Practical Solutions. Age Concern Today, 13, 2–5. Bolton, J., Gee, I., Jackson, L. et al. (2000). Stepping back to move forward with DCM. Journal of Dementia Care, (July/August), 26–8. Bradford Dementia Group (2005) Dementia Care Mapping DCM, 8th edn. University of Bradford, Bradford. (Available only as part of basic DCM 8 course.) Brooker, D. (1994) Quality assurance: lessons learnt about putting it into practice. PSIGE Newsletter, 48, 37–41. Brooker, D. (2003) Maintaining quality in dementia care practice, in Dementia Care (eds T. Adams & J. Manthorpe) Arnold, London, pp. 240–55. Brooker, D. (2004) What is person centred care for people with dementia? Reviews in Clinical Gerontology, 13(3), 215–22. Brooker, D. (2005) Dementia care mapping: a review of the research literature. The Gerontologist, 45(Special issue 1), 11–18. Brooker, D. (2007) Person Centred Dementia Care: Making Services Better. Jessica Kingsley, London.

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Brooker, D. & Dinshaw, C.J. (1998) A comparison of staff and patient feedback on mental health services for older people. Quality in Health Care 7, 70–6. Brooker, D., Edwards, P. & Benson S. (eds) (2004) DCM Experience and Insights into Practice. Hawker Publications, London. Brooker, D., Foster, N., Banner, A., Payne, M. & Jackson, L. (1998) The efficacy of Dementia Care Mapping as an audit tool: report of a three-year British NHS evaluation. Ageing and Mental Health, 2, 60–70. Brooker, D. & Surr, C. (2005) DCM: Principles and Practice. University of Bradford, Bradford. Brownridge, G. (2001) The staff consultancy and counselling service: an organizational approach to staff stress. Clinical Psychology Forum 149(March), 13–18. Clare, L. & Cox, S. (2003) Improving service approaches and outcomes for people with complex needs through consultation and involvement. Disability and Society, 18(7), 935–53. Corrigan, P.W. & McKracken, S.G. (1995) Psychiatric rehabilitation and staff development: educational and organizational models. Clinical Psychology Review, 15(8), 699–719. Del Val, M.P. & Fuentes, C.M. (2003) Resistance to change: a literature review and empirical study. Management Decision, 41(2), 148–55. Department of Health (1990) MPAG; Manpower Advisory Group Report on Clinical Psychology. HMSO, London Dewing, J. & Pritchard, E. (2004) Including the older person with dementia in practice development, in Practice Development in Nursing (eds B. McCormack, K. Manley & R. Garbett). Blackwell, Oxford, pp. 177–96 and the commentary following by C. Clarke, pp. 197–9. Deys, C., Dowling, E. & Golding, V. (1989) Clinical Psychology: a consultative approach in general practice. Journal of the Royal College of General Practitioners, 39, 342–4. Ellis, R. & Whittington, D. (1993) Quality Assurance Handbook. Edward Arnold (Hodder), London. Embregts, P.J.C.M. (2002) Effect of resident and direct-care staff training on responding during social interactions. Research in Developmental Disabilities, 23, 353–66. Falender, C.A., Cornish, J.A.E., Goodyear, R. et al. (2004) Defining competencies in psychology supervision: a consensus statement. Journal of Clinical Psychology, 60(7), 771–85. Fossey, J., Lee, L. & Ballard, C. (2002) Dementia Care Mapping as a research tool for measuring quality of life in care settings: psychometric properties. International Journal of Geriatric Psychiatry 17, 1064–70. Frederiksen, L.W. (1982) Handbook of Organizational Behavior Management. John Wiley & Sons, New York. Freir, V. & Sutton, E. (2003) Pilot evaluation of a clinical child psychology consultancy service to Highland Region New Community Schools. Clinical Psychology, 31(November), 25–8. Georgiades, N. & Phillimore, L. (1975) The myth of the hero innovator and alternative strategies for organisational change, in Behaviour Modification for the Severely Retarded (eds C. Kiernan & P. Woodford). Associated Scientific Publishers, New York, pp. 313–19. Hill-Tout, J. & Heyes, E. (2001) Staff teams we love to hate: organizational interventions in supported accommodation. Clinical Psychology, 4(August), 14–16. Huffington, C. (1999) Containing failure: consultancy to a residential centre for adolescents. Clinical Child Psychology and Psychiatry, 4(4), 533–41. Hyer, L.A. & Ragan, A.M. (2002) Training in long-term care facilities: critical issues, in Emerging Trends in Psychological Practice in Long-Term Care (eds M.P. Norris, V. Molinari & S OglandHand). The Haworth Press, New York, pp. 197–237. Jeffery, D.P. (1986) The systems approach to changing practice in residential care, in Psychological Therapies for the Elderly (eds I. Hanley & M. Gilhooley). Croom Helm, London. Kets de Vries, M. (2004) Organizations on the couch: a clinical perspective on organizational dynamics. European Management Journal, 22(2), 183–200. Kitwood, T. (1992) A new approach to the evaluation of dementia care. Journal of Advances in Health and Nursing Care, 1(5), 41–60. Kitwood, T. (1997) Dementia Reconsidered. Open University Press, Buckingham. Lintern, T., Woods, R.T &, Phair, L. (2000a) Before and after training: a case study of intervention. Journal of Dementia Care (January/February), 15–17. Lintern, T., Woods, R.T. & Phair, L. (2000b) Training is not enough to change care practice. Journal of Dementia Care (March/Apr), 15–17.

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Martin, G. & Younger, D. (2000) Anti oppressive practice: a route to the empowerment of people with dementia through communication and choice. Journal of Psychiatric and Mental Health Nursing, 7, 59–67. Martin, G. & Younger, D. (2001) Person-centred care for people with dementia: a quality audit approach. Journal of Psychiatric and Mental Health Nursing, 8(5), 443–8. Mayall, E., Oathamshaw, S., Lovell, K., Pusey, H. (2004) Development and piloting of a multidisciplinary training course for detecting and managing depression in the older person. Journal of Psychiatric and Mental Health Nursing, 11, 165–71. Milne, D. (1988) Organisational behaviour management in a psychiatric day hospital. Behavioural Psychotherapy, 16, 177–88. Milne, D.L. & James, I.A. (2002) The observed impact of training on competence in clinical supervision. British Journal of Clinical Psychology, 41(1), 55–72. Moniz-Cook, E., Silver, M., Woods, R. et al. (1998) Can staff training reduce behavioural problems in residential care for the elderly mentally ill? International Journal of Geriatric Psychiatry, 13, 149–58. Moran, J. & Avergun, A. (1997) Creating lasting change. The TQM Magazine 9(2), 146–51. Morton, I. (1999) Person-centred Approaches to Dementia Care. Winslow, Bicester. Neel, A. (2002) How DCM may affect caregiver mappers. Journal of Dementia Care (July/August), 26–8. Richards, E., Bidder, R.T. & Gardner, S. (1992) Sleep clinics with health visitors: a two-year evaluation. Child Care, Health and Development, 18(6), 395–404. Roberts, N. (2000) Integrating staff support into an NHS Trust. Clinical Psychology Forum, 135 (January), 23–6. Sanchez, B. & Ferrari, J.R. (2005) Mentoring relationships of eldercare staff in Australia: influence on service motives, sense of community, and caregiver experiences. Journal of Community Psychology 33(2), 245–52. Singh, N.N., Wahler, R.G., Sabaawi, M. et al. (2002) Mentoring treatment teams to integrate behavioural and psychopharmacological treatments in developmental disabilities. Research in Developmental Disabilities, 23, 379–89. Singh, N.N.L., Winton, G.E., Wahler, A.S.W. et al. (2004) Mindful caregiving increases happiness among individuals with profound multiple disabilities. Research in Developmental Disabilities, 25, 207–18. Sluyter, G.A. & Mukherjee, A.K. (1993) Total Quality Management for Mental Health and Mental Retardation Services: A Paradigm for the 90s. National Association of Private Residential Resources, Annandale VA. Steers, R.M., Mowday, R.T. & Shapiro, D.L. (2004) The future of work motivation theory. Academy of Management Review, 29, 379–87. Terry, P. (1994) Working with staff and patients in a hospital for the elderly. Psychodynamic Counselling, 1(1), 21–45. Thornton, A., Hatton, C. & Tatham, A. (2004) Dementia care mapping reconsidered: exploring the reliability and validity of the observational tool. International Journal of Geriatric Psychiatry, 19, 718–26. Turpin, G. (1994) Service Evaluation within the NHS: the challenge to applied psychological research. Clinical Psychology Forum, 72, 16–19. Whitby, P. (2005) Inpatient dementia care: a Sisyphean task? PSIGE Newsletter, 90(July), 30–6. Wylie, K., Madjar, I. & Walton, J. (2002) Dementia care mapping: a person-centred approach to improving the quality of care in residential settings. Geriaction, 20(2), 5–9.

Index

ABC (antecedents/behaviour/consequences) model 574, 576–7 ‘abnormal’ aspects, ageing 1, 17–18, 33–40, 365, 375–7 abuse problems 276, 289–90, 301, 311–20, 481–2, 551, 553, 558, 582 alcohol consumption 124, 313–15 anger-management-with-education treatment model 316, 318–20, 553, 558, 582 case management/support maintenance 319 country comparisons 311–13 definitions 311–12 dependency factors 313 family caregivers 276, 313–20, 551, 553, 582 family-therapy treatment model 316, 317–18, 320 flowchart 319–20 interventions 315–20, 481–2, 582 prevention approaches 315–20 residential care 289–90, 301, 481–2 risk factors 312–15 social isolation 314 Social Services 315–20 staircase treatment model 316–17, 320 statistics 311–14 stressors 313–14 treatments 316–20, 481–2, 553, 582 types 311–12, 315 UK 311–13, 319–20, 481–2 US 311–13, 319–20 ‘victim to offender’ factors 314–15 accommodation issues, assimilation and accommodation processes 20–3, 27–9 acetylcholinesterase (ACheEIs) 537 acquisition/storage of information, memory 42–4 Activities of Daily Living Index (ADL) 203, 387–92, 403 ‘activity limitation’ 151 activity limitations, QoL reduction factors 64 acute stress disorder (ASD) 106 see also anxiety disorders

AD see Alzheimer’s disease Adams, Dawn 341–9 adaptation issues, concepts 17–29, 76–7, 84, 442–3 ADL see Activities of Daily Living Index Adler, A. 28 ADLST test 389–91 ADQ see Approaches to Dementia Questionnaire aerobic exercises 518 affectiveness disorders see also depression concepts 100–8, 210–13, 393–8, 514, 516, 579–80 age bias, dementia 509 Age Concern England 8 age discrimination 5–7, 10–12, 153, 242–50, 452–3, 608–9 see also ageism age-graded influences, cognition 34–5, 41–2, 45 ageing attitudes 6, 13, 17–18, 23–4, 63–4, 66–8, 81–90, 116, 240–50, 353–6, 452–3, 457–8, 524, 562–3, 580–90 concepts 1–14, 17–29, 40–2, 66–7, 147, 237–50, 325–35, 341–6, 429–36, 439–54, 474–83 cultural issues 7–8, 27–9, 237–50, 439–54, 563 ‘decline ideology’ 240–2 definitions 7, 17, 40–1 genetics 40–2 key aspects 1–2, 9–10 machine metaphors 240–2 media stereotypes 452–3 negative attitudes 17–18, 116, 138–9, 240–50, 270–1, 328–9, 353, 417–23, 452–3, 524 ‘normal/abnormal’ aspects 1, 17–18, 33–40, 365, 375–7, 507–9 positive attitudes 6, 13, 17–18, 23–4, 63–4, 66–8, 81–90, 116, 241–2, 247–50, 270–1, 302–5, 353–6, 415–23, 452–3, 457–8, 524, 562–3

