Broken Connections Part 1

BROKEN CONNECTIONS

The little boy and the old man

Said the little boy, “Sometimes I drop my spoon.” Said the little old man, “I do that too.” The little boy whispered, “I wet my pants.” “I do that too,” laughed the little old man. Said the little boy, “I often cry.” The old man nodded, “So do I.” “But worst of all,” said the boy, “it seems Grown-ups don’t pay attention to me.” And he felt the warmth of a wrinkled old hand. “I know what you mean,” said the little old man. Shel Silverstein From: A light in the Attic, poems and drawings by Shel Silverstein, HarperCollins Publishers, 1981

LIDUIN SOUREN & EMILE FRANSSEN

Broken Connections ALZHEIMER’S DISEASE PART I—ORIGIN AND COURSE THE WORLD OF THE PATIENT

SWETS & ZEITLINGER B.V. PUBLISHERS LISSE BERWYN, PA

This edition published in the Taylor & Francis e-Library, 2005. “To purchase your own copy of this or any of Taylor & Francis or Routledge’s collection of thousands of eBooks please go to http://www.ebookstore.tandf.co.uk/.” Library of Congress Cataloging-in-Publication Data Souren, Liduïn [Verbroken verbindingen. English] Broken connections: Alzheimer’s disease/Liduïn Souren & Emile Franssen. p. cm. Includes bibliographical references. Contents: pt. 1. Origin and course—pt2. Practical guidelines for caring for the Alzheimer patient. ISBN 90 265 1334 8 (pt 1).—ISBN 90 265 13712 (pt. 2) 1. Alzheimer’s disease. 2. Alzheimer’s disease— Patients—Care. I. Franssen, Emile II. Title. [DNLM: 1. Alzheimer’s disease. WM 220s724v 1993a] RC523.S6813 1993 616.8′31–dc20 DNLM/DLC 93–25579 for Library of Congress CIP CIP-gegevens Koninklijke Bibliotheek, Den Haag Souren, Liduïn Broken connections: Alzheimer’s disease/Liduïn Souren & Emile Franssen; [transl. from the Dutch: R.M.J.van der Wilden-Fall].—Lisse [etc.]: Swets &: Zeitlinger Pt.I: Origin and course, the world of the patient. Vert van: Verbroken verbindingen: de ziekte van Alzheimer. Dl. I: Ontstaan en verloop. Amsterdam [etc.], 1993 Met lit. opg., reg. ISBN 90-265-1334-8 NUGI 759 Trefw.: ziekte van Alzheimer Translation: R.M.J.van der Wilden-Fall, MBE, MA (Oxon) Cover design: Rob Molthoff, LineaForma, Alkmaar Cover printed in the Netherlands by Casparie, IJsselstein © Copyright 1994, E. & L.Franssen Souren This material may not be used without written permission of the copyright owners. © Copyright 1994, Swets & Zeitlinger B.V.Lisse 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, or otherwise, without the prior written permission of the publisher. ISBN 0-203-33022-6 Master e-book ISBN

ISBN 90 265 1334 8 (Print Edition) NUGI 759

TO OUR PARENTS

FOREWORD Twenty years ago, Alzheimer’s disease was known to only a handful of professionals. It is now a familiar term in most households in the United States. No disease is more dreaded. The loss of cognitive function associated with Alzheimer’s disease represents the worst fear of old age. Alzheimer’s disease conjures up the image of a loved elderly relative, alive but unable to participate in even the rudimentary activities associated with family life. The disease poses the burden of long and arduous caregiving and constitutes the most profound personal and family tragedy. It taxes the skills of the most experienced and dedicated professional and raises the most basic questions about the benefits and burdens of care. Over five million Americans are afflicted withe Alzheimer’s disease. Yet an astounding number of health care professionals and family caregivers lack even rudimentary information about the disease: its underlying cause, the progression of symptoms, and perhaps most importantly, strategies for interacting with patients and their families. Very few comprehensive sources of information about Alzheimer’s disease are available to family members and health care professionals. This text by Liduïn Souren and Emile Franssen is a major step in rectifying this deficiency. The impetus for the book came from the autors’ familiarity with the care provided in residential home settings and in nursing homes in the United States and in Holland. Liduïn Souren has extensive experience as a teacher and consultant in geriatric nursing. Emile Franssen, a neurologist, is internationally recognized for his research and clinical expertise in dementia and Alzheimer’s disease. In their capacity as researchers, consultants and educators, they have observed that professional and non professional care givers working with patients with cognitive disorders lack basic information about strategies for managing the behavioral manifestations of Alzheimer’s disease. They have found staff highly responsive to their suggestions for managing patients. And, most importantly, they have seen first hand the improvements which can be achieved when patients’ dysfunctions are adequately assessed, understood and remediated. The book, which is also published in the Netherlands, is divided into two parts. Part I explores the notion of dementia and its causes. As can only be done when one has extensive knowledge, the authors are able to distill the essence of the disease and present it’s pathophysiology in a form which is at the same time comprehensive and easy to understand. Appropriately titled Broken Connections, Part I juxtaposes the behavioral manifestations of Alzheimer’s disease with the underlying neurologic pathology. So, for example, absent-mindedness, disturbances of day-night rhythm and “sundowning” are explained within the context of the concomitant neurologic deficits. Part II of Broken Connections focuses on practical guidelines and is meant for the primary caregiver of Alzheimer’s patients. The content delineates four stages which represent the progressive loss of function associated with the disease. For each stage, the authors provide a scheme of practical suggestions for managing socio-recreational function, household and daily personal care and hygiene. Included in this LIMIT scheme

is a LIMIT test which poses questions which objectively determine what patients are able to do. The LIMIT scheme offers practical suggestions for preserving existing function. In Stage I of the disease, for example a discussion about handling money provides questions to determine the degree to which patients can handle money: can the patient distinguish between less, much and more? Can he name coins and bills and distinguish the different values? Specific suggestions for helping patients manage money include encouraging the patient to pay at the check-out and sort change at home or stack similar coins. The book is perfused with the authors’ enthusiasm for improving care for patients with Alzheimer’s disease. Their intent is to tell the reader that the patients’ behavior can be understood and that there exists a wide repertoire of activities which can preserve the patient’s function and slow the slope of decline. By sharing their own and other’s expertise, this book diminishes the isolation of countless millions of caregivers faced with the daily task of improving the lives of Alzheimer’s patients. Mathy Mezey, Ed.D., F.A.A.N. Independence Foundation Professor of Nursing Educaton New York University

PREFACE The authors of this book are both very concerned with the lot of Alzheimer patients and their immediate caregivers. Through her work as a tutor of nursing and geriatrics Liduïn Souren has repeatedly come across many unanswered questions from those most closely involved in caring for the patients. Her husband, Emile Franssen, is engaged on scientific research into the neurological aspects of Alzheimer’s disease. From the background of his know-how as a neurologist/psychiatrist he explains the working of the brain and the connection between the brain and behavior in a readily understandable way. Many of the questions concerning the uncomprehended behavior of the Alzheimer patient come up for discussion and become clear to the attentive reader. Attention is also paid to psychological factors which influence behavior. Part II deals comprehensively with the “treatment”. On the basis of the theoretical model from Part I indications are given on the way in which the patients daily life can be structured. Clear and conveniently arranged schemes show how the caregiver can approach the patient in a manner which makes use of the possibilities still available, whereby life becomes more bearable both for the patient and also for the caregiver. Amongst the many books on these subjects which have appeared during the last few years, these two books certainly deserve a place for their clarity, comprehensiveness and the lucidity of the schemes. The DUTCH ALZHEIMER FOUNDATION is very pleased that these two compatriots, who live and work in New York, have made their experience and knowledge accessible to us. H.W.ter Haar, M.D., Secretary Dutch Alzheimer Foundation A.S.H.van Moll, Former Director Dutch Alzheimer Foundation

CONTENTS Introduction

xii

CHAPTER 1 DEMENTIA

1

CHAPTER 2 ALZHEIMER’S DISEASE

15

CHAPTER 3 CHANGES IN BEHAVIOR

26

CHAPTER 4 ACTIVITIES AND THE SENSORI-MOTOR SYSTEM

52

CHAPTER 5 PHASES IN CAREGIVING

80

CHAPTER 6 PARTING

94

Index

103

Bibliography

109

INTRODUCTION There are few diseases which have emerged from obscurity into such prominence as Alzheimer’s disease. Fifteen years ago the name Alzheimer was known only to a handful of medical specialists. Now there is hardly anyone who has not heard it mentioned. Much of what until comparatively recently was called senility or senile dementia is now known as Alzheimer’s disease. In the United States of America it is estimated that about four million people suffer from this illness. In the year 2050 that will amount to approximately fourteen million. It is mainly a disease of the elderly. The chance of getting this disease increases rapidly with advancing years. From the age of 65 onwards it occurs ten times as often as between the age of 55 and 65. From the age of 75 it occurs six times as often as between 65 and 75 and according to some statistics almost one in two people may suffer from this disease after the age of 85. It is gradually becoming apparent that with the increasing aging of the population, the number of cases of this illness will assume catastrophic proportions in the future. In our ever changing Western society with its specialized functions older people often suddenly come to a dead end on retirement. Loss of economic productivity leads to loss of functionality and consequently to loss of communication. The marriage partners are thrown back on one another to an increasing extent. Thus when one of the partners is afflicted by Alzheimer’s disease, the consequences are disastrous for both partners. They suffer in isolation, the suffering accentuated by feelings of shame. The emotional burden for the partner-caregiver is very heavy. The illness ravages both the patient and the caregiver. In addition there is the long duration of the disease, which can sometimes take up to a fifth of the patient’s life. While every illness is accompanied by temporary or permanent loss of certain functions, in the case of Alzheimer’s disease it is the total functioning as a person which is lost. As a result of a degenerative process in the brain, nerve cells become gradually incapable of communicating with one another. The disintegration of the brain tissue leads to a breaking of the communication lines which anchor a person in his own time and environment. His mind goes adrift. Communication with other people and even with his own body becomes disturbed. There is total dislocation. The patient slowly but inevitably regresses to the functional level of an ailing, helpless newborn baby. What can be done to help in this situation? For most caregivers Alzheimer’s disease represents a completely incomprehensible process. Knowledge of the pathological process and of the resultant changes which occur in the brain is a basic requirement for better understanding. For this reason detailed attention has been paid to this aspect in Part I of Broken Connections. The loss of functionality takes place in a comparatively predictable sequence: what was last acquired is often the first to be lost. A comparison of this loss of function with the normal development of cognition and praxis in a child makes this clear. Even the space of time within which certain functions are lost in this disease is fairly predictable. If