614 ageing (cont.) psychological survival 23–9 self-concepts 6–7, 17–18, 20–9, 62–7, 147–8 in society 5–8, 149–54, 452–3, 608–9 statistics 2–5, 58–9, 257–8, 328–9, 439–40 successful ageing 17–29, 49–50, 63–4, 147, 247–8, 508–9 terminology critique 241–2 types 36–40 ageing populations see also life expectancies challenges 2, 6–7, 38–40, 257–8, 335, 341–2, 394–8, 431–6, 457–8, 469–70, 540–1, 571–90, 608–9 statistics 2–5, 255, 257–8, 439–40 ageism 5–7, 10–12, 118, 153, 242–50, 452–3, 608–9 see also age discrimination definition 242 medical procedures 7, 242–3 referrals 12, 242–3, 328–9, 474 agendas, CBT structure 465–9 aggression 393–407, 571–2, 580–90 agitated behaviour 395–8, 525–6, 571–90 agnosia 171 agoraphobia 105 see also anxiety disorders agraphia, AD 170 alcohol consumption 59–60, 113–15, 124, 201–2, 313–15 Allan, Kate 237–53 ALS see amyotrophic lateral sclerosis Alzheimer’s disease (AD) 38, 45, 47, 60, 124, 146–8, 154, 161–72, 185–91, 266, 325, 343–4, 377–81, 418–20, 432, 452, 498, 513, 534–7, 552–5, 559 see also dementia; neurodegenerative disorders assessments 162–72, 377–81, 418–20 capacity considerations 432 causes 162, 164, 171 concepts 146–8, 154, 161–72, 266, 343–4, 377–81, 418–20, 432, 452, 498, 534–7, 552–5, 559 Down syndrome 343–4 executive functioning 163–4, 171–2 language impairment 167–70, 172 memory 163–72, 377–81 neurobiological changes 146–8, 162, 164, 171 NINCDS-ADRDA criteria 162, 379 preclinical features 163 reading abilities 169–70 support groups 554–5, 563–4 trauma 513

INDEX visuospatial ability 162, 163–4, 171–2, 174–6 writing/spelling impairment 170 amnesia 163–4, 209–10 amygdala 164 amyloid deposits 164 amyotrophic lateral sclerosis (ALS) 161, 174 see also motor neurone disease Anderson, Elizabeth 145–59 Anderson, J.E. 18–19 anger-management-with-education treatment model, abuse problems 316, 318–20, 553, 558, 582 angina 58–9 antidepressants 117, 461–2, 474 antihypertensives, side effects 100 anxiety disorders 1, 17, 63–4, 76–7, 97–8, 104–8, 188–95, 210–13, 224–5, 313–15, 343, 370–1, 393–8, 415–23, 458–71, 523–4, 531–2, 551–64, 571–90, 608 assessments 98, 104–8, 370–1, 393–8, 415–23 BAI 107 clinical assessment 104–8, 370–1, 393–8 concepts 1, 63–4, 97–8, 104–8, 188–95, 210–13, 224–5, 313–15, 343, 370–1, 393–8, 415–23, 458–71, 531–2, 551–64, 571–90 dementia 107, 370–1, 523–4, 531–2, 571–90 depression 97, 103, 106–8 neurocognitive changes 106–7 PD 188–95 PTSD 126 self-report inventories 107 STAI 107 statistics 105, 328–9 treatments 1, 190, 458–71, 531–2 types 105–7 apathy, PD 186, 188–9, 190–1 aphasia 167–8, 172, 204–5, 500–1, 518 Approaches to Dementia Questionnaire (ADQ) 302–3 apraxia 171, 175–6, 210 aromatherapy 525–6, 588–9 arthritis 4, 7, 58, 59, 69, 458, 514, 577, 584–5 articulatory loop system 167 ASD see acute stress disorder Asian cultures see also ethnicity socio-cultural context 448 aspirin 59 assessments 1–2, 13, 33–50, 87–8, 98–100, 104–8, 116, 161–76, 363–81, 385–407, 415–23, 429–36, 475–6, 572–90, 598–601

INDEX see also neuropsychological assessments AD 162–72, 377–81, 418–20 anxiety disorders 98, 104–8, 370–1, 393–8, 415–23 behaviours 370–1, 385–6, 393–407, 574–90 capacity/consent considerations 429–36 care teams 598–601 cognition 33–50, 163–72, 204–5, 363–81, 385–407 concepts 1–2, 13, 33–50, 87–8, 98–100, 104–8, 116, 161–76, 363–81, 385–407, 475–6, 572–90, 598–601 dementia 1–2, 9, 38–9, 98, 161–76, 344, 363–81, 385–407, 418–23, 572–90 depression 98–108, 116, 370–3, 377–81, 393–8, 415–23, 475–6 diagnostic disclosure 373–5 domains 575–90 DSM assessments 38, 98, 100–1, 104–7, 121, 162, 211, 219–20, 379 examination checklist 50 family caregivers 275–7, 574–90 functional limitation 385–407, 453, 572–90 glossary of measures 405–7 ICD assessments 38, 98, 162, 219–20, 379 influencing factors 99–100 information-gathering stage 364–5, 387–405 insomnia 219–20, 226–7 memory 33–50, 204–6, 208–9, 364–81, 385–407 mood assessments 387, 392–8, 415–17, 420–3, 574–90 needs 385–6, 398–405, 573–4, 575–90 psychoanalysis 475–6 psychological problems 97–108, 574–90 PTSD 124–6 referral questions 375–81 self-reports by proxy 416–17 staff 574–90, 598–601 stages 363–75, 387–405 strokes 202–4, 377, 418–19, 513–14 tests 36–50, 98–100, 161–76, 204–5, 363–81, 385–407, 577–8 UK 386–405 well being (quality of life) 387, 415–23 who-where-when questions 576–7 assimilation and accommodation processes, concepts 20–3, 27–9 association cortex, AD 147–8, 162 asthma 4 attachment theory 478–9, 527–8 attempted suicides 111, 114–18 see also suicides attention impairment 170, 172, 204–8, 369–70, 381, 443, 513–14

615 attitudes ageing 6, 13, 17–18, 23–4, 63–4, 66–8, 81–90, 116, 240–50, 353–6, 452–3, 457–8, 524, 562–3, 580–90 death 241–2, 353–6 staff 302–5, 357, 562–3, 580–90, 595–609 Australia 2–4, 10, 63, 76, 78, 88, 311–13, 324, 326 autobiographical memory 164–5, 368–70, 376–7, 533–4 autopoieses 490–1 AWS scale 396–8 B-ADL test 388–91 BADL test 389–91 BAI see Beck Anxiety Inventory Baltes, M.M. 19, 27 Baltes, P.B. 19, 27, 29 BARTHEL test 203, 387–92 BASDEC 421–2 BASOLL scale 392–8 Bateson’s theories of mind 490 BDI see Beck Depression Inventory BEAM-D scale 395–8 Beck Anxiety Inventory (BAI) 107 Beck Depression Inventory (BDI) 104, 421–2, 468 Beck’s Hopelessness Scale (BHS) 116 BEHAVE-AD scale 394–8 behavioural and psychological symptoms (BPSD) see also challenging behaviour concepts 394–8, 571–90 behavioural therapy 89, 190–1, 461–2, 552, 557–62 behaviours 58–62, 66–7, 148, 150, 344–5, 370–1, 386–405, 523, 529–32, 552, 557–62, 571–90 see also noncognitive . . . assessments 370–1, 385–6, 393–407, 574–90 challenging behaviour 395–8, 571–90 cohort effects 446–7 dementia 148, 150, 344–5, 370–1, 386–405, 523, 529–32, 552, 571–90 rating scales (BRS) 392–8, 404, 573–90 risk of harm 576 Belgium 326 belief systems 28–9, 447–54 see also religion benzodiazepines 219, 225–6, 580, 583–4 bereavement 75–90, 113–15, 124–5, 274–5, 352–6, 444–5, 475–6 see also death adaptation factors 84 concepts 75–6, 79–90, 274–5, 352–6, 444–5, 475–6

616 bereavement (cont.) continuing bonds 84–5, 90 coping strategies 84–90 definition 79 depression 80–90, 103, 475–6 dual process model 84–5, 86–7 emotional/cognitive responses 80, 84–90 family grief 82–3, 274–5, 355 four-component model 87 interventions 75–6, 79, 87–90 loneliness 80, 113–14, 116, 139 mortality risk 79–80 nonspousal relationships 82–3 physical health 80 psychological interventions 75–6, 79, 87–90 reactivated trauma 124–5 religion 76–7, 84 response patterns 81–4 social support 84–5, 88–90, 113–15 spouses 79–90 statistics 79–90 suicides 80, 113–15 traumatic/complex grief 81, 83–4, 88–90 two-track model 84–5 types 79 Berman, Karen 549–69 beta blockers 59 BHS see Beck’s Hopelessness Scale Bhutani, Gita E. 323–39 biases 23, 35, 139 Bion, Wilfred 474–5 biopsychosocial approach dementia 145–54, 239–50, 394–8, 571–90 PD 189–90, 193–5 bipolar disorder 100–1, 102 see also depression Bird, Mike 571–94 blame cultures, care teams 608 Block Design Test 36, 39, 45, 171–2 blood pressure 4, 38, 58–9, 100, 201–2 boredom 580 Bowen’s family theory 490 BPS see Bulletin of the British Psychological Society BPSD see behavioural and psychological symptoms Bradburn’s Affect Balance Scale 417–18 brain 100, 146–8, 162, 507–9, 532, 535–7 see also neurodegenerative disorders brain imaging 46–7, 134 Brandtst¨ader, J. 20–3, 27–8 breast cancer 68 British Psychological Society 331, 375 Brodaty, Henry 549–69 bronchodilators, side effects 100 Brooker, Dawn 595–609

INDEX Browne, Kevin D. 311–22 BRSD scale 395–8 Bulletin of the British Psychological Society (BPS) 8 ‘burden’ concepts, older people 5–6 burnout issues, staff 300–2 Buschke selective reminding procedure 44 CAD see coronary arterial disease CALTAP see contextual adult lifespan theory for adapting psychotherapy CAMCOG screening test 368 CAMDEX 368 Canada 78, 89, 293, 301–2, 311–13, 324, 326 cancers 58–61, 63, 65, 68, 76, 77–9, 324–5, 351, 458 CANDID 555 CANE scale 401–2 capacity considerations, concepts 429–36 CAPE BRS scale 392–8 carbon monoxide poisoning, suicide methods 113 cardiovascular disease 4, 58–9, 76, 77–8, 201–14, 272, 324–5, 379–80, 458, 514–18 see also coronary . . . ; strokes care homes see residential care Care Programme Approach 386 CARE scale 400 care teams 595–609 assessments 598–601 blame cultures 608 consultancy relationships 604–5 developmental evaluations 606–7 formulation issues 598–601 guided fantasy exercises 599–601 interventions 595–609 long-term targets 607–8 mentors 604–5 quality improvement cycles 606–7 reviews 607–8 service evaluations 606–7 staff support 605–6 supervision/consultancy interventions 602, 604–5 training 602–4 caregivers 1–2, 64–5, 82–3, 152–3, 191–5, 204–14, 224–5, 255–82, 299–300, 313–20, 352–6, 373–5, 416–17, 419–23, 444, 451–4, 531–41, 549–64, 573–90 see also family caregivers challenging behaviour 574–90 education strategies 276–7, 550–2, 557–8, 560, 572, 581–3, 602–4 interventions 1–2, 191–5, 255–82, 531–41, 549–64, 581–90