the caregiver has sufficient insight into the situation, he or she is better able to judge whether and when certain measures have to be taken with regard to the help needed at home or admission to a nursing home. It is possible to plan for the future now that one knows what is going to happen. The gradual loss of cognitive functions is one of the causes of certain behavioral disturbances which occur in this disease. These disturbances are less predictable than the loss of function. Each individual patient reacts differently to the loss of himself. Temperament, character and previous history also play a part here. It is most important for the caregiver to be aware of these factors and to have insight into the way in which the patient experiences his ever shrinking world and tries to make sense of it. Only if the caregiver is to some extent capable of sharing in what the patient is experiencing, is it possible for their communication to remain intact. Only if communication exists, is it possible to make sense of the situation. Only if it is possible to make sense, can something be meaningful and only then is there the strength to carry on. Cut and dried answers for specific situations cannot usually be given. But the caregiver, who is acquainted with the way in which the patient experiences his world, will ask himself: “What would I do in this situation if I were the patient?” The caregiver guides the patient as it were on the long journey to the final destination. If the guide has a description of the route, the patient is less likely to go astray. Broken Connections part II can be seen as an itinerary and timetable, geared to the practice of daily life. It is above all intended for the patient’s primary caregiver. It is based on the standpoint that the patient must remain as active as possible for as long as possible. It is after all the confrontation with the loss of his independence and the experience of being treated as an infant which the patient finds difficult to cope with. The LIMIT scheme gives an overview of the functional capacity of the patient still remaining at each successive stage of the illness. The emphasis is on what the patient is still capable of doing: the limit of his or her capacity. In this scheme the illness has been classified for the caregiver in four stages, each of which is demarcated and characterized by the loss of certain self-care functions. Suggestions are given as to how to keep the patient as functional as possible and how to be constructively occupied with him. The user must realize that it is a question of potential activities. In reality not every patient has of course exactly the same capacities. The activities discussed are intended as guidelines for the caregiver in his daily contact with the patient. Each individual patient and each indiviual caregiver have their own preferences. That is why concrete alternatives have been provided as much as possible. Moreover, it should be noted that when a patient can still—or can no longer—perform a certain activity, it does not necessarily mean that he must be classified in a certain stage. The LIMIT test is a separate tool which enables the caregiver to determine the patient’s degree of ability to manage on his own. In writing these two books the authors have drawn on their joint practical experience in the Netherlands and in the United States and on their participation in longitudinal research. In a project, which has already been in progress for more than ten years and embraces some five hundred Alzheimer patients, each patient is followed from the beginning of the disease right up to the end of his life. The authors thus had the privilege of many personal encounters with Alzheimer patients and their caregivers, in the clinic, at home, in rest homes and nursing homes. Although the Functional Assessment Staging of

Alzheimer’s disease (FAST) of Reisberg et al., whose work is extensively quoted in the Bibliography, (see Part I, Bibliography) pages 157 ff, has been used as the starting point, the authors express their own views and ideas in these books. Purely from practical and conventional considerations the patient and the caregiver are consistently referred to in this book as ‘he’. The alternating use of the male and female pronoun does not make for greater clarity. Unfortunately language does not provide any other possibility. This book is dedicated to the Alzheimer patients and their caregiver(s). They deserve everyone’s admiration and active support. It is of the utmost importance that their lines of communication with the rest of us are not broken. Acknowledgement We want to extend our heartfelt thanks to the many patients, their spouses, relatives and caregivers whom we had the privilege to meet and to whom this book is dedicated. We also thank our collegues and friends in Holland and the United States, as well as our relatives for their interest and moral support. In particular we want to recognize dr. Barry Reisberg, Emma Shulman and Gert Steinberg. The Dutch Alzheimer Foundation and in particular its present director Harry Crielaars and its past director Ton van Moll have given us invaluable and continuing support in our endeavor. A special word of thanks goes to our personal friend Rachel van der Wilden-Fall. The English translation would not have been possible without her. Finally we thank the staff of Swets & Zeitlinger, Lisse, The Netherlands, for their guidance during the production of the book. New York, March 1993 Liduïn E.M.Souren & Emile H.Franssen

CHAPTER 1 DEMENTIA 1.1. INTRODUCTION We begin our life within the security of the womb. In these protective surroundings the human being lies in an attitude which he will later adopt every night in his sleep. We are born with a helpless body, only capable of vague feelings of comfort and discomfort, without awareness. The baby learns in sequence: to hold up its head, to smile, to sit up, to crawl, to stand and to walk, and at the end of the first year speech begins to develop. The infant next learns to become toilet-trained. The toddler gradually learns to wash and dress himself. In the young child the development of the intellect and of the social skills begins to get underway, together with character formation. It is a long process, which is necessary in order to be able to hold ones own later on as an adult in society. At a given moment the apex of physical achievement has been attained. Then comes the beginning of the downward phase, with a slow decline in all the physical functions. In this phase changes take place in the body and thus also in the brain. All functions slow down. Adjusting to the demands of life calls for more energy and time. The ‘third’ age has now been reached, in which the physical and mental functions decelerate but are still intact. As we shall see later on, with Alzheimer’s disease—the most frequently occurring form of dementia—these functions get lost again one by one, in the reverse order from the one in which they developed. The slowing down of mental functions in the third age is often interpreted by the aging themselves as deterioration of their memory. Nevertheless, the majority of people over sixty five exhibit no significant intellectual decline; memory, orientation, logical thinking and judgment remain for the most part intact. Mental and physical retardation with advancing age can be decreased to a considerable extent by remaining psychosocially and physically active. To achieve this a positive attitude to life is an essential requirement. However, older people are often more inclined to adopt a wait-and-see attitude than younger people. In extreme cases this leads to indecision and loss of activity. Too much emphasis on real or imagined limitations resulting from growing older leads to self-pity and loss of social contact. That is why it is so important to stress the things that a person can do, if the person’s life style is to be maintained as long and completely as possible. By remaining mentally and physically active, both in and outside the home, people get appreciative and rewarding reactions from relatives, friends and others, which reinforce their self-respect. There is no need to emphasize the fact of being old. Old age comes of its own accord!

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Better to wear out than to rust out Although many people look forward to the period after their retirement, it often turns out to be a disappointment to them. It is apparent over and over again that preparation for this phase, together with the partner, is most important for the quality of life in the years ahead. Making distinct agreements with each other on such things as the division of domestic tasks and maintaining a certain degree of regularity can be aids to structuring everyday life. Retirement is often the beginning of a shrinking circle of friends. For many people sixty five is still a magical age, an age at which it is evidently necessary for ‘rest’ to take over. In this context rest means both mentally and physically taking things more easily. But the proverb says: ‘better to wear out than to rust out’. Rest soon makes for physical, mental and social decline. Many of the over-65s lapse into looking back on the past. The challenge of active life is evidently over. It is noticeable that after the age of sixty five there is a decline in the number of people participating in courses and clubs. It is forgotten that older people are also capable of learning new things, even though they usually need more time to do so than younger people. Older people must also remain active in the community. They need a goal in life. And the community needs their experience. Physical symptoms can influence mental functioning. They are often mistakenly regarded as a necessary evil of growing old and no attention is paid to them. However, the doctor should be consulted in good time when symptoms occur. Continuing pain or (over-) tiredness, shortness of breath, dizziness, drowsiness, bad sight, bad hearing or tenseness can lead to anxiety, gloominess and loneliness. For the older person regular, varied meals and adequate physical exercise are of great importance. By actively and purposefully keeping on the move many physical complaints and disorders can be prevented. Moreover, it provides opportunities for making contacts, which in turn stimulates the mental functioning. Falling is frequently a problem, since with increasing age the body balance in movement often decreases. Because the bones are more brittle, a fall often leads to bone fractures, which necessitate admittance to hospital, nursing home or old people’s home. Helplessness, dependency and isolation from the outside world then threaten the older person’s existence and lead to a decrease in mental resilience. For older people a move to another neighborhood, town or country is also often accompanied by problems. Having to get used to a new house, new neighbors, other shops and traffic situations, as well as making new friends, all call for a great deal of energy. Old friends visit less frequently. Moreover, older people are frequently dependent on others for their mobility. They hesitate to ask someone else for help because they don’t want to be a burden to anybody. Loneliness is all too often the result. 1.2. MISCONCEPTIONS ABOUT DEMENTIA The normal retardation of mental functions, which accompanies the third age, is often too soon interpreted by younger people as a sign of being absent-minded or senile. They have