INDEX psychoanalysis 474–83 psychological distress 1–2, 64–5, 191–5, 259–82, 313–14, 355, 422–3, 451–2, 549–64, 573–90 statistics 64–5, 258–9, 549–51, 552, 557–63 training 277–8, 551–64, 581–90 CareNap-D 402–3 Carstensen, L. 22–3 cascade model of ageing and cognitive outcomes, concepts 36–40 case-specific interventions, dementia 574–90 cataracts 343, 458 catastrophe theory 491 CBS see challenging behaviour scale CBT see cerebral blood flow; cognitive-behavioural therapy CCMSC see Contextual, Cohort-based, Maturity, Specific Challenge model CDR scale 394–8 Center for Epidemiologic Studies Depression Scale (CES-D) 104 CERAD scale 377, 380, 394–8 cerebellum 508–9 cerebral blood flow (CBT) 508 cerebrovascular disease (CVD), AD 162 CES-D see Center for Epidemiologic Studies Depression Scale challenges 2, 6–7, 12–13, 38–40, 249–50, 335, 394–8, 431–6, 458–71, 540–1, 571–90, 608–9 challenging behaviour see also behavioural and psychological symptoms concepts 395–8, 571–90 definition 573 challenging behaviour scale (CBS) 395–8, 573–90 chaos theory 491 child abuse, PTSD 121–4, 126–9 China, US 8 choice reaction time (CRT) 208, 443 cholesterol 59–60 Chrichton scale 392–8 chronic conditions, statistics 3–5, 458 chronic lung disease 4 Clare, Linda 133–43, 145–59, 363–83, 523–48 clinical psychologists see psychologists clinical trials 23, 524, 531–2, 534–5, 539–40, 562, 582–3 CMAI scale 396–8 CMM see coordinated management of meaning COBRA scale 395–8 Cockburn, Janet 201–17 cognition see also communications; memory; problem solving

617 AD 163–72 assessments 36–50, 163–72, 204–5, 363–81 cascade model of ageing and cognitive outcomes 36–40 cohort effects 35, 41–2, 365, 445–7 compromised cognition 50 concepts 33–50, 58–9, 163–72, 185, 186, 188, 238–50, 363–81, 404–5, 441–7, 507–9 crystallized abilities 34–5, 44–50, 443 current/previous functioning comparisons 47–50 definition 33, 34–5, 44 disuse hypothesis 41–2, 147 engaged life styles 41, 147, 151–2, 247–8, 292, 295–6, 524–6, 580 executive functioning 46, 163–4, 171–2, 174–6, 369–70, 381, 507–9, 514, 518 fluid abilities 34–5, 44–50, 443 ‘hyper-cognitive’ society 147–8 improved performance 42 life-span developmental model 17–18, 34–50, 430–1, 441–3, 507–9 maturation factors 441–3 mental speed 36, 39–40, 45–6, 49–50, 127–8, 163–72, 443, 507–9 non-normative influences 35–6 normative age-graded influences 34–5, 41–2, 45, 441–3, 507–9 normative history-graded influences 35–6, 577–80 processing strategies 46–7 self-evaluations 48–9 stress models 40–2, 68–9, 86–7, 573–4 strokes 201–14, 513–15, 516–17 tests 36–50, 163–72, 204–5, 363–81, 385–407, 577–8 types of ageing 36–40 cognition-focused approaches, dementia 523, 532–41 cognitive coping, concepts 270–1 cognitive rehabilitation 532, 537–41 see also rehabilitation cognitive stimulation 1–2, 532, 534–5 see also interventions cognitive therapy 89, 228–9, 318–19, 460–1 cognitive training 532, 535–7 cognitive-behavioural therapy (CBT) 9–10, 69–70, 117, 127–9, 139–40, 190–2, 225–9, 279, 325, 327–9, 457–70, 530–1, 597 agendas 465–9 applications 462–71, 530–1 collaborative empiricism 465, 468–9 concepts 139–40, 190–2, 225–6, 279, 325, 327–9, 457–70, 530–1, 597 dementia 530–1 DTRs 464–70

618 cognitive-behavioural therapy (CBT) (cont.) duration 463–5 empirical evidence 459–62 examples 458–9, 462–5, 467–8 goals 463–5 homework uses 465–9 overview 458–9 phases 463–5 relapse prevention plans 464–5 schemata 139–40 Socratic questioning 465–9 structural elements 465–9 WAS 464, 468–9 cohort effects 7–8, 10–11, 35, 41–2, 112, 125, 365, 439–41, 445–54, 469–70, 584–5 Coleman, Peter G. 17–32, 244 collaborative empiricism, CBT 465, 468–9 collectivism/individualism cultures 449 commitment benefits 28–9 communications 33–4, 490 see also cognition; feedback Community Care Act 386 community clinical psychology 243, 248, 276–82 compensation issues, SOC model 19–20, 27–9, 49–50 complexity theory 491 comprehension problems, AD 168–9 compression of morbidity, life expectancies 5–6 computer-assisted training, rehabilitation 516, 536 ‘concept of whole life’ 243 consent considerations 429–36 constipation 354, 578–9 consultancy model care teams 604–5 service-delivery models 329–33 container-contained theory, psychoanalysis 474–5 contextual adult lifespan theory for adapting psychotherapy (CALTAP) 439–54 Contextual, Cohort-based, Maturity, Specific Challenge model (CCMSC) 439–41, 445–6, 449–54 continuing bonds, bereavement 84–5, 90 control theory 21–2, 25–6, 40–1, 62–7, 70, 225, 268, 271, 354–5, 578–9 see also mastery convening considerations, systemic interventions 498–501 coordinated management of meaning (CMM) 493 coping strategies see also emotion-focused . . . ; problem-focused . . .

INDEX concepts 18–32, 68–70, 84–90, 122–3, 128–9, 137–9, 149–54, 192–5, 260–1, 268, 270–1, 276–82, 550–64 religion 271 COPM measure 404 Cornell Scale for Depression in Dementia (CSDD) 422–3 coronary arterial disease (CAD) 4, 58–60, 63, 76, 77–8, 106, 324–5, 458, 514 psychological impacts 59, 63, 106 statistics 58–9, 458 coroners, ‘open’ verdicts 111 cortical basal degeneration (CBD) 175–6, 185–6 cortisol levels, stress models 40–1 counselling approaches, family caregivers 277, 279–82, 552–64 countertransference concepts 12–13, 475–83 couples psychotherapy 478–9 Court of Protection 433–4 Crossley, Margaret 505–21 crystallized abilities 34–5, 44–50, 443 CSADL test 389–91 CSDD see Cornell Scale for Depression in Dementia cultural issues 7–8, 27–9, 57–8, 237–50, 263, 439–54, 563, 608–9 see also ethnicity; socio-cultural . . . CALTAP 439–54 concepts 447–54, 563, 608–9 display rules 448–9 family caregivers 263, 449, 451–4, 563 help-seeking behaviours 447–9, 453, 563 illness interpretations 447–9 individualism/collectivism contrasts 449 current/previous functioning comparisons 47–50 CUSPAD scale 394–8 CVD see cerebrovascular disease cybernetics 490–1 DADL test 389–91 DAFS test 389–91 DAQCOTS test 389–91 DASNI 555 Davenhill, Rachael 473–87 Davies, Steve 121–31 DBDS scale 395–8 DBRI scale 395–8 DBRS scale 395–8 DCM see Dementia Care Mapping death 13, 18, 75–90, 201–2, 241–2, 351–6, 509–10 anxiety disorders 76–7 attitudes 241–2, 353–6 common causes 76, 201–2, 458, 509–10, 513 concepts 75–90, 201–2, 241–2, 351–6, 458, 509–10, 513

INDEX ‘good death’ concepts 78 reconciliation needs 76–9 statistics 76, 201–2 wish to live 78–9, 89–90 decision making 33–4, 429–36 see also cognition declarative memory see also episodic . . . ; semantic . . . concepts 43–4 ‘decline ideology’ 240–2 degenerative processes 59–60, 76, 161–76 deliberate self-harm (DSH) 114–15, 396 delirium 98, 124, 188–9 delusions 134, 571–2, 579–80 dementia 1–2, 8–11, 23–4, 33, 38–41, 47, 98, 103–4, 107, 124, 145–54, 161–76, 185–95, 238–50, 289–305, 328–35, 341–6, 351–6, 363–81, 394–405, 418–23, 429–36, 476–7, 505–9, 523–90, 607–9 see also Alzheimer’s . . . ABC (antecedents/behaviour/consequences) model 574, 576–7 age bias 509 aggression 393–407, 571–2, 580–90 agitated behaviour 395–8, 525–6, 571–90 anxiety disorders 107, 370–1, 523–4, 531–2, 571–90 assessments 1–2, 9, 38–9, 98, 161–76, 344, 363–81, 394–405, 418–23, 572–90 behaviours 148, 150, 344–5, 370–1, 386–405, 523, 529–32, 552, 571–90 biopsychosocial approach 145–54, 239–50 BPSD 394–8, 571–90 capacity/consent considerations 429–36 case-specific interventions 574–90 cases in challenging behaviour 583–90 causes 161–76, 572–4, 577–90 CBT 530–1 challenges 394–8, 540–1, 571–90, 608–9 clothing problems 579 cognition-focused approaches 523, 532–41 coping strategies 149–54, 270–1 costs to society 550, 571–2 definition 161, 379 depression 103–4, 186, 370–1, 377–81, 523, 529–32, 571–90 disclosure of diagnosis 373–5 discomfort factors 578–9, 583–4 domains of assessment 575–90 Down syndrome 343–6 drugs 148, 535–7, 572–3, 578–80, 583–90 emotion-focused approaches 523, 526–9, 532–4 end-of-life care 78, 351–6 enriched environments 41, 147, 151–4, 247–8, 292, 293–7, 525–6, 575–90