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a stereotype picture of older people in mind, which is seldom derived from their own experience and observation, but is based on unsupported traditional views, which certainly no longer apply at the present day. In colloquial speech physical and mental retardation in older people is often emphasized. “Can’t you remember that any more?” “I’ve already told you that four times.” “You really are getting very forgetful!” “Write it down, then you won’t forget it again.” “He’s so senile.” By linking the word demented with old, being elderly acquires a negative connotation in the eyes of younger people. Misconceptions such as “Mental deterioration is part of growing older” or “Old people go demented”, are not based on the young peoples own observation. They are generalizations, which frequently lead to older people being subjected to patronization, paternalism and even being treated as an infant. Understandably that evokes a negative reaction on the part of the older person. It may lead to petulance, recalcitrance or depression, which then serve as proof to the younger person that he was right after all. Once established misconceptions are difficult to alter. Nevertheless, the correction of these miscomprehensions about old age is the first requirement to achieve a better understanding of what dementia really is. An over-optimistic picture of dementia, similarly devoid of any basis of reality, is also to be found: caregivers-to-be quite often have the idea that the demented are always grateful and touchingly good-natured. They compare these people with children or babies. That naturally leads to disappointment. Misconceptions about dementia often result in stress in the person caring for the demented. Particularly if the caregiver is the partner, then he or she expects more gratitude from the patient. A frequently heard complaint is: “I spend the whole day looking after him and there’s not a single sign of gratitude, not even a smile”. But someone who is demented does not have the capacity to express gratitude or appreciation in the way a healthy person does. The demented patient has no insight into his or her own state of helplessness. Sometimes he no longer even knows who is caring for him, even when that is his life companion. Finally he forgets who he is himself. Thus a patient suffering from dementia cannot be grateful in the sense in which the healthy person understands gratitude, since he or she is incapable of insight into his or her own circumstances. To be grateful is to recognize and acknowledge that one has experienced something good from someone else. If you are unable to realize and to recognize, then you are also unable to acknowledge. But at the emotional level the patient can indeed experience friendliness, affection and sympathy directed towards him. The way he is treated may make a pleasant or an unpleasant impression on him. If the caregiver is not kindly disposed to him and handles him roughly, then he will certainly notice it. His reaction is instinctive. If a demented patient is at ease with the caregiver, is consequently calm and sometimes smiles, then that is his token of appreciation. An older dementia patient is sometimes compared to a child or a baby. This is a lame comparison which does not tally with reality. It only applies with regard to the functional level and then only partially. The baby is small, it can be picked up and hugged, played with to make it laugh. The baby’s age and outward appearance encourage people to do so. In the case of demented patients naturally none of this applies. In their behavior they may sometimes give the impression of helpless children or babies; but in their outward appearance they remain adults. This arouses conflicting feelings in the caregiver and the

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partner. When the patient is seen as a child or baby, then he is often approached as such. However, a demented person has a whole life history behind him. With all his experience and his adult body he now has to trace the whole way back. As an adult he has to return to the limitations and powerlessness of being a child. But now without the excitement and the enthusiasm of the child discovering the world around him. The developing child and those involved in bringing him up are delighted every time he has learnt something new and has thus overcome certain difficulties. The patient suffering from dementia and those around him experience every step further back towards the dependence of childhood as something extremely negative. Seen from the perspective of his personal history as an adult, every loss of function represents a further sinking back into the impotence of a sick child with no future, to be compared with the total helplessness of a crippled baby. For the child time cannot pass quickly enough, he is full of expectations of the future. For the aging dementia patient there is only a gradual slowing down, which finally culminates in a total stiffening of body and mind. Whereas we feel ourselves responsible to a certain extent for the development and growth of our body, we consider our mind much more as a product of hard and lifelong work. Looking back over the panorama of life, now with the capacity to see everything in a new perspective, can lead to one of the most valuable possessions which life can give us after hard work: wisdom. This most valuable reward for all our endeavours is denied to the demented. 1.3. NORMAL SYMPTOMS OF ADVANCED AGE (INVOLUTION) ‘A hundred disorders has old age’, or in other words, advanced age is accompanied by defects. A defect is the absence of something which was originally present, an imperfection, a weakness, a loss, an infirmity. The defects of advanced age are imperfections in certain physical functions which are a result of growing older, but which are not all necessarily always present in all older people. One person is affected earlier, another not until later. These defects can concern all the functions of the body and they also influence the mind and the feelings. A defect is not the same as a disease. The word defect usually indicates a perceived loss of one or more functions, which is comparatively stable. A disease is the impairment of the function of one or more organs as the result of a specific cause. A disease affects functioning in its totality to a greater extent. It is a process which follows a certain course. A disease can result in a complete recovery with all the impaired functions regained, or to a partial cure with lasting defects. With older people diseases much sooner result in lasting defects than with younger people. The aging body—and thus also the brain—has less reserves and less resilience than the young body. The healthy parts can no longer fully compensate for the parts damaged by the disease. All the organs and parts of the body are affected by the process of growing older, sometimes more, sometimes less, with the resultant loss of function. This gradual and partial decline in functions and capacities, which accompanies the aging process, is known as involution.

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Physical changes As people grow older, a loss of muscular tissue occurs, which can be easily observed on the inside of the upper arms and the legs. The muscles there are thinner and flabbier. The result of this loss of muscular tissue is that muscular movements are less powerful and can only be maintained for shorter periods. In the respiratory organs the pulmonary tissue becomes less elastic. Thus during exhalation some of the inhaled air remains in the alveoli, which are then unable to deflate fully The respiratory muscles then have to do extra work to ensure that sufficient air can still be exchanged. Also the mobility of the rib cage and diaphragm decreases, whereby the respiration becomes less deep and the ventilation less effective. The breathing becomes shallower and faster. As a result of these causes the carbon dioxide content in the lungs increases in relation to the oxygen content and this means that less oxygen can be absorbed into the blood via the lungs. Even with a slight temporary drop in the blood pressure, that can lead to fatigue, dizziness, shortness of breath and drowsiness, since there is a temporary shortage of oxygen reaching the brain. When of sufficient severity, this has a negative effect on the brain functions and consequently on the ability to think. The fatigue is increased by the extra exertion of the auxiliary respiratory muscles, which can be observed from the hunched shoulders and tense neck muscles, which are consequently still less mobile. Narrowing of the blood vessels in the process of growing older leads to a decrease in the blood flow and in the supply of oxygen to the organs, with the resultant loss of function. The heart loses muscular tissue, which is replaced by interstitial tissue, and can therefore less efficiently pump oxygen-rich blood to the organs. The blood sometimes already has a diminished oxygen content on account of the less effective lung function. Then it only takes the occurrence of slight anemia for the oxygen supply to the organs, including the brain, to become inadequate. There are also often disturbances in the heart rhythm which can lead to diminished blood circulation in the brain. This sometimes results in fainting. The digestive system also undergoes a change; with advancing age nourishment is less efficiently absorbed into the blood and into the tissues. Change in the excretion of waste products, with constipation as one of the frequently occurring results, can in turn lead to a loss of appetite. Both a shortage of certain types of nourishment, such as proteins, minerals and vitamins, as well as an excess of, for example, salt, saturated fats, eggs and alcohol, can contribute to deterioration of the general physical and mental condition. Nourishment which is adjusted to the needs of the aging body relieves the burden on the pancreas, which produces less insulin as a result of the aging process. Insulin is necessary for glucose to be absorbed from the blood into the cells. Glucose is the most efficient fuel for the cells. Glucose is a carbohydrate. Carbohydrates occur in food such as rice, sugar, bread, cake, macaroni and potatoes. The glucose undergoes combustion in the cells, whereby warmth is generated together with other forms of energy, which are necessary to keep the metabolic process running. Glucose is virtually

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the only fuel which can be used by the brain cells. The cells of other organs can also make use of fats for fuel. Not all the carbohydrates absorbed into the body are needed to supply energy. The body turns the excess of carbohydrates into fat, which is stored in special fat cells under the skin and in the thoracic and abdominal cavities. The number of fat cells increases with advancing age. The greater the excess weight, the greater the number and volume of the fat cells in the body. By taking exercise and eating with moderation the amount of body fat decreases, since it is used for combustion. The insulin production is then usually sufficient to transport the sugar circulating in the blood to the muscles and organs where it can be used. A lower consumption of carbohydrates means a decrease in the supply of glucose in the blood and thus less of a burden on the insulin-secreting cells in the islets of Langerhans within the pancreas. If the pancreas cannot produce enough insulin for the sugar in the blood to be absorbed into the cells, then the blood sugar content rises. The kidneys then excrete sugar; this gives rise to diabetes. Thus taking exercise benefits the whole body, including the brain. The kidneys also work less efficiently as a result of the process of growing older. Consequently waste products are not excreted so quickly and circulate longer in the blood. This is also the case with certain medicines and is one of the reasons why older people are more susceptible to the harmful side effects of pharmaceutical products. The kidney function deteriorates still further on account of damage caused by the too high blood pressure which often occurs with older people. Nor does the brain escape the effects of growing older. The reaction time decreases, whereby movements are slowed down. The power of coordination and equilibrium reflexes are often diminished and result in an unsteady gait and falls. The senses become less finely tuned, which means that people can depend less on their sight and hearing. This too contributes to unsteady, retarded and less fluid movements. Partly as a result of conditions such as a reduced circulation of the blood, diabetes or shortage of vitamin B older people are more often afflicted by diseases of the peripheral nervous system, particularly in the legs and feet. That also leads to difficulties in walking. In the brain of an older person certain changes sometimes occur in the production of neurotransmitters, as a result of which mental resilience and vitality are diminished. Consequently older people are more susceptible to various forms of stress and depression, which are frequently occurring causes of mental retardation and deterioration. All the above-mentioned functional changes can result in less optimal working of the brain. Mental changes It is clearly apparent from the foregoing that all bodily processes are closely connected with, and attuned to one another. If something goes wrong in one place, then the whole organism is affected. Disorders, which are comparatively harmless for younger people, such as cystitis, slight anemia or influenza, can have serious consequences for older people, because the body has insufficient reserves. This can also have a detrimental effect on the function of the mind. Thus it is understandable that the slowing down of physical processes leads to a retardation of the mental functions. Retaining new information, retrieving stored information from the memory and concentrating often become more

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difficult. But these changes of normally growing older can also often be compensated by remaining mentally active and by using special strategies. The speed of the succession of all the steps which are needed to carry out a particular action decreases. The separate elements of an action are also carried out more slowly: there is psychomotor slowing. Judging complex situations, thinking things over, taking decisions and carrying things out goes more slowly than in the past. That is why older people often choose a quiet life style. The need to take things easier also opens up new possibilities. A person’s own experience of life and the knowledge he has acquired during his life now have more influence on his thought and actions. The older person has the possibility of, and the time to do something completely new with his knowledge and experience. He can survey a whole lifespan. He can now see all the component parts of that life in relation to one another. He can see his own life in relation to life as a whole and can thus invest it with its own special significance. He can literally see the relativeness of individual problems. He has a bird’s eye view of life. He has wisdom and can pass it on to others. Hearing and looking become more a question of listening, seeing and having insight. Through their acquired knowledge and insight older people are able to concentrate more on the essence of things than on their usefulness. They also at last have time to devote themselves to things which have always interested them and which they have never got around to doing. The competitive mentality and the need to prove oneself are no longer necessary. Many older men and women continue to make remarkable contributions to society. Older people want to pass on their knowledge and experience. They are rightly convinced that what life has taught them is of importance for everyone. Throughout the world it has after all always been the oldest members of society who were responsible for passing on the values on which society, and thus also the family, was based. The older person is a ‘bridge’ between the time which is definitely past and the present. What has been is of importance to explain what is. Thus the continuity between past and present is preserved. Older people’s knowledge and experience are too valuable to be neglected. For older people sharing personal experiences with others also represents confirmation of their individuality. They were involved; they experienced it all. To be able to look back on a well spent life is of vital importance. An older persons past is his principal treasure. He has spent his entire life gathering this experience. He can live on this as his world slowly becomes short of new impressions and adventures. That is why older people find it hurtful when insufficient or no attention at all is paid to their life story. Particularly when they have partially or wholly lost their independence and are consequently no longer considered as full members of society. This can lead to reactions such as being uncommunicative and resigned or to total withdrawal, resulting in social isolation. Then there is not much left except for the company of their own memories. The distress of older people who have grown lonely often goes unnoticed. Their withdrawn attitude is wrongly interpreted as ‘resignation’. In fact it is a reaction to the sense of shame, the disappointments and the humiliations which result from the defects of growing older, feelings of uselessness and of being neglected by the community.