619 exercise 60, 526, 552, 580, 589 family caregivers 152–3, 263–82, 352–6, 373–5, 531–41, 549–64 functional analysis 574–90 independence issues 529–31 interventions 148, 152–4, 328–35, 345–6, 476–7, 505, 523–41, 549–64, 571–90 LOP 133–4, 135 ‘malignant social psychology’ 150–1, 239–40, 524, 537, 597–8, 609 massage benefits 524, 526, 589 memory 33, 38–40, 149, 162–76, 344–5, 364–81, 385–407, 527–41 moderate/severe distinctions 380–1 music therapy 525, 527–8, 572, 589 neurological elements 145–8, 153–4, 161–76, 185–95, 509 neuropsychological assessments 1–2, 161–76, 363–81 nonhuman aspects 147–8 one-behaviour-syndrome-one-treatment paradigm 572–4 palliative care 351–6 parent fixations 527–8 PD 175, 185 person-centred care 151–2, 353–4, 598, 609 pet animals 525–6 politics 153, 239–40, 246 progressively lowered stress threshold hypothesis 573–4, 587–90 protective factors 41 psychoanalysis 476–7, 528–9 psychological problems 145–54, 161–76, 571–90 psychosocial aspects 145–6, 148–54, 238–50, 394–8, 571–90, 597 psychotherapy 476–7, 528–9 rating scales 394–8, 573–90 rehabilitation 152–4, 505, 523–41 relationships 148–54, 238–50, 580–3 relaxation techniques 531–2, 589 reminiscence work 532–4, 540, 589 respite care 552, 555–6, 561–2 self-concepts 147–54 Sisyphus analogy 609 sleep 222, 224–5, 395–8, 571–90 social context 145–54, 268–70, 341–6, 571–90 stages 149, 380–1, 528–9, 535–8, 550, 579 stimulation and activity approaches 523–6, 528, 572, 589 strokes 161, 201–14 suicides 114 tests 1–2, 161–76, 363–81, 385–407, 577–8 trauma 513

620 dementia (cont.) treatments 41, 148, 152–4, 328–35, 345–6, 476–7, 505, 523–41, 571–90 types 379–81 unmet needs hypothesis 573–4, 575–90 user/carer participation 153, 213, 239–40, 597 values 238–50 wandering behaviour 395–8, 571–90 well being (quality of life) 150–4, 387–405, 523, 532–41 Dementia Care Mapping (DCM) 292–3, 297–8, 420–1, 604, 607 DEMQOL 420 Denmark 311–13, 326 depression 1, 11, 17, 63–70, 97–108, 114–18, 136–7, 186–95, 210–13, 263–82, 290, 313–15, 343, 370–3, 377–81, 393–8, 415–23, 445–6, 453, 457–70, 571–90, 608 antidepressants 117, 461–2, 474 anxiety disorders 97, 103, 106–8 assessments 98–108, 116, 370–3, 377–81, 393–8, 415–23, 475–6 BDI 104, 421–2, 468 bereavement 80–90, 103, 475–6 CBT 69–70, 117, 190–2, 279, 458–71, 530–1 clinical assessment 100–8, 116, 370–1, 377–81, 393–8 cohort effects 445–6 concepts 1, 11, 63–5, 69–70, 97–108, 114–18, 186, 188–91, 210–13, 290, 313–15, 343, 370–3, 377–81, 393–8, 445–6, 453, 457–70, 475–83, 571–90 definition 100 dementia 103–4, 186, 370–1, 377–81, 523, 529–32, 571–90 family caregivers 64–5, 191–5, 263–82, 313–15, 371, 416–17, 422–3, 531–41, 550–64, 573–90 GDS 104, 107, 116, 371, 394–8, 421–3, 468 insomnia 224–5 LOP 140 medication factors 99–100 memory problems 103–4 PD 186, 188–91 PTSD 126 residential care 117–18, 290 self-report inventories 103–4 statistics 101–2, 271–2, 290, 328–9, 377–8 strokes 210–13, 514, 516 suicides 100, 102–3, 114–18 treatments 1, 11, 69–70, 98–9, 117–18, 190–1, 210–13, 453, 457–70, 473–83, 580

INDEX types 10–12, 377–8 developmental perspectives 17–18, 34–50, 248–50, 441–54, 606–7 diabetes 4, 38, 458, 514 diet, poor diet 58–60, 201–2 diffuse Lewy body disease (DLBD) see also neurodegenerative disorders concepts 161, 185–7, 379–80, 432, 584–5 digestion problems 59 Digit-Span test 36, 43, 163, 369–70 disabilities 151, 443–4 see also intellectual . . . disclosure of diagnosis, dementia 373–5 discrimination see age discrimination disease-related ageing see secondary ageing diseases, statistics 4–5, 58–9 disengagement responses 27–8 see also control theory dissociative states 124 ‘distance from death’ period see also tertiary ageing concepts 39–40 disuse hypothesis, cognition 41–2, 147 diversity issues, concepts 7, 237–8, 243–50, 446–54 Division of Clinical Psychology (DCP) 8–9 see also Psychologists’ Special Interest Group in the Elderly divorced parents, family caregivers 262–3 Doherty, Breid 385–413 dopamine, PD 174, 187 ‘dose’ predictor, PTSD 122, 125–6 Down syndrome 343 see also intellectual disabilities Downs, Murna 145–59, 351–9 DQoL 420 dropouts 23, 35 drowning, suicide methods 113 DRS scale 394–8 drugs 62, 99–100, 113, 115, 133, 148, 187, 188–95, 219, 225–9, 240–2, 325, 461–2, 535–7, 572–3, 578–80, 583–90 side effects 99–100, 188–9, 572, 578–80 suicide methods 113, 115 DSH see deliberate self-harm DSM assessments 38, 98, 100–1, 104–7, 121, 162, 211, 219–20, 379 DTRs see dysfunctional thought records dual process model, bereavement 84–5, 86–7 DVS scale 396–8 dying 13, 18, 75–90, 351–6 see also life expectancies; palliative care dynamic tapestry, cohort effects 7–8 dysfunctional beliefs, CBT 458–71, 597 dysfunctional thought records (DTRs), CBT 464–70

INDEX dyslexia 169 dysthymic disorder, concepts 100–2 eating disorders 11 ECA test 389–91 Edwards, Anne B. 255–88 EEG studies 220–3, 365, 517 ego 77, 477 ‘the elephant in the room’ 7 EMDR see eye-movement desensitization and reprocessing emotion-focused coping strategies 68–9, 88–90, 270–1, 523–9 see also coping strategies emotions 20–1, 22–3, 66–7, 68–9, 79–80, 88–90, 148–54, 165, 176, 248, 270–1, 278–82, 386–405, 442–3, 445–7, 458–71, 474, 523–9 see also noncognitive . . . CBT 458–9 cohort effects 445–7 dementia 148–54, 176, 523–9, 532–4 expressed emotion 270–1 family caregivers 550–64 grieving 79–80, 84–90 LOP 137–8, 139–40 maturation factors 441–3 positive psychology 248 psychoanalysis 474–83 PTSD 123, 125 recognition problems 176 reminiscence work 532–4, 540, 589 socio-emotional selectivity theory 20–1, 22–3, 442–3 strokes 203–4, 210–13 empathy gaps, staff 607–8 end-of-life care see also palliative care dementia 78, 351–6 engaged life styles, benefits 41, 147, 151–2, 247–8, 292, 295–6, 524–6, 580 enriched environments 41, 147, 151–4, 247–8, 292, 293–7, 525–6, 575–90 environmental issues ageing influences 40–2, 66–7, 147, 293–7, 450–4, 524–6, 575–90 challenging behaviour 575–90 enriched environments 41, 147, 151–4, 247–8, 292, 293–7, 525–6, 575–90 mastery 17–29, 66–7, 268, 271 neuropsychological assessments 365–7 personality-environment congruence 23–4, 26, 41–2, 68–9, 450–4 socio-cultural context 449–54 EPAC test 389–91, 400–1

621 epilepsy 343 episodic memory 37–50, 163–72, 176, 368–70, 376–7, 507–9 see also long-term memory Erikson, Joan 76 errorless learning (EL) 209, 518, 538–9 ethnicity 7, 112–13, 245–6, 447–54, 563 see also cultural issues display rules 448–9 help-seeking behaviours 447–9, 453 illness interpretations 447–9 suicides 112–13 European Convention on Human Rights 429, 431–2 European Union 5, 76, 326 see also individual countries EUROQol 419 euthanasia 111, 118 everyday function 387–405, 453, 523–4, 529–31 see also functional limitation evidence-based reviews 1–2, 9 see also NICE-SCIE guidelines executive functioning 46, 163–4, 171–2, 174–6, 369–70, 381, 507–9, 514, 518 exercise 59–61, 518, 526, 535–7, 552, 580, 589 explicit memory see declarative memory expressed emotion (EE) 270–1 ‘extra-care housing’ 291 extrapyramidal neurodegenerative disorders 174–6 extroversion, cohort effects 445–6 eye-movement desensitization and reprocessing (EMDR) 127–9 falls 4, 11, 20, 59, 273, 475–6, 514–15 familism, concepts 449 family caregivers 1–2, 64–5, 82–3, 152–3, 191–5, 255–82, 299–300, 313–20, 352–6, 373–5, 416–17, 419–23, 444, 451–4, 531–41, 549–64, 573–90 see also caregivers abuse problems 276, 313–20, 551, 553, 582 assessments for interventions 275–7 behavioural strategies 552, 557–62 bereavement 82–3, 274–5, 352–6 CBT 192, 279, 531–2 clinical interventions 275–82, 549–64 collectivism/individualism cultures 449 coping strategies 260–1, 268, 270–1, 276–82, 550–64 counselling approaches 277, 279–82, 552–64 cultural issues 263, 449, 451–4, 563 definitions 256–7 dementia 152–3, 263–82, 352–6, 373–5, 531–41, 549–64

622 family caregivers (cont.) depression 64–5, 191–5, 263–82, 313–15, 371, 416–17, 422–3, 531–41, 550–64, 573–90 disclosure of diagnosis 373–5 distance-caregiving trends 258–9 divorced parents 262–3 education strategies 276–7, 550–2, 557–8, 560, 572, 581–3 emotional support 550–64 family conflicts 260–1, 265–6, 276, 280–1 family counselling 280–2, 552–64 gender issues 258, 261–2, 265–6, 551 hierarchical preference pattern 549–50 insomnia 224–5, 278 interventions 1–2, 191–5, 255, 268–82, 531–41, 549–64, 581–90 leisuretime/social disruptions 265, 267–8, 276 mortality rates 272, 563 multicomponent interventions 559–60, 563 one-child families 259 outcomes of interventions 556–64 PD 191–5 primary stressors 261, 263–5, 276, 550–64 primary/secondary caregivers 257 psychological distress 1–2, 64–5, 191–5, 259–82, 313–14, 355, 422–3, 451–2, 549–64, 573–90 resources 260–1, 268–82, 550–64 respite care 552, 555–6, 561–2 secondary stressors 260–1, 263–4, 265–8, 276 self-concepts 268–82 self-reports by proxy 416–17 social context 261–3, 267–70, 276–82, 444, 449, 451–4, 550–64 statistics 64, 258–9, 549–51, 552, 557–63 stressors 1–2, 64–5, 191–5, 259–82, 451–2, 549–51 strokes 204–14, 273 suicides 276 support groups 281–2, 550, 553–5, 558, 563–4 telemedicine services 555, 559 timing/flexibility of interventions 551 training 277–8, 551–64, 581–90 transitional stages 272–5, 279, 552–3, 562–3 treatments 275–82, 549–64 well being (quality of life) 271–2, 419–23, 550–64 work disruptions 265, 266–7, 276 Family Survival Project 556 family-therapy treatment model 316, 317–18, 320, 496–501 Famous Faces Test 165, 369–71 FAQ test 388–91

INDEX FAST test 389–91 FDDS scale 396–8 feedback 366–7, 373–5, 490–1, 597, 608 feeding difficulties 395–8 feminism 245–6 filial piety 449 financial exploitation 312 see also abuse . . . Finland 311–13 firearms, suicide methods 113 fluid abilities 34–5, 44–50, 443 fMRI scans 540 foot health 59 formal care, family caregivers 555–6 four-component model, bereavement 87 fourth age of life 6 frailty, self-esteem 26 France 112, 294, 297, 326 Freud, Sigmund 241, 469, 474, 477 Froggatt, Katherine 351–9 frontotemporal dementias (FTD) see also neurodegenerative disorders concepts 161, 172–3 functional analysis, dementia 574–90 Functional Independence Measure (FIM) 203 functional limitation 4–5, 58–9, 385–407, 453, 529–31, 572–90 GAD see generalized anxiety disorder gait, negative attitudes 453 Garland, Jeff 8 gas supplies, suicides 112 GBS scale 394 GCS see Glasgow Coma Scale GDS see Geriatric Depression Scale gender issues 2–5, 58–9, 69, 76, 112–15, 135–6, 245–6, 257, 258, 261–2, 265–6, 458, 551 General Health Questionnaire (GHQ) 300–1, 422–3 general practitioners (GPs) 99–100, 323–35 see also primary care general semantics 490 general systems theory, concepts 489–91 generalized anxiety disorder (GAD) 105–8, 462–3 see also anxiety disorders generativity concepts, death anxiety 77 genetics, ageing 40–2 genograms 499–500 Geriatric Depression Scale (GDS) 104, 107, 116, 371, 394–8, 421–3, 468 Germany 326 gerontology challenges 6–7, 18–23 GHQ see General Health Questionnaire Giblin, Sharon 133–43 Glasgow Coma Scale (GCS) 510–11

INDEX Glasgow Outcome Scale (GOS) 512 glossary of measures 405–7 ‘good death’ concepts 78 GOS see Glasgow Outcome Scale groups 461–2, 479–81, 525–6, 552–5, 560, 596–7 see also teams GRS scale 392–8 Gubrium, Jay 243 guided fantasy exercises 599–601 guided recovery principles, rehabilitation 506, 517–18 guilt/regret 125, 190, 262, 265–6 habits 19 HADS see Hospital Anxiety and Depression Scale hallucinations 134, 173–4, 188–9, 571–2, 579–80 handwriting 47 hanging, suicide methods 113 hardiness 66–7 see also self-efficacy HBS scale 396–8 health see also physical health concepts 48–50, 57–62, 66–7 definition 57 Health Survey for England 4–5 healthcare-seeking behaviour 61–2, 66–7 hearing loss 59, 99–100, 136, 222, 275–6, 453, 514–15 heart disease see coronary arterial disease Hebbian neural network models 506 help-seeking behaviours, cultural issues 447–9, 453, 563 hemispheric encoding/retrieval asymmetry (HERA) 46 HERA see hemispheric encoding/retrieval asymmetry ‘hero innovators’ 596–7 hip replacements 20 hippocampus 147, 162, 164, 507–9 historical background, clinical psychology 8–9, 240–2 history-graded influences, cognition 35–6, 577–80 HIV/AIDS, self-concepts 149 hoarding 571–2 Hobson, Peter 185–99 Hodge, John 8 the home, dying 76 ‘homeliness’ impressions, residential care 291–7 homework uses, CBT 465–9 homosexuality 246

623 HoNOS 404 hospices 76, 351–6 see also dying Hospital Anxiety and Depression Scale (HADS) 371, 421–3 HPA see hypothalamic-pituitary-adrenal axis human rights 429, 431–2 Hungary, suicides 112 Huntington’s disease (HD), concepts 161, 176, 185–6 ‘hyper-cognitive’ society 147–8 hypertension 4, 38, 58–9, 100, 201–2, 343, 458, 513 hypoglycaemia 100 hypothalamic-pituitary-adrenal axis (HPA) 40–1 IAAS scale 396–8 IADL see Instrumental Activities of Daily Living ICD assessments 38, 98, 162, 219–20, 379 the Id 477 ID see intellectual disabilities IDD test 388–91 ideation, suicides 116–17 identity processes 23–6, 147–8, 238–40, 242–50 ideograms 500 IES see Impact of Events scale illness outcomes 1–2, 62–70, 82–3, 99–100, 106–8, 126, 152–3, 191–5, 202–14, 255–82, 354–5, 394–8, 443–54, 510–18, 556–64, 571–90 positive attitudes 6, 13, 17–18, 23–4, 63–4, 66–8, 524, 580–90 self-concepts 62–7, 147–8 image, self-concepts 24–6 imagery mnemonics, rehabilitation techniques 518 immunizing processes see also assimilation and accommodation processes concepts 21–3 Impact of Events scale (IES) 126 implicit memory see nondeclarative memory INCARE test 388–91 incontinence problems 276, 304, 343, 354, 530 India 112 individualism/collectivism contrasts, cultural issues 449 infantile relationships, psychoanalysis 474–83 inferences, fluid abilities 34–5, 44–50, 443 informants, current/previous functioning comparisons 48–50 information cognition 33–50 socio-emotional selectivity theory 20–1, 22–3, 442–3

624 insomnia see also sleep assessments 219–20, 226–7 causes 220, 223–5 CBT 225–9 concepts 122, 219–29 definitions 219–20 family caregivers 224–5, 278 personality types 223–5 predisposing/precipitating/perpetuating factors 220, 223–5 statistics 222–3 treatments 225–9 Instrumental Activities of Daily Living (IADL) 387–92, 403 integration model, service-delivery models 329–33 intellectual disabilities (ID) 2, 341–6, 443–5 concepts 341–6, 443–5 Down syndrome 343–6 interventions 345–6 International Classification of Sleep Disorders (ICSD) 219–20 interventions see also treatments abuse problems 315–20, 481–2, 582 behaviour-focused approaches 394–8, 523, 529–32, 552, 571–90 bereavement 75–6, 79, 87–90 care teams 595–609 caregivers 1–2, 191–5, 255–82, 531–41, 549–64 case-specific interventions 574–90 cases in challenging behaviour 583–90 CBT 9–10, 69–70, 117, 127–9, 139–40, 190–2, 225–9, 279, 325, 327–9, 457–70, 530–1, 597 challenging behaviour 395–8, 571–90 cognition-focused approaches 523, 532–41 cognitive stimulation 1–2, 532, 534–5 concepts 1–2, 9–10, 13, 63, 75–6, 78–9, 88–90, 98–9, 116–18, 152–4, 206–14, 439–54, 505–18, 523–41, 551–64 dementia 148, 152–4, 328–35, 345–6, 476–7, 505, 523–41, 549–64, 571–90 dying 78–9, 351–6 emotion-focused strategies 68–9, 88–90, 270–1, 523–9 family caregivers 1–2, 191–5, 255, 268–82, 531–41, 549–64, 581–90 ID 345–6 LOP 139–40 PD 187, 188–95 psychoanalysis concepts 473–83 psychosocial aspects 394–8, 571–90

INDEX psychotherapy 127, 439–54, 457–8, 528–9 PTSD 128–9 range 2, 9–10, 551–64 RCTs 524, 531–2, 534–5, 539–40, 562, 582–3 rehabilitation 9–10, 63, 152–4, 206–14, 505–18 socio-cultural context 439–54, 469–70 staff 302–3, 574–90, 595–609 stimulation and activity approaches 523–6, 528, 572, 589 suicides 116–18 systemic interventions 489–501, 597–8 VT 498–9, 526–9 IQ tests 368–70 Ireland 112 Israel 84 Japan 2–4, 112, 258 Jews 29 job satisfaction 300, 302–5 Johansson, Boo 33–55 Kalsy, Sunny 341–9 Kitwood, T. 238–40 Knight, Bob G. 439–56 Kobe earthquake 165 Korea 258, 452 Laidlaw, Ken 457–72 language impairment 167–70, 172, 204–6, 369–70, 443, 508–9, 513–14, 518 late onset psychosis (LOP) aetiology 135–9, 193–4 biographical features 136–9 causes 135–9, 193–4 concepts 133–40, 173, 193–4 coping strategies 137–9 dementia 133–4, 135 depression 140 early life traumas 138–9 emergence 133–4 emotions 137–8, 139–40 gender issues 135–6 interventions 139–40 personality types 136–9 psychosocial aspects 136–9 risk factors 135–6 schemata 139–40 social contact 137 statistics 133–5 treatments 133, 139–40 learning disabilities 603 legal background, UK 430–6 Lewy bodies 161, 185–7, 222, 379–80, 432, 584–5

INDEX lexical access, AD 168 liaison-attachment model, service-delivery models 329–33 life expectancies 2–6, 35, 38–9, 69, 76, 245–6, 255, 257–8, 341–2, 439–40, 457–8 see also ageing populations life review therapy 532–4 Life Satisfaction Index 419 life stories 7 life-span developmental model 17–18, 34–50, 248–50, 430–1, 441–3, 507–9 light therapy 572 Little, Adrienne 385–413 ‘living in the present’, benefits 26–7 locus of control (LoC) 25–6, 63, 66–7 loneliness 80, 113–14, 116, 139 long-term illnesses 3–4 long-term memory 36, 163–72, 368–70, 443 see also episodic memory longitudinal studies 23–4, 34–5, 42–50, 443 LOP see late onset psychosis lung diseases 58–60, 76, 77–8 machine metaphors 240–2 MADRS see Montgomery-Asberg Depression Rating Scale MAI scale 400 ‘malignant social psychology’ 150–1, 239–40, 524, 537, 597–8, 609 management styles, staff 298–9, 302–5 mapping techniques, systemic interventions 499–500 marital fit 479 massage benefits 524, 526, 589 mastery 17–29, 66–7, 268, 271 see also control theory maturation factors, socio-cultural context 440, 441–3 MCI see mild cognitive impairment Meals on Wheels 555–6 meaning 26–9, 87–8, 90, 240–2 media stereotypes 452–3 medical procedures, ageism 7, 242–3 medication see drugs medicine, concepts 240–2 melancholia 477 memory see also cognition AD 163–72, 377–81 aids 539 assessments 33–50, 204–6, 208–9, 344–5, 364–81, 385–407 concepts 33, 38–40, 42–4, 127–8, 162–76, 204–6, 208–9, 344–5, 364–81, 441–3, 507–9, 527–41

625 dementia 33, 38–40, 149, 162–76, 344–5, 364–81, 385–407, 527–41 life-span developmental model 34–50, 441–3, 507–9 ‘normal’ changes 1, 17–18, 33–40, 365, 375–7, 507–9 reminiscence work 532–4, 540, 589 strokes 204–6, 208–9, 513–14 tests 36, 42–4, 48–50, 204–6, 364–81, 385–407 types 43–4, 368–70 Mental Capacity Act 2005 433–4 Mental Health Act 433–4 mental speed 36, 39–40, 45–6, 49–50, 127–8, 163–72, 443, 507–9 mentors, care teams 604–5 mesiotemporal lobe structures 162, 164 meta-memory 48–9 MHLC see Multidimensional Health Locus of Control Milan Approach 496 mild cognitive impairment (MCI) 38–9, 47–9, 376–7, 536 mind events, brain structure 146–8 MIR (Memory-in-Reality) Test 46–7 MMSE screening test 44, 163, 204–5, 211–12, 367–8, 387 Moniz-Cook, Esme 571–94 Montessori activities 525 Montgomery-Asberg Depression Rating Scale (MADRS) 422–3 mood assessments 387, 392–8, 415–17, 420–3, 574–90 mood disorders see affectiveness disorders mood disruption, illness outcomes 63–4, 99–100, 106 Morgan, Kevin 219–33 Morris, Robin G. 161–84 Morrison, Val 57–74 MOSES scale 392–8 motivation issues, staff 598–608 motor neurone disease (MND) see also amyotrophic lateral sclerosis; neurodegenerative disorders concepts 161, 174, 185 MOUSEPAD scale 394–8 MRI scans 165, 517, 540 multidimensional assessments 574–90 Multidimensional Health Locus of Control (MHLC) 66–7 multiple prescriptions 62 multiple system atrophy (MSA) 185–7 Murdoch, Iris 167, 170 music therapy 525, 527–8, 572, 589 mythicizing features, the past 24–6