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But fortunately the majority of the elderly enjoy life more than is generally assumed and continue to keep their self-respect. They remain interested in everything going on around them and continue to be physically and psychosocially active. As the saying goes: “Use it or lose it”. These elderly people have a positive attitude. Naturally even the positively inclined older person cannot always escape the negative effect of events going on around him. The course of a person’s life, the conditions under which he has lived and the way in which he has been treated and has treated others during his life are all factors which leave a lasting mark on individual behavior, which endures into old age. There are also appreciable individual differences in pace, mental faculties and age-related physical changes. Nobody can function optimally when the body is subjected to illness, overtiredness and pain. The loss of loved ones and the accompanying sorrow is irrevocably bound up with old age. That makes considerable demands on the mental and emotional resilience and leads to the loss of energy and physical mobility. Contact with other people is then particularly important, since this can fill the void and give the older person the feeling that ‘he still belongs’ and can mean something for somebody. When old age is regarded in a purely negative light, then it is impossible for the younger person to make a positive approach to the elderly person. For children there are many expectations for the future. Seen purely from the point of view of their calendar age, old people do not have much future. But it may certainly be expected of them that they remain ‘on the ball’. Properly functioning seniors people do not bury themselves in the past and shut themselves off from the present and the future. This only happens when the older person is depressive. Then the flow of time stands still and everything stagnates. Even the memories, even the past. 1.4. THE DEVELOPMENT OF THE NOTION OF DEMENTIA In common parlance a distinction is still drawn between somatic illnesses and psychological illnesses. ‘Somatic’ is derived from the Greek word ‘soma’, which means body. ‘Psychological’ is derived from ‘psyche’, the Greek word for soul or spirit. With somatic illnesses the physical symptoms are to the fore. Psychological illnesses are principally characterized by disturbances in thought, emotions and behavior. The distinction between these two forms of illness dates from the time in which there was still comparatively little known about the brain and its function and role in these processes. Through the development of pathological anatomy as a research method in the last century, it became possible after a person had died of a particular disease to examine the organs for specific signs of change. Thus a link could be made between a particular clinical syndrome and the accompanying particular visible abnormality in one or more organs. The use of the microscope in this connection made a great contribution to progress. This made it possible to observe changes in the cells of the organs which were invisible to the naked eye. The microscope was also very important in brain research, which did not get underway until late owing to the enormous complexity of the brain. Two important developments around the turn of the century helped to clarify the connection between the brain and psychological disorders. In the first place improved methods became available for making the brain cells visible for microscopic examination

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with the aid of chemical substances. In the second place more insight was gained into the great number and variety of mental disturbances. Thus, for example, a connection first became clear between a form of dementia prevalent at that time, the so-called paralytic dementia (or progressive paralysis) and syphilis of the brain. Also for other forms of dementia, such as the dementia which occurs in old age, research was done into abnormalities in the brain which could explain the dementia. The word demented is derived from the Latin ‘mens’ meaning mind. Demented can be literally translated as ‘un-minded’, bereft of the mind. The word is also sometimes translated as feeble-minded or, wrongly, as insane. The term dementia comes from Philippe Pinel, a French doctor who lived in the second half of the eighteenth century and who is often considered as the father of modern psychiatry. He described dementia as “a disintegration of reason, which was reminiscent of the childish inanity of old age”. At the beginning of the nineteenth century the French doctor Esquirol, a pupil of Pinel, produced the first modern definition of dementia. He also described what in his experience could be the cause of dementia. Esquirol was focussing here on senile dementia, which is connected with advanced age: “A condition characterized by an enfeebled memory for recent events and a loss of drive and willpower. This condition develops gradually and may be accompanied by emotional disturbances.” Esquirol believed that old age (‘senilitas’ is the Latin word for ‘typical of old age’) can cause dementia. Although Esquirol’s description of dementia is still valid today, it is no longer assumed that it is old age itself which causes dementia. Nevertheless, this mistaken idea lasted for a long time and has still not disappeared entirely. Dementia is not the result of old age as such. Dementia is fundamentally different from the normal process of growing old. Dementia is now defined as: “An acquired (thus not congenital) permanent ‘overall’ loss of functions of the intellect while consciousness remains unimpaired. It mostly begins with forgetfulness about recent happenings. The loss is such that the affected person can no longer function independently in society.” Thus the patient needs permanent help. Furthermore dementia is not one particular disease. Dementia is a ‘syndrome’, that is to say a group of symptoms of abnormal functioning which occur first subsequently and later simultaneously. Functions of the mind which are more or less lost are: – thought – judgment – the ability to act independently and take an initiative – the ability to orientate oneself in time and space – the ability to remember what has happened recently and earlier on – the ability to absorb new information – reading – writing – conversing.

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As a result of these losses the self-image ultimately disappears. The demented person literally loses himself. The physical cause of dementia is a general failure of the organ which is responsible for all these functions, the brain. Modern methods of examination, such as the PET scan and the SPECT scan have made it possible to demonstrate this loss of brain function in terms of decreased metabolism. 1.5. WHO IS DEMENTED AND WHO IS NOT? From the description given above it must be clear that far and away the majority of the over-65s are not demented and they probably will not become so. It is true that a general retardation in reactions takes place. It does sometimes cost older people more effort to retrieve information stored in the memory, as for example in recalling a name. The memory of recent happenings is a little less accurate. Concentration becomes more difficult and the psychomotor system slows down. But for most older people these problems do not greatly interfere with their ordinary functioning and scarcely increase, if at all, with advancing years. They are not demented and will not become demented. Chronic depression is a more frequently occurring condition in older people, which is quite often accompanied by symptoms which resemble dementia. When there is increasing pressure from outside, as for example tensions at work or in the family, big demands are made on a persons flexibility. When young people react to this by being irritable, having physical symptoms and loss of energy, they are said to be ‘suffering from strain’. This leads-at any rate if there is absence from work—to a visit to the doctor. All possible efforts will be made to get the patient functioning again in his work or his family. He meets with understanding and support in solving his problems. For the older person things often take a very different course. For him an important and continuing stress factor is the continuing confrontation with losses. Loss of the life partner and an increasing loss of physical functions and wellbeing are the foremost factors. These losses often occur simultaneously or shortly after one another. In order to maintain his mental and emotional balance he tries as far as possible to avoid situations which he experiences as problematic. Partly because of a lack of understanding and interest on the part of those around him, this attitude leads to an ever greater degree of isolation. A lack of stimulation and inhibitions in the thought process make the situation worse and worse. The result is a constant state of depression and apathy, which is not infrequently mistaken by the onlookers for dementia. The term pseudo-dementia was until recently used to indicate a condition to some extent resembling dementia which is caused by a serious depression. This condition occurs mainly in older people, since they are much more susceptible to serious memory disturbances, loss of concentration and orientation, and psychomotor slowing than younger people. Disturbances of the cognitive powers are foremost in this form of depression. The depression-with-dementia syndrome is often difficult to distinguish from genuine dementia, all the more because genuine dementia can also be accompanied by symptoms of depression. But in the case of this syndrome the symptoms of depression are more lasting and of a much more serious nature. These people often have a guilt complex, feel themselves permanently useless and bad or continually nourish thoughts of death or suicide. In the case of genuine dementia these symptoms seldom occur. It is of

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the greatest importance to distinguish this condition of depression-with-dementia syndrome from genuine dementia. The distinction can only be established after an extensive medical and psychiatric examination. It is usually possible to treat the depression successfully, whereupon the dementia syndrome disappears. 1.6. CAUSES OF DEMENTIA Although dementia is not a direct consequence of the aging process, the older person is more at risk for the occurrence of dementia. In order to function properly the brain needs an ample supply of oxygen and glucose. The brain uses more oxygen than any other bodily organ: roughly a quarter of the total oxygen requirement of the body. Eight seconds without oxygen already lead to loss of consciousness. Four minutes without oxygen lead to irreparable damage of the brain tissue. The great vulnerability of the brain to a shortage of oxygen and glucose and to the inadequate excretion of toxic waste products from the metabolism becomes even greater in older people. As has been mentioned earlier, the older person is more at risk for disturbances of circulation and metabolism. The processes which govern the intellect and the emotions belong to the most complicated functions of the brain. These functions come about through an extremely delicate interaction of all parts of the brain and of all the brain cells. For this the brain cells must have intimate contact with one another. This contact is brought about by infinitesimal amounts of chemical substances, designated as neurotransmitters. ‘Neuro’ is derived from ‘neuron’ or nerve cell. The neurotransmitters are produced in the nerve cells themselves. Slight changes in the extremely delicate balance of these transmitters lead to disturbances in the function of the intellect, emotions and behavior and of the motor system. The surroundings of the nerve cells must therefore be kept as stable as possible. There are innumerable factors which can disturb that environment. Thus the functions of the intellect and emotions can be seriously disrupted by amongst other things a lack of oxygen or glucose, a shortage of certain vitamins required by the brain cells, toxic substances which damage the brain cells (including breakdown products from the metabolism) and by a shortage or excess of salt or water and by overmedication. When the disturbance occurs acutely and is very serious, as for instance with an interruption of the oxygen supply to the brain in the case of cardiac arrest, then all brain activities come quickly to a complete standstill and unconsciousness occurs, followed by brain death. When a disturbance takes place subacutely, as for instance with serious infections such as pneumonia, or with dehydration, then a state of delirium may occur. In delirium consciousness is not lost entirely, although it is on the borderline. The degree of consciousness varies, in the same way that a gas flame flickers when it has been turned low; it only takes a breath of air to put it out. For the patient this means that periods of disorientation and drowsiness alternate with periods of restlessness, agitation, hallucination and great bewilderment. Delirium occurs fairly suddenly, within the space of a few hours. It is a critical condition, a transitional stage to unconsciousness, which requires immediate admittance to hospital. Delirium can also result from excessive alcohol consumption or from an overdose of certain medicines. It is therefore always