626 NART see National Adult Reading Test National Adult Reading Test (NART) 169, 369–70 National Health Service (NHS) 9–10, 62, 69–70, 213–14, 289–90, 297, 324–35, 386, 606–7 see also UK National Service Framework for Older People 7, 324–5, 386 needs, assessments 385–6, 398–405, 573–4, 575–90 negative attitudes ageing 17–18, 116, 138–9, 240–50, 270–1, 328–9, 353, 417–23, 452–3, 524 bereavement 83–7, 353 CBT 458–71 gait 453 neglect 311–20 see also abuse . . . nervous system 49–50 Netherlands 111, 304, 311–13, 326, 528 neuritic plaques (NP) 164 neurocognitive changes, anxiety disorders 106–7 neurodegenerative disorders 161–76, 185–95, 363–81 see also Alzheimer’s . . . ; Parkinson’s . . . neurofibrillary tangles (NFT) 162, 164 neuroleptics 580, 585 neurological elements, dementia 145–8, 153–4, 161–76, 185–95, 509 neurones, changes 508–9 neuropathology, AD 146–8, 161–72 neuropsychological assessments 1–2, 13, 40, 161–76, 363–81, 589 see also assessments; tests concepts 1–2, 13, 40, 161–76, 363–81 conduct 363–81 feedback 366–7, 373–5 information-gathering stage 364–5, 387–405 interpretation stage 364, 367, 371–3 planning stage 363–4, 365–75 referral questions 375–81 NFT see neurofibrillary tangles NHBRS scale 395–8 NHS see National Health Service NICE-SCIE guidelines 1–2, 127, 324–5, 386, 535 see also evidence-based reviews NINCDS-ADRDA criteria 162, AD 162, 379 NOIE scale 395–8 noise 396–8, 443, 526, 587–8 non-normative influences, cognition 35–6 noncognitive tests 370–1, 386–405 see also behaviour . . . ; emotion . . . ; tests

INDEX nondeclarative memory, concepts 43–4 Nordhus, Inger Hilde 97–110 ‘normal’ aspects, ageing 1, 17–18, 33–40, 365, 375–7, 507–9 normative age-graded influences, cognition 34–5, 41–2, 45, 441–3, 507–9 normative history-graded influences, cognition 35–6, 577–80 NOSGER scale 392–8 NP see neuritic plaques NPI scale 394–8 NSF see National Service Framework . . . nursing homes 24–8, 63, 76, 117–18, 273–4, 279, 289–305, 450–4, 527–41, 562–3, 574–90 see also residential care OARS scale 400 OAS scale 396–8 obesity 60, 343 objective health 48–50 observational rating methods, behaviours 393–8 observational techniques 23–4 obsessive-compulsive disorder (OCD) 105, 577, 581 occipital lobe 507–9 OCD see obsessive-compulsive disorder oestrogen production, LOP 135–6 O’Hanlon, Ann 17–32 ‘old-old’ 244 older people 2–7, 8–12, 27, 58–9, 257–8, 325, 429–36, 439–54, 459–70, 577–80 see also ageing ‘burden’ concepts 5–6 clinical psychology 8–12, 325–35 country comparisons 2–5, 27 definitions 7, 17, 40–1 statistics 2–5, 58–9, 257–8 ‘oldest-old’ 244 Oliver, Chris 341–9 ‘one day at a time’, benefits 27 one-behaviour-syndrome-one-treatment paradigm 572–4 ‘open’ verdicts, coroners 111 optimisation issues, SOC model 19–20, 27–9 optimism see also positive attitudes concepts 67–8 organizational management, concepts 597–8, 608–9 osteoarthritis 4, 7, 58, 59, 69, 458, 514, 577, 584–5 osteoporosis 60, 514 otitis media 343 overview 1–14 Oyebode, Jan R. 75–94

INDEX PADL(E) test 388–91 pain 62–70, 113–14, 354–5, 575–7, 578–90 palliative care see also dying concepts 351–6 definition 353 pain/symptom management 354–5 principles 353–5 psychologists 356–7 specialist/generalist care 353, 356 spiritual issues 353, 355 PAMIE scale 392–8 panic disorder (PD) 105–8 see also anxiety disorders parahippocampal region 162, 164 paranoia 136, 139, 173–4 parent fixations, dementia 527–8 Parkinson, James 187 Parkinson’s disease (PD) see also neurodegenerative disorders apathy 186, 188–9, 190–1 biopsychosocial approach 189–90, 193–5 caregivers 191–5, 225 case studies 193–5 causes 174, 187 concepts 64, 161, 174, 185–95, 225, 379–81, 418–19, 505–18 coping strategies 192–5 dementia 175, 185 depression 186, 188–91 diagnosis 187 drugs 187, 188–95 living with the disease 192–5 motor symptoms 187–9 psychological/neuropsychiatric disturbances 188–9 rehabilitation 505–18 statistics 186–7, 195 symptoms 174, 187–95 treatments 187, 188–95 ‘participation restriction’ 151 PCMs see positive core memories PD see panic disorder; Parkinson’s disease PDQ-39 418–19 Penn State Worry Questionnaire (PSWQ) 107 pensions, concerns 5, 18 perceived control 24–6, 66–7 perceptions 57–8, 66–7, 238–40, 249, 369–70 perceptual speed performance 36, 39–40, 49–50, 127–8, 163–72, 443, 507–9 performance management 597, 608 ‘person’ concepts, values 238–40 person-centred care, dementia 151–2, 353–4, 598, 609 personal challenges 2, 12–13, 249–50, 474–83 personality types 114, 115, 136–9, 223–5, 445–6

627 personality-environment congruence 23–4, 26, 41–2, 68–9, 450–4 pessimism, concepts 68, 190 PET 517 pet animals 525–6 PGDRS scale 392–8 pharmacotherapy, treatments 461–2, 536–7, 589, 605 Philadelphia Geriatric Center Morale Scale 419 physical abuse 311–20 see also abuse . . . physical disabilities 59, 64, 201–14, 442–54 physical diseases, statistics 4–5, 58–9, 257–8, 458 physical health 1–2, 9–10, 57–70, 76, 80, 99–100, 106–8, 121–2, 201–14, 271–2, 343–4, 442–54, 458 assessment considerations 99–100, 106–8 behaviour 58–62 concepts 57–70, 76, 99–100, 106–8, 122, 201–2, 271–2, 343–4, 442–3, 458 ID 343–4 physical illness see illness . . . Pick’s disease 173 pilot projects 602 placements, critique 9, 11–12 Plan, Do, See, Act cycle (PDSA) 606–7 PMA see Primary Mental Ability PMR see progressive muscle relaxation politics 153, 239–40, 245–7 Poon, Cecilia 439–56 poor health, gender issues 3–5, 58–9 positive attitudes 6, 13, 17–18, 23–4, 27–8, 63–4, 66–8, 81–90, 116, 241–2, 247–50, 270–1, 302–5, 353–6, 415–23, 452–3, 457–8, 524, 529–31, 562–3, 580–90 see also optimism positive core memories (PCMs) 128–9 positive psychology, concepts 247–8, 415–16 positive reappraisals 28 post offices 4 post-traumatic stress disorder (PTSD) see also anxiety disorders; trauma assessments 124–6 causes 121–9 CBT 127–9 child abuse 121–4, 126–9 comorbidity 126 concepts 105–8, 121–9 coping strategies 122–3, 128–9 EMDR 127–9 emotions 123, 125 extent/intensity of exposure 122 guilt/regret 125 individual differences 122–3 lifespan effects 121–2

628 post-traumatic stress disorder (PTSD) (cont.) measurement methods 126 PCMs 128–9 reactivations 124–5 reminders 128 social support 122–3, 128–9 statistics 121–2 thought-suppression strategies 128 treatments 127–9 wartime experiences 121–9, 138 power issues 246–7, 597–8 Powerful Others beliefs 66–7 pragmatics, AD 169 prefrontal cortex 507–9 previous/current functioning comparisons 47–50 primary ageing, concepts 36–8, 44–50, 441–3, 507–9 primary care 1–2, 11, 323–35 see also service context available therapies 328–9 constraints 333–5 country comparisons 324–8 definitions 323 funding sources 324–5 influencing factors 328–9 psychology 323–35 secondary care 333–4 service-delivery models 329–33 statistics 328–35 UK 324–35 US 327–9, 332 primary control, control theory 21–2, 28 Primary Mental Ability (PMA) 45 priming concepts, procedural memory 166, 172, 539 Problem Check List 419–20 problem solving 33–4 see also cognition problem-focused coping strategies 68–9, 88–90, 117, 270–1, 462–70 see also coping strategies procedural memory 166, 172, 376–7, 539 progressive muscle relaxation (PMR) 531–2, 589 progressive supranuclear palsy (PSP), concepts 175, 185–7 progressively lowered stress threshold hypothesis, dementia 573–4, 587–90 prostate cancer 65 protection issues 429–36 PSIGE see Psychologists’ Special Interest Group in the Elderly; Psychology Specialists Working with Older People PSMS test 388–91 psychic reality, concepts 474 psychoanalysis

INDEX assessments 475–6 caregivers 474–83 concepts 473–83 container-contained theory 474–5 couples 478–9 dementia 476–7, 528–9 examples 476, 477–8 group therapy 461–2, 479–81 infantile relationships 474–83 training 481–3 transference concepts 12–13, 474–83 psychodynamic psychotherapy 127, 457–8, 460–1, 473–83, 528–9 psychological abuse 312 see also abuse . . . psychological distress, family caregivers 1–2, 64–5, 191–5, 259–82, 313–14, 355, 422–3, 451–2, 549–64, 573–90 psychological interventions bereavement 75–6, 79, 87–90 dementia 523–41, 571–90 psychological problems anxiety disorders 1, 17, 63–4, 76–7, 97–108, 210–13, 370–1, 393–8, 523–4, 531–2, 571–90 assessments 97–108, 574–90 CAD 59, 63 dementia 145–54, 161–76, 571–90 depression 1, 11, 17, 63–5, 67, 69–70, 97–108, 210–13, 370–1, 457–70, 571–90 ID 343–6 LOP 133–40 neurodegenerative disorders 161–76, 185–95, 379–81 PTSD 121–9 range 1–2, 9–10 sleep 219–29 strokes 203–4, 212–14, 514, 516 suicides 100, 102–3, 111–18 psychological survival, concepts 23–9 psychologists see also service context; staff ageing 1–2, 8–12, 325–35, 595–609 care teams 595–609 challenging behaviour 574–90 constraints 333–5 death/dying 78–9, 351–6 generalist approach 331–3 historical background 8–9, 240–2 palliative care 356–7 personal challenges 2, 12–13, 249–50, 474–83 positive psychology 247–8, 415–16 primary care 323–35 psychoanalysis concepts 474–83

INDEX rehabilitation 513–18 responsibilities 246–7, 329–30, 331–3, 595–609 roles 246–7, 329–30, 331–3, 574–90, 595–609 specialist approach 331–3 stroke services 213–14 systemic interventions 492–501, 597–8 training 2, 8–13, 237–8, 241, 242–3, 327, 331–3, 345–6, 356–7, 481–3 transference issues 12–13, 474–83 UK 8–12, 326–35 US 9–10, 327–9, 332 values 237–50 Psychologists’ Special Interest Group in the Elderly (PSIGE) 8–11, 496 see also Division of Clinical Psychology Psychology Specialists Working with Older People (PSIGE) 8–11 psychopharmacology 461–2, 536–7, 589, 605 psychosis see also late onset psychosis concepts 133–40, 173, 188–9, 193–4, 379, 571–90 psychosocial aspects dementia 145–6, 148–54, 238–50, 394–8, 571–90, 597 illness outcomes 66–70, 515 LOP 136–9 strokes 212–13, 515 psychotherapy 127, 439–54, 457–70, 473–83, 528–9 see also cognitive-behavioural therapy couples psychotherapy 478–9 dementia 476–7, 528–9 group therapy 461–2, 479–81 PTSD see post-traumatic stress disorder QoL see quality of life QOLAS 420 qualitative interviews 23–4, 48–50 quality improvement cycles, care teams 606–7 quality of life (QoL) 6–7, 25–9, 57–70, 83–4, 150–4, 191–2, 271–3, 365, 387–405, 415–23, 452–4, 523, 532–41 see also well being . . . questionnaires, death anxiety 77 racism 7, 245–6 radical constructionism 490 RADL test 388–91 randomized controlled trials (RCTs) 524, 531–2, 534–5, 539–40, 562, 582–3 Rankin Scale 202–3 rapid eye movement (REM) 220–2

629 ‘rational deaths’, suicides 118 RBMT see Rivermead Behavioural Memory Test RCTs see randomized controlled trials RDRS-2 test 389–91 REACH 559–60 reading abilities 169–70, 369–70, 443 Reagan, Ronald 167 reality, systems theory 490–501 reality orientation (RO) 534–5 Reay, Alice Campbell 311–22 reconciliation needs, death 76–9 recovery factors 67, 505, 506, 507, 509, 510–12, 513–18 recreational settings 451, 525, 589 recruitment challenges 2, 8–9, 11–12 referrals 12, 69–70, 242–3, 328–9, 375–81, 474 reflecting methods, systemic interventions 497–501 regret, PTSD 125 rehabilitation 9–10, 63, 152–4, 206–14, 505–18, 532, 537–41 see also interventions computer-assisted training 516, 536 concepts 432, 505–18, 537–41 definition 506 dementia 152–4, 505, 523–41 empirical examples 516–17 factors affecting potential 515 future directions 517–18 general principles 505–7 guided recovery principles 506, 517–18 PD 505–18 psychologists 513–18 recommendations 516–17 response measures 517 special considerations 505, 507–18 strokes 505, 513–18 training 516–18 trauma 512–18 relapse prevention plans, CBT 464–5 relationships 7, 64–6, 69, 75–6, 79–90, 137–8, 148–54, 192–5, 238–50, 499–500, 580–3 mapping techniques 499–500 systemic interventions 489–501, 597–8 Relative Stress Scale 419–20 relaxation skills 128, 228–9, 318–19, 531–2, 589 reliability issues, tests 99 religion 7, 13, 27, 28–9, 76–7, 84, 237, 249, 271, 493–4 relocation issues, residential care 24–6, 63, 273–4, 279, 562–3 REM see rapid eye movement reminiscence work, dementia 532–4, 540, 589 remote memory, AD 164–5

630 residential care 2, 6, 23, 24–9, 63, 67, 76, 117–18, 273–4, 279, 289–305, 450–4, 527–41, 562–3, 574–90 see also nursing homes; service context abuse problems 289–90, 301, 481–2 activity levels 292 alternatives 291 concepts 2, 6, 23, 24–9, 63, 67, 76, 117–18, 273–4, 279, 289–305, 450–4, 562–3, 580–90 control theory 25–6, 63 country comparisons 294–5 critique 289–305, 574–90 depression rates 117–18, 290 dying 76 environmental improvements 293–7, 525–6 France 294, 297 ‘homeliness’ impressions 291–7 interaction levels 292 quality issues 289–305, 580–90, 597–8, 606–7 relocation issues 24–6, 63, 273–4, 279, 562–3 special care units 293–7 staff 292–305, 420–1, 527–41, 562–3, 574–90, 604, 607 statistics 290–1, 562–3 Sweden 294, 297, 303–4 ‘team spirit’ 28–9 training 301–5, 527–41, 581–90 UK 289–91, 294–8, 300–2, 450 US 24–8, 274, 294–6, 304 resistance issues 24–6 resources 5, 260–1, 268–82, 550–64, 577–80 respiratory diseases see lung diseases respite care, family caregivers 552, 555–6, 561–2 reviews, care teams 607–8 rheumatoid arthritis 59, 69 risk factors care teams 602 LOP 135–6 risk of harm 576 suicides 112–13 Rivermead Behavioural Memory Test (RBMT) 206–9, 369–70, 380–1 RO see reality orientation Roper-Hall, Alison 489–504 RTC-DAT scale 396–8 Rubinstein, Arthur 19 SAILS test 389–91 salt consumption, strokes 201–2 SAP see single assessment process tools SCAG scale 392–8 schemata, CBT 139–40

INDEX schizoid personality types 136 schizophrenia 133–7, 139, 281, 379 see also late onset psychosis science role 240–2 Scotland, suicide rates 112 screaming 571–2, 577–8, 583–90 screening tests 44, 163, 204–5, 211–12, 367–8, 387 see also tests screening uptake 59–60 Seattle Study 45, 531 secondary ageing, concepts 36–40, 44, 49–50 secondary care, primary care 333–4 secondary control, control theory 21–2, 28 SEIQOL 419–20 selective attention impairment 170, 172, 207–8, 443 selective optimisation and compensation (SOC), concepts 19–20, 27–9, 49–50 SELF scale 400 self-care see functional limitation self-concepts ageing 6–7, 17–18, 20–9, 62–7, 147–54 dementia 147–54 family caregivers 268–82 HIV/AIDS 149 self-disclosures, personal challenges 12–13 self-efficacy 23–4, 66–7, 70, 191–2 see also hardiness self-esteem frailty 26 illness outcomes 62–6 losses 26–7, 62–6 maintenance efforts 24–6 staff 298–9 self-evaluations cognition 48–9 concepts 28–9, 48–9 judgements 28–9 self-reports 103–4, 107, 416–17 self-transcendence, concepts 28–9, 76–7 SELFCARE 421–2 semantic dementia, concepts 173 semantic memory 37, 43–4, 165–6, 169, 173–6, 368–70, 376–7, 381 ‘senile dementia’ 429 senile plaques (SP) 162, 164 sensory losses 59, 99–100, 104, 136, 222, 275–6, 366, 514–15, 524–5 see also hearing . . . ; visual . . . service context 1–2, 9–11, 64–5, 82–3, 152–3, 191–5, 237–50, 255–82, 299–300, 313–20, 323–35, 341–6, 351–6, 373–5, 416–17, 419–23, 444, 451–4, 531–41, 549–64 see also family caregivers; primary care; psychologists; residential care

INDEX ID services 341–6 palliative care 351–6 PSIGE suggestions 10–11, 496 psychoanalytic interventions 475–83 values and diversity 237–50 service evaluations, care teams 606–7 Severe Impairment Battery 380–1 sexism 7, 245–6 sexual abuse 311–12 see also abuse . . . sexuality 7, 13 shared unconscious phantasy 478–9 sheltered housing 28, 450 short-term memory see also working memory concepts 43–4 side effects, drugs 99–100, 188–9, 572, 578–80 single assessment process tools (SAP) 399, 403–4 Sisyphus analogy, dementia 609 skill-learning concepts, procedural memory 166, 172, 176 sleep see also insomnia concepts 122, 219–29, 395–8, 571–90 hygiene 226 stages 220–3 slow wave sleep (SWS) 221–3 Small, Neil 351–9 smoking 58–61, 201–2 ‘snoezelen’ programmes 526, 588–9 SOAS scale 396–8 SOC see selective optimisation and compensation ‘social breakdown’ theory of ageing 23–4 social care services 5 social climate, staff 298–9 social constructionism 490 social context 145–54, 237–50, 261–3, 267–8, 276–82, 341–6, 439–54, 489–501, 571–90 dementia 145–54, 268–70, 341–6, 571–90 family caregivers 261–3, 267–70, 276–82, 444, 449, 451–4, 550–64 ‘person’ context 238–40 systemic interventions 489–501, 597–8 values 237–50, 447–54 social exclusion 2, 4–5, 6–7, 23–4, 69, 238–40, 246–7 Social GRACES 493–4 ‘social interest’ 28–9 social norms, cohort effects 446–7 social phobia (SP) 105–8 see also anxiety disorders Social Services, abuse problems 315–20

631 social support bereavement 84–5, 88–90, 113–15 concepts 69–70, 268–70, 448–9 dementia 149–54, 268–70 family caregivers 261–3, 267–70, 276–82, 550–64 LOP 137 PD 192–5 PTSD 122–3, 128–9 suicides 113–16 society ageing 5–8, 149–54, 452–3, 608–9 youth status 608–9 socio-cultural context see also cultural issues CALTAP 439–54 CCMSC 439–41, 445–6, 449–54 challenges 443–4 concepts 439–54, 469–70, 563, 608–9 current context 449–54 environmental issues 449–54 historical context 445–7 individual factors 440, 441, 444–5 interventions 439–54 maturation factors 440, 441–3 media stereotypes 452–3 socio-emotional selectivity theory (SST), concepts 20–1, 22–3, 442–3 sociograms 500 Socratic questioning, CBT 465–9 South Korea 258, 452 SP see senile plaques; social phobia Spain 326 spatial ability 36, 45, 47, 162, 163–4, 171–2, 205–7, 369–70, 507–9 special care units 293–7 special interest groups, background 8–12 spelling problems, AD 170 spiritual issues 7, 13, 27, 28–9, 76–7, 84, 237–40, 249, 271, 353, 355, 493–4 spouses 65–6, 79–90, 204–14, 478–9 see also family . . . SS-QOL 418–19 staff 2, 8–13, 213–14, 237–8, 241, 242–3, 301–5, 327, 331–3, 345–6, 356–7, 481–3, 492–3, 527–41, 562–3, 574–90, 595–609 see also psychologists; training ADQ 302–3 assessments 574–90, 598–601 attitudes 302–5, 357, 562–3, 580–90, 595–609 burnout issues 300–2 care teams 595–609 challenging behaviours 574–90 empathy gaps 607–8 environmental influences 298–305, 575–90