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most important to find out whether the delirious patient takes medicine, and if so which and how much. The elderly in particular are prone to developing this condition. Older people often take various medicines at the same time; they are particularly susceptible to the harmful side effects and thus also to the occurrence of delirium. The state of delirium is reversible. If the cause of the delirium is known and treatment is given as quickly as possible, this condition gradually disappears. Finally it is also possible that the disturbance in the brain functions, in particular those which govern the intellectual processes, develops very gradually. This results in a dementia syndrome. This syndrome can be the consequence of disturbances whose origin lies outside the brain. Examples are chronic anemia; shortage of vitamins, especially of vitamin B12 and folic acid; or abnormalities of the thyroid gland. If these abnormalities are corrected, the dementia syndrome sometimes disappears. But it can happen that the brain cells are so badly damaged that a complete recovery of the original brain functions is impossible. It is always necessary to have a thorough general physical examination to look for disease processes outside the brain as the possible cause of dementia. The dementia syndrome usually results from disorders of the brain itself, the cerebral membranes and the blood vessels in the brain. Thus it can be caused by brain damage with or without hemorrhage (subdural hematoma) resulting from a fall on the head. A few days after the fall or earlier a state of confusion occurs. The fall, which is the cause of the bewilderment, has then sometimes already been forgotten. In the case of older people who suddenly become confused it it most important to examine the head for swelling and contusions and to refer them to the doctor as soon as possible. Brain tumors and brain metastases from cancer can sometimes also manifest themselves in the form of a dementia picture. Particularly before the discovery of antibiotics, inflammation of the brain and the cerebral membranes, as in the case of syphilis, was an important cause of dementia. At the present day infectious diseases still play a role in the occurrence of dementia. AIDS is an example of this. The connection between disorders of the blood vessels of the brain and dementia has long been known. Until recently it was assumed that the cause of senile dementia, by which is meant dementia occurring after the age of sixty five, was hardening of the cerebral blood vessels. This view has changed during the past twenty years. Nevertheless disorders of the cerebral blood vessels still play an important part as the cause of a dementia syndrome. High blood pressure and cardiovascular diseases or diabetes are often at the root of this so-called vascular dementia. Sudden blockage of a blood vessel in the brain by a clot (cerebral thrombosis) or hemorrhage caused by the rupture of a blood vessel in the brain (cerebral hemorrhage) are accompanied by the clinical symptoms of a stroke, which is also known as a ‘fit’, ‘apoplexy’ or ‘cerebrovascular accident’ (abbreviated to CVA). Whether or not preceded by a period of unconsciousness or confusion, these events usually lead to a permanent disturbance of one or several brain functions. Thus, for instance, aphasia (the inability to express oneself or to understand spoken language) may occur, with or without paralysis of an arm and/or a leg. In these cases the damage remains limited to certain brain areas and their functions. The intellect often escapes serious injury. A person is not demented because he cannot make himself understood or because he cannot understand spoken language. The cerebral thrombosis or

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cerebral hemorrhage usually involves one blood vessel and leads to isolated defects, unless either large parts, or very specific parts of the brain have been damaged. It is a different matter when a number of smaller blood vessels in the brain are obstructed by clots. The local damage is too slight for the occurrence of a clear-cut isolated defect, such as paralysis for example. But the damage is spread over greater areas of the brain, resulting in the partial disturbance of many of the brain functions. This produces the picture of multi-infarct dementia (an infarct is an area of dead tissue). Small blood vessels may also gradually become blocked. With each further blockage a small amount of brain tissue is destroyed. Finally there comes a point at which so much brain tissue has been destroyed and the mental faculties have been so impaired that a dementia syndrome arises. Vascular dementia is a progressive form of dementia, just like multiinfarct dementia; that is to say: it gradually becomes more serious. Sometimes the patient or his caregiver can indicate the moment at which a particular deterioration occurred. It is sometimes possible to slow down the progression of this form of dementia by treating too high blood pressure or irregular heart action or diabetes. But the damage which has once occurred cannot be undone. In the forms of dementia discussed so far the cause, which can lie both inside and outside the brain, is known. However, there are also forms of dementia whose cause is not known. When the brain of these patients was examined after their death, it was found to be atrophied and underweight. With the aid of the microscope certain characteristic changes can be seen in and around the nerve cells of the brain. These forms of dementia, whose cause has not yet been discovered, are referred to collectively as primary degenerative dementia. The nerve cells in the brain slowly lose their function, degenerate and die off. These forms of dementia have an insidious, almost imperceptible beginning. The dementia gradually becomes increasingly serious over a period of years. As time goes on more and more mental functions are lost, until finally the patient knows nothing more, can no longer speak and cannot even walk. Various forms of this progressive dementia are known. The most prevalent form of primary progressive dementia is Alzheimer’s disease. Most of the demented patients in the nursing homes are suffering from this form. It is the form which has been the most researched and the best described. Other forms of primary dementia are Pick’s disease, frontal lobe dementia and the dementia accompanying Parkinson’s disease. On account of the aging of our population the number of older people continues to increase. Consequently the number of people with Alzheimer’s disease also continues to rise. In the rest of this book we shall limit ourselves to this disease.

CHAPTER 2 ALZHEIMER’S DISEASE 2.1. INTRODUCTION In 1907 Aloïs Alzheimer, a neurologist in Frankfurt-on-Main, described a disease which was characterized by slowly advancing dementia accompanied by serious behavioral disturbances. The end of the disease was marked by the total mental and physical deterioration of the patient, who lay motionless in bed like a fetus in the womb, with legs and knees pulled up. When the first symptoms of dementia occurred, the patient was barely fifty. Five years later she died in an institution. From the post mortem it appeared that the patients brain had shrunk considerably. When the brain tissue was studied under the microscope, it could be seen that there had been a considerable loss of brain cells, especially in the cerebral cortex, the outermost part of the brain, also called grey matter. Many nerve cells showed peculiar changes. These cells contained a tangle of fibrils, which had never previously been observed. Tangles of fibrils often filled up the whole nerve cell or neuron, after which the cell died off. After the dead cell had disappeared, these fibrillary tangles were still lying in the place first occupied by the nerve cell, like tombstones. Apart from this so-called ‘neurofibrillar degeneration’ of nerve cells, abnormal changes were also observed in the tissue of the cerebral cortex between the nerve cells, in the form of innumerable microscopic foci of an unknown and abnormal substance. The nerve cell dendrites (branching processes) which lay round these foci were damaged. It was not until twenty years later that it became clear that the nucleus of these foci consists of amyloid, an abnormal protein. These foci are now known as ‘senile plaques’. Alzheimer wrote in his article: “It is evident that this is a question of an unusual and little known disease process.” He considered this disease to be a form of pre-senile dementia, since it occurred before the senium, the stage of life with the decline of physical development or involution, which begins somewhere during the seventh decade. The view that it was an uncommon disease continued to be taken until some fifty years after Alzheimer’s death in 1915. Today there are very few people who have never heard of the disease which bears Alzheimer’s name. How did this happen? Has this “unusual, little known disease” suddenly assumed epidemic proportions? Three important causes can be indicated for the great increase in the number of patients with the diagnosis ‘Alzheimer’s disease’ since the beginning of this century. In the first place this disease almost always occurs in late middle age and especially in old age. Better medical and socioeconomic conditions have led to a greater increase in the over-sixty five group than in any other population group. In 1900 the over-sixty-five group represented some four per cent of the total population of the United States. That percentage has now risen to twelve and a half per cent of a total population which is more

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than three times as great as in 1900. When there are more people in the group most at risk for the occurrence of the disease, then it is understandable that it is more prevalent. In the second place it is now possible to make the diagnosis with much more certainty than was previously the case. The clinical picture of the disease has now been well described. It is true that the cause of the disease is not yet known and that there is still no blood test by which the diagnosis can be established with absolute certainty. But with the aid of modern neuro-imaging techniques other causes of the dementia syndrome can be more easily identified. And in the third place it is now clear that the majority of older people who are suffering from so-called ‘senile dementia’ actually have Alzheimer’s disease. The same microscopic changes in the brain tissue which Alzheimer had described were before long also recognized by pathologists in the brains of old people who had suffered from senile dementia during their life. But the view of senile dementia as due to shrinkage through ‘aging of the brain’ was during the first part of the 20th century still firmly rooted in medical thought. And for the layman dotage belonged to old age and the two were almost identical. According to views held at that time the most important demonstrable cause of dementia in older people was hardening of the blood vessels of the brain. This was what Aloïs Alzheimer himself believed. The great change of opinion only came about towards the end of the Sixties, when three research workers in England, Roth, Blessed and Tomlinson, examined the brains of a group of older people who had suffered from senile dementia during their life. They discovered that in the majority of these cases the vascular changes observed in the brain could not explain the dementia syndrome. However, the brains of these old and demented patients did exhibit to a large extent neurofibrillar degeneration of the nerve cells and senile plaques. Exactly the same changes which Alzheimer had described in his much younger patient with pre-senile dementia. As a result of these findings the early form of Alzheimer’s disease and the dementia of people of sixty-five and over, which is accompanied by the same abnormalities in the brain which Aloïs Alzheimer had described, are considered as one and the same pathological process. Thus Alzheimer’s disease has a pre-senile and a senile form. The clinical symptoms and the general course of the illness are broadly speaking the same for both forms. It is no longer a rare disease. In the United States about four million people suffer from Alzheimer’s disease. Three in every hundred people over 65 suffer from Alzheimer’s disease. For the over-75s this increases to nineteen in every hundred people. According to some research workers even almost one in two people over 85 suffer from Alzheimer’s. If that were true, we would have almost returned to the opinions at the beginning of the century, namely that becoming demented is part of growing old. Fortunately, most people of 85 and over function independently and many continue to make valuable contributions to society. Gradual degeneration Alzheimer’s disease is a disease of the brain. Its destructive effect is first felt in the mental functions and thereafter spreads to physical functions, such as walking, standing and sitting. The progress of the disease ultimately leads to the complete loss of mental