632 staff (cont.) family relationships 299–300, 562–3, 580–3 GHQ 300–1 influences 297–305, 575–90 interventions 302–3, 574–90, 595–609 job satisfaction 300, 302–5 management styles 298–9, 302–5 motivation issues 598–608 personal influences 298–305 residential care 292–305, 420–1, 527–41, 562–3, 574–90, 604, 607 self-esteem 298–9 social climate 298–9 stressors 297–305, 580–90 support issues 605–6 systemic interventions 492–501, 597–8 STAI see State-Trait Anxiety Inventory staircase treatment model, abuse problems 316–17, 320 State-Trait Anxiety Inventory (STAI) 107 Steele-Richardson-Olszewski syndrome see progressive supranuclear palsy stimulation and activity approaches, dementia 523–6, 528, 572, 589 Stockton scale 392–8 storage of information, memory 42–4 stress models 1–2, 40–2, 64–5, 68–9, 86–7, 191–5, 259–82, 313–14, 451–2, 549–51, 563, 573–4, 587–90 strokes 6, 11, 63, 64–5, 67, 77–8, 161, 201–14, 273, 324–5, 377, 418–19, 458, 500–1, 505, 513–18 assessments 202–4, 377, 418–19, 513–14 attention impairment 204–8, 513–14 causes 201–3, 513 classification 202–3 cognition 201–14, 513–15, 516–17 concepts 67, 161, 201–14, 377, 505, 513–18 country comparisons 213–14 definition 201 dementia 161, 201–14 depression 210–13, 514, 516 emotions 203–4, 210–13 family caregivers 204–14, 273 goal-planning models 213–14 language impairment 204–6, 513–14 memory 204–6, 208–9, 513–14 mood disturbance 210–13, 514, 516 motor symptoms 201–3, 513–14 neglect 206–7 psychological problems 203–4, 212–14, 514, 516 psychosocial adjustments 212–13, 515

INDEX recovery factors 67, 505, 513–18 rehabilitation 505, 513–18 risk factors 201–2 statistics 201–2, 458, 513–14 treatments 206–14, 513–18 visuospatial ability 205–7, 513–14 Stroop test 163, 171, 369–70 subjective health 48–50, 58 successful ageing, concepts 17–29, 49–50, 63–4, 147, 247–8, 508–9 suicides 100, 102–3, 111–18, 276 alcohol consumption 113–15 attempted suicides 111, 114–18 bereavement 80, 113–15 CBT 117 concepts 100, 102–3, 111–18 country comparisons 111–12 dementia 114 depression 100, 102–3, 114–18 deprivation links 112, 115 DSH 114–15 ethnicity links 112–13 family caregivers 276 gas supplies 112 gender issues 112–15 ideation 116–17 interventions 116–18 methods 113, 115 pain 113–14 personality types 114, 115 precipitants 113–16, 118 ‘rational deaths’ 118 repeated attempts 115–16 risk factors 112–13 social support 113–16 statistics 102–3, 111–18 support groups, family caregivers 281–2, 550, 553–5, 558, 563–4 Sweden 2–4, 294, 297, 303–4, 311–13, 326 Switzerland 326 SWS see slow wave sleep syntax problems, AD 168, 172 systemic interventions advantages 492–3 approach distinctions 489–96 concepts 489–501, 597–8 conceptual tools 493–6 convening considerations 498–501 family therapy 496–501 mapping techniques 499–500 method distinctions 489, 496–9 reflecting methods 497–501 Social GRACES 493–4 staff 492–501, 597–8 systemic interviewing 500–1 teams 496–501, 597–8

INDEX technique distinctions 489, 499–501 therapist positioning, intent and influence 493–5 VT 498–9, 526–9 systemic interviewing, concepts 500–1 systems theory, concepts 489–91 taboo topics, range 13 Tavistock Clinic 477, 482 ‘team spirit’, residential care 28–9 teams 496–501, 595–609 see also care teams; groups telemedicine services 555, 559 terminology critique, ageing 241–2 tertiary ageing cascade model of ageing and cognitive outcomes 36–40 concepts 36–7, 39–40, 49–50 Test of Everyday Attention 207, 369 tests 36–50, 98–100, 161–76, 204–7, 363–81, 385–407, 577–8 see also assessments; neuropsychological assessments cognition 36–50, 163–72, 204–5, 363–81, 385–407, 577–8 concepts 99, 363–81, 385–407, 577–8 dementia 1–2, 161–76, 363–81, 385–407 glossary of measures 405–7 memory 36, 42–4, 48–50, 204–6, 364–81, 385–407 noncognitive tests 370–1, 386–405 reliability issues 99 screening tests 44, 163, 204–5, 211–12, 367–8, 387 selection criteria 367–71 types 367–71 validity issues 99 Theory of Mind ability (TOM) 173 therapist positioning, intent and influence, systemic interventions 493–5 third age of life 6 thyroid dysfunction 100, 343 TIA see transient ischaemic attacks total quality management (TQM) 597–8 TQM see total quality management Trail Making Test 163, 171, 369–70 training 2, 8–13, 213–14, 237–8, 241, 242–3, 301–5, 327, 331–3, 345–6, 356–7, 481–3, 516–18, 527–41, 551–64, 581–90, 602–4 capacity/consent considerations 435–6 care teams 602–4 challenges 2, 481–3 cognitive training 532, 535–7 critique 2, 8–11, 237–8, 241, 242–3, 327, 345–6

633 family caregivers 277–8, 551–64, 581–90 historical background 8–9, 241 personal challenges 12 psychoanalysis 481–3 rehabilitation 516–18 residential care 301–5, 527–41, 581–90 suggested syllabus 9 UK 8–9, 11, 213–14, 327, 332, 481–3 US 10, 327–9, 332 workshops 602–4 transference concepts 12–13, 474–83 transient ischaemic attacks (TIA) 201, 377 see also strokes trauma 11, 59, 81, 83–4, 88–90, 105–8, 121–9, 138–9, 505–18 see also post-traumatic stress disorder AD 513 concepts 121–9, 138–9, 505–18 dementia onset 513 LOP 138–9 neurobehavioural consequences 511–13 outcomes 510–13 pathophysiology 509–13 recovery factors 510–12, 517–18 rehabilitation 512–18 treatments 127–9, 505–18 types 125–6 treatments see also interventions abuse problems 316–20, 481–2, 553, 582 adherence statistics 61–2 antidepressants 117, 461–2, 474 anxiety disorders 1, 190, 458–71, 531–2 behaviour-focused approaches 394–8, 523, 529–32, 552, 571–90 behavioural therapy 89, 190–1, 461–2, 552, 557–62 bereavement 88–90 CBT 9–10, 35, 69–70, 117, 127–9, 139–40, 190–2, 225–9, 279, 325, 327–9, 457–70, 530–1 cognition-focused approaches 523, 532–41 cognitive therapy 89, 228–9, 318–19, 460–1 dementia 41, 148, 152–4, 328–35, 345–6, 476–7, 505, 523–41, 571–90 depression 1, 11, 69–70, 98–9, 117–18, 190–1, 210–13, 453, 457–70, 473–83, 580 EMDR 127–9 emotion-focused coping strategies 68–9, 88–90, 270–1, 523–9 family caregivers 275–82, 549–64 group therapy 461–2, 479–81, 525–6, 552, 560, 596–7 insomnia 225–9 LOP 133, 139–40

634 treatments (cont.) one-behaviour-syndrome-one-treatment paradigm 572–4 PD 187, 188–95 pharmacotherapy 461–2, 536–7, 589, 605 primary care 326–35 psychoanalysis concepts 473–83 psychotherapy 127, 439–54, 457–70, 473–83, 528–9 PTSD 127–9 stimulation and activity approaches 523–6, 528, 572, 589 strokes 206–14, 513–18 VT 498–9, 526–9 walking benefits 60–1, 529–30, 580, 589 Trethowan report 8 trust 128–9 Twining, Charles 429–36 types, ageing 36–40 UK abuse problems 311–13, 319–20, 481–2 age discrimination 10–11, 153 assessments 386–405 capacity/consent considerations 430–6 clinical psychology 8–12, 326–35, 595–6 legal background 430–6 Mental Health Act 433–4 NHS 9–10, 62, 69–70, 213–14, 289–90, 297, 324–35, 386, 606–7 PD 186–7, 195 pensions concerns 5 population statistics 2–4 primary care 324–35 psychoanalysis 476–83 residential care 289–91, 294–8, 300–2, 450 strokes 201–14 suicides 111–17 support groups 555, 563–4 training 8–9, 11, 213–14, 327, 332, 481–3 user/carer participation 153, 213, 239–40 United Nations 2 University of the Third Age (U3A) 6 unmet needs hypothesis, dementia 573–4, 575–90 US abuse problems 311–13, 319–20 China 8 clinical psychology 9–10, 327–9 death/dying 78, 351–2 family caregivers 257–63 nursing homes 24–8, 274, 294–6, 304 population statistics 2–4, 257–8 primary care 327–9, 332

INDEX residential care 24–8, 274, 294–6, 304 strokes 213 suicides 112 training 10, 327–9, 332 user/carer participation 153 user/carer participation 153, 213, 239–40, 597 validation therapy (VT) 498–9, 526–9 validity issues, tests 99 values 237–50, 447–54 variance factors, older people 6–7 verbal ability 36, 45, 163–72, 380–1 ‘victim to offender’ factors, abuse problems 314–15 virtual environments 209–10 visual grasping 175 visual impairment 59, 99–100, 104, 514–15 visuospatial ability 36, 45, 47, 162, 163–4, 171–2, 174–6, 205–7, 369–70, 507–9, 513–14 volunteering activities 5 VT see validation therapy vulnerability-stress models, schizophrenia 136–7 WAIS see Wechsler Adult Intelligence Scale walking benefits 60–1, 529–30, 580, 589 see also exercise wandering behaviour 395–8, 571–90 wartime experiences, PTSD 121–9, 138 WAS see weekly activity schedules WCST see Wisconsin Card Sorting Test Wechsler Adult Intelligence Scale (WAIS) 44–5, 171–2, 369–70, 378 weekly activity schedules (WAS), CBT 464, 468–9 well being (quality of life) 6–7, 25–9, 57–70, 83–4, 150–4, 191–2, 271–3, 365, 387–405, 415–23, 452–4, 523, 532–41 activity limitations 64 assessments 387, 415–23 definition 63–4, 415–16, 418 dementia 150–4, 387–405, 523, 532–41 enhancement factors 64, 69, 153 family caregivers 271–2, 419–23, 550–64 reduction factors 64, 271–3, 452–4 self-reports by proxy 416–17 WHOQOL 63–4, 418–19 WHO . . . see World Health Organisation . . . who-where-when questions, assessments 576–7 Wisconsin Card Sorting Test (WCST) 171, 174, 369–70 wisdom 28 wish to live, death/dying 78–9, 89–90 withdrawal responses 23, 27 WMS tests 369, 377–8

INDEX Woods, Bob 1–14, 111–19, 289–309, 415–27, 523–48 working memory 37–50, 127–8, 167, 369–70, 443, 508–9 see also short-term memory workshops 602–4 World Health Organisation (WHO) 58–9, 63–4, 76, 112, 145–6, 151, 323–5, 335, 353, 387, 415–16, 418–19, 457–8, 509–10, 537 Index compiled by Terry Halliday

635 Worry Scale (WC) 107 writing problems, AD 170 ‘young old’ 244 Young Schema Questionnaire 139–40 youth status, society 608–9 Zarit Burden Scale 419–20 Zarit, Steven H. 255–88