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function. This is accompanied by a gradual loss of the person as an individual and ends in total disability. The subtle changes in the power of memory and in personality at the beginning of the illness are at first difficult to discern. If the patient is still working when the illness begins, they usually lead to premature retirement or disability retirement. The deterioration in the mental functions slowly continues; within about five to seven years this leads to a demential syndrome. The intellectual faculties at this initial stage of the illness are disturbed to the extent that the patient gradually experiences difficulties with paying bills, planning a journey, preparing more elaborate meals. He slowly becomes incapable of functioning independently in society. He takes less and less initiative and withdraws more and more into himself. The vague feelings of anxiety which at first accompanied the beginning of loss of memory may now give way to periods of depression and emotional instability. Whereas at first a person was still able to camouflage his forgetfulness, the resultant problems are now obvious to the world at large, so that the patient is painfully confronted with them. After about another two years even simple decisions, such as what clothes to wear in what weather, become impossible. The continual vague sense of failure, of losing ones reason, becomes too much for the patient. The world becomes increasingly less familiar and more threatening. He cannot accept the loss of his own self and stubbornly denies that anything is the matter, a situation which is accentuated by his loss of insight. Many patients now become suspicious of people around them, whom they blame for their own deficiencies. About ten years after the beginning of the very first symptoms the progressive loss of practical knowledge and skills leads to great difficulties with daily routine activities. Subsequently there are problems with dressing themselves, then with taking a bath or shower on their own and thereafter with the actions of going to the toilet. Finally the patient becomes incontinent, first with regard to urination and afterwards to defecation. This stage of the illness, which lasts about two and a half years, is usually the most difficult for the caregiver. The patient now needs practical help twenty-four hours a day. But his mental faculties are impaired to such an extent that the person himself is unable to judge his own situation. Thus he often persistently, and sometimes violently, refuses help, especially when it necessarily impinges on his privacy, such as with bathing and dressing. The emotions endure, but they are no longer directed and controlled by reason and will. This leads to capricious behavior. A sudden change from friendliness to rage and from docility to stubborn resistance and sometimes even to violence can make caring for the patient extremely difficult. His behavior becomes less flexible and more unpredictable. His movements become less supple and acquire a mechanical and robot-like quality. Heightened muscle tension now gradually occurs, which is especially noticeable when the patient is touched and handled in the course of being cared for. The degree of heightened muscle tension very much depends on the way in which the patient is treated. If he is taken hold of suddenly or roughly, then stiffening will occur. After this turbulent stage a calmer period gradually begins. The cognitive functions in this last stage have now been almost totally blunted. What was left of speech is gradually lost. The posture in walking and standing is often bent forward, walking has become

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mechanical with small steps. The face is often expressionless, but he or she can still smile or look angry. The patient has now reached the last stage. With the daily physical care a person may still offer resistance, but that does not usually last long and the patient is less emotional than previously. If someone suddenly touches him, that often causes general stiffening of the muscles. Gradually, walking and standing become impossible. The patient can sit blankly for hours in a chair, dozing into sleep for longer periods. However, with some patients there may be long periods of moaning or shouting, which are possibly expressions of vague, no longer conscious feelings of discomfort or displeasure. Even sitting upright and holding up his head become impossible if the patient is not supported by pillows. Occasionally a faint smile may break through when he is addressed. The increased tension of the flexors leads to bending in the elbows, wrists, fingers, hips and knees. By slowly and carefully stretching the extremities, permanent deformities of these joints may be averted, provided this is done regularly every day. If the patient lives long enough, the body may finally assume the position of the fetus in the womb. He can continue to live for years as a hothouse plant. The course of the disease, as outlined in short here, will be dealt with in more detail in the following chapter. In the care and nursing of the Alzheimer patient it is important to realize that the constantly changing clinical picture keeps posing new problems, which keep demanding new solutions, while old problems sometimes disappear. As the illness progresses the patient becomes increasingly helpless and thus more dependent on caregivers. On closer examination it can be seen that the loss of functions in Alzheimer’s disease as described above roughly occurs in the reverse order in which these same functions are acquired during the development from newborn baby to adult. But this does not mean that the patient is to be compared to a child. During the period of development from baby to adult the child takes part in building up his own world and is pleased with each new thing he learns. The Alzheimer patient gradually loses his world, without being able to do anything about it, and this happens against his will. Alzheimer’s disease is not a second childhood. 2.2 THE NERVOUS SYSTEM IN RELATION TO ALZHEIMER’S DISEASE A distinction is made between the central nervous system and the peripheral nervous system. The central nervous system consists of the brain and the spinal cord. The nerves constitute the peripheral nervous system. These are actually the long processes or axons of the nerve cells which connect the brain and the spinal cord with the sensory organs, the skin, the muscles and the internal organs. Via specialized extremities the afferent or incoming nerves receive impulses from the outside world, such as warmth, cold, pressure, light, sound and from inside the body, such as pain, and conduct them to the dorsal part of the spinal cord and the brain stem. Efferent or outgoing nerves operate from the ventral part of the spinal cord and the brain stem to transmit the impulses to the muscles, whereby the latter are enabled to contract or relax and thus make movement possible.

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The central nervous system becomes increasingly complicated in construction and function from bottom to top (from the lower back towards the head) (see figure 1). It is composed succesively of the spinal cord, the spinal bulb or medulla oblongata, which already lies within the skull, with the little brain or cerebellum behind it. Then come the pons, the midbrain, the interbrain or diencephalon, consisting of the thalamus and the hypothalamus, which forms the front of the interbrain, and finally the great brain or cerebrum. The whole area between the spinal bulb and interbrain is known as the brain stem. Just as the trunk (stem) of a tree, the brain stem wears the ‘crown’ of the central nervous system: the great brain or cerebrum, consisting of two halves or hemispheres. Transmission of impulses The spinal bulb, the pons and the midbrain contain the nerve nuclei of the cranial nerves, which connect the sensory organs and muscles of the head with the brain stem. Here lie the nerve cells of the nerve fibers which conduct sound, sense of equilibrium, taste, touch and facial pain. The light impulses of the eyes do not go to the brain stem, but to the interbrain. The olfactory stimuli are the only impulses which bypass the brain stem as well as the interbrain on their way to the great brain. The impulses which activate the muscles of the tongue and palate, the pharynx and oesophagus, the face and eyes all originate in the nerve nuclei of the brain stem. The little brain attunes all movements to one another. It receives information from the senses of equilibrium, hearing and sight and from the muscles. The central nervous system is divided into six main parts, indicated on the left: I. the spinal cord, subdivided into cervical, thoracic, lumbar, and sacral regions; 2. the medulla; 3. the pons with the overlying small brain or cerebellum; 4. the midbrain; 5. the interbrain or diencephalon (the hypothalamus and thalamus) 6. the cerebral hemispheres or great brain. The cerebral hemisphere has three deeplying structures; only one, the basal ganglia is illustrated here. Overlying the cerebral hemispheres is the cerebral cortex, which is divided into four lobes: frontal, parietal, temporal, and occipital. The brain is also commonly subdivided into three broader regions, indicated on the right: the hindbrain (medulla, pons, and the cerebellum), the midbrain, and the forebrain (diencephalon and cerebral hemispheres). The brainstem includes the structures of the hindbrain and midbrain, exept the cerebellum. The hippocampus (not visible here) is located at the medial (inner) aspect of the temporal lobe. (From: Kandel et al., 1991) A network of nerve cells and nerve fibers known as the reticular (i.e., network-like) formation run through the central area of the brain stem and exert an activating influence on the cortex of the great brain. Damage to this area causes unconsciousness. The brain stem also contains special groups or nuclei of brain cells, which produce certain chemical substances, so-called neurotransmitters, which influence other parts of the brain. At least nine different neurotransmitters are presently known. These

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Figure I. An overall view of Central Nervous System.

neurotransmitters relay the impulse from one brain cell to another. The transmission takes place in the ‘synapse’ or place of contact. There the extremities of the nerve cells almost, but not quite touch one another, being separated by a very small space, the synaptic cleft. When the nerve cell emits an impulse, then this impulse has to jump the cleft in order to stimulate the adjacent nerve cell. This happens by means of the impulse on one side of the synaptic cleft activating the nerve cell to release a small quantity of neurotransmitter on the spot. This substance can jump over the cleft to the extremity of the other nerve cell, which is stimulated in its turn and passes on the impulse. The neurotransmitters which are made in the special nuclei of the midbrain are transported to the great brain and other parts of the central nervous system via the axons of the nerve cells in which they were produced. A shortage of a particular neurotransmitter can lead amongst other things to symptoms of depression, Parkinson’s disease or loss of memory and confusion. A disturbed balance of particular neurotransmitters can also lead to hallucinations or anxiety. By blocking or stimulating such a neurotransmitter with certain medicines, such as neuroleptics and anti-depressants, the harmful effects of such a disturbed balance can sometimes be diminished. With

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Alzheimer’s disease the amount of many neurotransmitters in the brain has decreased and the delicate balance needed for the brain to function normally has been disturbed. The great brain consists of two brain halves or hemispheres, a left hemisphere and a right hemisphere, which are each divided into four lobes. The two frontal lobes are involved in speech, volition, motivation and the initiation of movement. Below laterally are the two temporal lobes, which are involved in understanding the spoken word, hearing and the memory functions. The olfactory impulses also arrive here. At the posterior are the two occipital lobes, where the visual impulses are processed and become conscious. Above laterally are the two parietal lobes, where stimuli from other areas of the brain are connected or associated with one another and where also the touch impulses of the skin and muscles are processed and become conscious. Change in metabolism and nerve tissue The metabolic activity of the brain as a whole and of the various lobes individually can be registered by means of certain scanning techniques, such as the PET(Positron Emission Tomography)-scan. A small amount of radioactive sugar is injected into a vein of the patient and is absorbed by the brain. The scanner registers the amount of radioactivity in the different parts of the brain. Thus the amount of sugar used by these different parts can be measured. With the aid of this technique it is often possible at the beginning of Alzheimer’s disease to discern already decreased metabolic activity in the temporal lobes and parietal lobes and in some parts of the frontal lobes. Later in the course of the illness the decreased metabolic activity also spreads to larger parts of the frontal lobes. The metabolism of the occipital lobes is only affected late in the course of the illness. The great brain or cerebrum comprises an outside layer, the cerebral cortex, consisting of grey matter, in which the nerve cells are situated, and the white matter in the layer beneath, in which the extremities of those nerve cells are situated. As mentioned earlier on, in Alzheimer’s disease certain nerve cells, especially in the cerebral cortex, but also in some parts of the interbrain, and brainstem, produce abnormal nerve fibrils which finally fill up the whole nerve cell and impede its function. Finally the nerve cell dies off. Ultimately considerable numbers of nerve cells are lost. At the same time large quantities of an abnormal protein, beta-amyloid, are deposited between the brain cells. The nerve cells round the deposits are damaged. The amyloid is also found in the small blood vessels of the cerebral cortex. The synapses in particular seem to suffer from the pathological process, which results in a large scale breakdown of connections between the nerve cells. An area of the brain which is soon seriously affected by these changes is the hippocampus. This part of the brain, which lies on the inside of both temporal lobes, has an important function in the reception and processing of new information. The hippocampus (Latin for sea horse) is part of the so-called limbic system (‘limbus’ is Latin for edge), an area of the brain which controls the emotions. With Alzheimer’s disease extensive abnormal changes are in particular visible in these parts of the brain. Atrophy (shrinkage) of the hippocampus can be visualized on a Computerized Tomography Scan (CT Scan) of the brain in patients with very early Alzheimer’s disease.

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Alzheimer’s disease principally affects the nerve cells (grey matter) in the cortex of the great brain. Parts of the brain stem are also damaged by the pathological process, in particular the cells that produce neurotransmitters that are transported to the great brain. Those areas in the brain stem, which look after the vital functions such as breathing, remain however relatively unaffected for a considerable time. With Alzheimer’s disease the most complicated brain functions, for which the collaboration of large numbers of nerve cells is required, are those which suffer first and the most. The power of speech is soon impeded, but the ability to walk remains intact for a long time. However, by the end of the disease almost all brain functions have been affected. The cause of the disease is still not known. Nor has the role of the amyloid yet been clarified. This substance is also found in the brain of older people who are not demented, though in these cases it is present in small quantities and only in certain parts of the brain. With Alzheimer’s disease it occurs in large quantities in many areas of the brain. The extent to which family history is a risk factor for Alzheimer’s disease is not always clear. There does exist a hereditary form which runs in families. In this form, which is very rare, the victim is afflicted at a young age. In the late onset form, which occurs after the age of sixty five, family history is much less of a risk factor. Generally speaking the later the onset, the lesser the risk of hereditary influences. Recently, a genetic risk factor for the late onset form of Alzheimer’s disease has been identified. Genetic research may provide promising leads in the quest for a cause of this dreaded illness. 2.3 SPECIFIC PHYSICAL SYMPTOMS How can the clinical symptoms, which are a direct consequence of Alzheimer’s disease, be distinguished from the symptoms which are not? After all, Alzheimer’s disease is an illness principally occurring among older people. Apart from the symptoms of the disease itself, which result from the slowly progressing brain damage, there are the general changes accompanying the process of aging. The functional condition of the patient can be influenced by both processes simultaneously. As was mentioned previously, the loss of function resulting from the disease occurs according to a certain pattern: the functions last acquired are the first to be lost. Thus, for example, if a patient with dementia who is still continent can no longer walk, the loss of ambulation is probably the result of an additional complication and not due to Alzheimer’s disease. Or he may have another form of dementia. After all, a child learns to walk before it is toilet-trained. An Alzheimer patient who is incontinent as regards urine and feces, but is still able to dress himself, should be examined for other causes of incontinence. It is possible that he cannot reach the toilet on account of pain in the legs or the use of diuretics (medicines promoting the excretion of urine) or because of being strapped to a (wheel-) chair. He may possibly have cystitis or diabetes. An Alzheimer patient who can still speak understandably and form correct sentences should still be able to walk. If this is not the case, there may be reasons which lie outside the pathological process of Alzheimer’s itself, as for example pain in the hip or knee joints, the legs or the feet. It is also possible that through overmedication, such as with

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certain anti-psychotic drugs, a patient may exhibit symptoms of Parkinsonism with muscular rigidity. Or he may be drowsy as a result of tranquillizers. A person can also be generally enfeebled through a shortage of fluids or salt. The Alzheimer patient is much more susceptible to delirium, an acute condition of confusion with restlessness and bouts of drowsiness, than the healthy person. Cystitis, a cold or loss of fluid is sometimes enough to bring it on. Any Alzheimer patient whose mental condition clearly deteriorates within the course of a few hours or days should be examined immediately for signs of infections, loss of fluid etc. If an Alzheimer patient does not eat or refuses food, that may be the result of infections of the mouth, dental disorders or treatable problems with swallowing. If the patient is prematurely given a stomach tube, he is not only deprived of part of his independence, but also of the enjoyment of food and of contact with the caregiver. Alzheimer patients often exhibit heightened muscular tension in the arms and legs. This can easily be observed if, for instance, the patients arm is given a hard pull. This tension can also be heightened if the patient is compelled to sit on an uncomfortably hard chair for a long period, or by a wound caused by bedsores (decubitus). This form of heightened muscular tension increases as the disease progresses, but it is aggravated by pain impulses and can lead to premature contracture of the joints. Even in the late stage of the illness, when the patient is no longer able to walk, it is possible to postpone the occurrence of permanent stiffening of the joints (contractures) for quite a long time by slow and careful passive range of motion of the joints and by ensuring that the patient does not have to spend long periods sitting or lying in a set position. Though the patient is usually unable to indicate what is troubling him, he has just as much right to medical attention as anyone else. Most of the patients with Alzheimer’s disease are elderly. They are subject to all the disorders which may accompany this period of life. They are very sensitive to the effect of additional diseases. 2.4 THE CARE AND NURSING OF THE ALZHEIMER PATIENT, GENERAL REMARKS The nursing care of the patient suffering from Alzheimer’s disease calls for special skills. Extensive knowledge of this disease and the course it takes is an essential requirement. The symptoms must not be seen purely as a loss of functions but also as an attempt by the organism to compensate the damage. Alzheimer’s disease affects the person in his totality. In the end it brings about total mental and physical collapse and deterioration. This ‘via dolorosa’ can last for ten to fifteen years. The organism makes repeated efforts to restore the balance at another functional level. The patient is constantly trying to adjust himself to his mental deterioration with the aid of the means still available to him at that particular moment. Thus the behavioral changes which occur and which are continually altering as the illness advances must in part be seen as compensation mechanisms with which the patient tries to restore his constantly disturbed mental balance. The caregivers who are responsible for looking after and nursing these patients do not have an easy task. They have to create the right conditions for an environment in which the patient’s repeatedly disturbed balance can be maintained as long as possible. It must

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be an environment in which the patient has the opportunity to remain a ‘fellow human being’ as long as possible. Those who have a permanent relationship to the patient are continually involved in this endeavor. In the care and nursing it is the interaction between the patient, his immediate caregivers and all other caregivers involved that occupies the central position. The basic element in this interaction is observation, which leads to recognition of the problem and subsequently to insight into the patient’s condition and needs. From this perspective conditions can be created for better nursing care. If the emphasis is laid solely on the technical, economic or utilitarian aspects, both the patients and the caregivers are the losers. There are a number of factors which make the care and nursing of the Alzheimer patient a matter of special attention. The essence of the pathological process is the gradual loss of the patient’s own world. He has spent his life building up this world and is now compelled involuntarily and irrevocably to give it up. He has continually to take leave of his world. In the midst of all this he tries to maintain his integrity as a person, to retain his dignity, with all the means at his disposal. It is the last task which he has to fulfil as a human being. The caregiver’s task is to help him in this endeavor, to recognize and reaffirm his human value. If this task is to be properly performed, insight is needed into what is going on in the patient’s mind. Through the gradual loss of his world, the patient increasingly loses his hold on that world. This is accompanied by loss of function, which goes gradually. The clinical picture is continually subject to alteration. For the patient the loss of his own world means an increasing loss of structure in his environment and increasing chaos. The loss of structure is so great that the perception of time and space gradually disappears. The things around him become devoid of meaning. He is like a ship adrift at sea. All his links become broken. Only demonstrations of affection and attachment, the nonmaterial and the timeless, continue to retain their significance for him. Alzheimer’s disease is a protracted illness in which there is no improvement, only deterioration. There is still no cure but the suffering can be significantly alleviated. During the course of the illness it becomes increasingly difficult to get into contact with the patient and thus be able to share his experiences. The patient is usually unable to put his gratitude into words. He appears ‘ungrateful’ and ‘recalcitrant’. He is in constant need of full and undivided attention. The caregiver must try to structurize the environment as far as possible. The caregiver must try to let the patient function as long as possible with the means still available to him. Seen from this perspective the definition of caring for and nursing the Alzheimer patient can be formulated as follows: Based on a professional attitude and professional ethics, looking after and nursing the Alzheimer patient means systematically, methodically and functionally approaching and guiding the patient in his increasingly ‘chaotic’ and shrinking world right up to the end of his life. This can only be achieved in a coordinated multidisciplinary form of cooperation, in which all those involved are fully aware of the patient’s life history.

CHAPTER 3 CHANGES IN BEHAVIOR 3.1 THE DEVELOPMENT OF THE BRAIN AND BEHAVIOR A person’s behavior comprises everything which another person can observe about him; everything through which he both consciously and unconsciously manifests himself to the outside world. It is the expression of his feelings, experiences, passions, needs, habits, thoughts and aspirations. Human behavior consists partly of innate patterns, such as expressions of anger, fear or pleasure, which already occur in a baby. The newborn baby has only diffuse, strong feelings of pleasure or displeasure which he can only express in a primitive manner. Everything which causes pain or distress represents a threat. His primary need is food. He is totally dependent on his mother. His behavior consists of defensive reactions, which must repel harmful impulses from the environment, and approach reactions, which are for the benefit of nourishment, such as searching for the breast and sucking. His mother, who provides his nourishment and protects him against the dangers which threaten him, is his first contact with another person. It is to her that his first expressions of attachment and demands for attention are directed. The beginning of human interaction, of social behavior is rejection or approach, according to whether the other person is experienced as threatening or helpful. At birth the temperament is also already present in rudimentary form. But for the major part human behavior is acquired. The child has to learn to become a social being, in order to form ever more and stronger ties with his environment and at the same time increase his independence. When he is growing up, those responsible for his upbringing first teach him gradually to control his impulses and later to allow his feelings to be guided by his developing reason. In order to be able later on to function independently in society, he must learn that within the community in which he lives there are certain rules, which are for the purpose of allowing that community to function as well as possible. The better he can control his own impulses and feelings, the more hold he gains on his environment, which thereby becomes less threatening. He learns these skills by practice. As long as the child himself still lacks insight, it is the upbringer who helps him learn to control his impulses, so that his emotional life can develop. He learns to accept frustrations when wishes are not immediately complied with. He learns to keep mounting feelings of irritation and anger in check. Through practice the child also learns to control ever more complicated physical functions and activities. He learns successively to walk, to go to the toilet, to wash himself, to dress and undress and how to eat with knife and fork. The totality of his conduct acquired by practice forms habitual behavior. Each individual has his own habitual behavior with individual variations. Habitual behavior enables a person to perform many of the daily routine actions more or less automatically in a certain acquired order without having to give much thought to it. That spares a good deal of time, which is then available for other activities.

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The intellectual faculties are the last to develop. These include the receptive powers, memory, thought and the expressive functions. The receptive powers make it possible to receive, process, classify, interpret and integrate all the information impulses which come in via the senses from the outside world. The memory process makes it possible to store the new information in the brain, compare it with information already present and retrieve it again at a later date. The functions of thought include the linking and organizing of stored information, reasoning, insight and the power of judgment and of imagination. It is only possible to plan future activities within a particular time schedule if the person is able to visualize both the present and the future situation. By means of the expressive functions, feelings and acquired knowledge can be expressed in spoken and written form and gestures and actions can be attuned to the expressions. The development of the intellect has important consequences for the emotional life. Through the connection of the intellect to the already partially developed emotional life it is possible for motivated, deliberate actions to take place. Actions are no longer merely determined by impulses or by stimuli from outside. They are now set in motion and carried out more from within the thinking person. They are now guided by motivation and initiative. The motivation ultimately determines whether, how and why someone does something. Initiative means to begin something of ones own accord. The development of the human being, from baby to full adult member of the community, takes a long time. This is because on the one hand our society is so complicated. On the other hand because the development of the brain, which is essential to the process, takes so long. The human brain needs about eighteen years to complete this process. The development of the brain functions follows a certain pattern. That is reflected in the activities of the child. First comes smiling, then being able to hold his head upright, further sitting, walking, talking, then becoming toilet-trained and then being able to do the daily activities of washing and dressing by himself. There are individual variations on this pattern. Sometimes for instance children are able to talk before they can walk. The functions which the child successively learns to control become increasingly complicated; they run parallel to the development of the brain. With Alzheimer’s disease these functions are gradually lost again roughly in the reverse order to which they were acquired. Functionally speaking the patient returns to the state of a child. He enters his second childhood. 3.2 BRAIN DAMAGE AND BEHAVIORAL REGRESSION Human behavior is the totality of the human brain functions perceivable to a fellow human being. It is, as it were, the delivered end product of the brain. Behavior is irreversibly influenced by damage to the brain. The more serious the damage, the greater the behavioral regression. In this context regression means: the adult’s reversion to behavior which corresponds to an earlier, childlike stage of development. Much of what is known about the influence of certain parts of the brain on behavior comes from studies which were made on patients with localized brain damage, such as lacerations, brain tumors, cerebral hemorrhage and infarcts/or the results of surgery. Thus it is known that damage to an area on the inside of each temporal lobe, the hippocampus (Latin for seahorse; the name is suggested by the form of this part of the

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brain) makes it impossible for the patient to obtain new information, while his memory of everything that happened before the damage remains intact. Patients with a damaged hippocampus keep on asking the name of the person who introduces himself to them. They cannot retain what they have only just seen, heard or read. The hippocampus is closely connected with an almond-shaped group of nerve cells, the amygdala (Greek for almond), which lie within the temporal lobe. This part of the brain is of importance for the generation of certain emotions, such as fear or agression. The amygdala possibly plays a role in giving emotional quality to occurrences which renders them important to the person concerned. When he remembers the event later on, the memory is accompanied by the same emotional quality as the original occurrence. This imparts liveliness to the memory and a feeling of familiarity. Emotionally loaded memories leave a deeper impression behind. Damage to the posterior part of the outside of the left temporal lobe leads in righthanded people to their no longer being able to understand spoken and written language. They can speak and often speak a lot, but what they say is senseless and without rhyme or reason. Damage to the parietal lobes, leads to disturbances in spatial perception and to loss of orientation with regard to the patient’s own body in space, to disturbances in perceiving depth and distance and disturbances in the perception of movement. These disturbances may manifest themselves as a distorted perception of the environment and as illusions. This damage can also lead to an inability to connect visual and auditory impressions. The patient looks at someone, hears him speak, but cannot associate the sound with the person he sees in front of him. As a result of the disturbed perception of his own body and of the parts of the body in relation to one another, he is sometimes unable to dress himself any longer. Damage to the frontal lobes can result in the patient no longer being able to express himself in words, even though he knows what he wants to say. This defect is often seen after a cerebral hemorrhage or cerebral infarct, an area of dead tissue resulting from a bloodvessel occlusion, in the left frontal lobe of right-handed people. It is above all the frontal lobes which do service in a person’s ability to express himself and present himself to others. Damage to these parts of the brain results in serious behavioral disturbances. Severe injury to the frontal lobes can also lead to the inability to carry out in the right order an activity, which consists of a succession of purposeful component actions, such as dressing or lighting a cigarette. Damage to these sections of the brain can also lead to loss of decorum (or feeling for social appropriateness) such as urinating and defecating in public. The frontal lobes have extensive connections with the hypothalmus, a part of the brain which lies at the base of the interbrain. Via the hypophysis or pituitary gland this part of the brain is closely connected with the endocrine glands and mediates emotional behavior. It plays an important role in the generation and the expression of pleasure and displeasure, which in turn influence motivation. Initiative and motivation are often disturbed when there is damage to the frontal lobes. In serious cases this leads to a total absence of spontaneous activity and to complete apathy. The occipital lobes are closely involved in the visual faculties. Damage leads to not being able to recognize and not being conscious of the visible world. Visual hallucination can also occur: seeing people or things which are not really there.

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In the Alzheimer patient the hippocampus is in all probability one of the very first parts of the brain to be affected by the disease; then follow the temporal lobes, parietal lobes, frontal lobes and occipital lobes, although not always necessarily in this order and with equal severity As a result almost all the symptoms of behavioral change discussed above can occur in certain stages of the disease. The nerve cell processes, which connect up the nerve cells of all these areas of the cerebral cortex, gradually become disrupted. On account of the extensive brain damage the Alzheimer patient’s inner picture of reality becomes distorted in comparison to that experienced by the healthy person. In healthy people that picture invests behavior with stability and a sense of direction and security. It is a criterion for new experiences. When that picture becomes disturbed, the patient can no longer relate the events going on around him to his personal memories, values and fixed ideas based on experience. His world, as he perceives it, is no longer the same world as that of the people around him. He loses his grip on things. He can no longer place what is going on around him in a context. He can no longer reflect before he acts. Everything he experiences becomes confusing, because he can no longer give it form and can thus no longer get it under control. He is virtually directly dependent on what is happening here and now. His environment and not he himself has an increasingly determinative influence on his behavior. He is like a ship without a captain. That is why he is so easily distracted by what is going on around him. That can irritate and frighten him. He lapses into repetition and stereotype behavior: he only has a few answers available for all the challenges of the outside world. He is a prey to events and the feelings which they excite in him. This leads to the utmost boredom and emptiness when there are no stimuli, to tension, anxiety and agitation when there are a number of confusing impressions and to agression when events overwhelm him. A person with severe brain damage feels extremely vulnerable. Many of the behavioral disturbances which occur in these cases can be accounted for as defense mechanisms. The patient tries to maintain and defend his integrity as a person against the perceived threats from outside with the limited means at his disposal. 3.3 PARTICIPATION IN SOCIETY Every community has written and unwritten rules to which the members must adhere if that community is to function as well as possible. The child already begins to learn these rules at an early age, but in our society he needs about eighteen years before he has mastered them sufficiently to be able to enter into society self-reliantly The community within which a person lives judges him on his behavior, and in particular on its social significance. Thus behavior is labelled good or bad, normal or abnormal, orderly or disruptive. Conversely the behavior of the individual is also influenced by the way in which he is treated by society. Under great stress even the healthiest adult may relapse into earlier, less adult behavioral patterns. A sudden shocking occurrence can cause a hysterical fit of weeping. Great personal sorrow can temporarily lead to behavior of total dependence. The greater the pressure of the circumstances, the more understanding the outside world has for the individual, if he collapses under the strain. For the Alzheimer patient almost every situation becomes stressful, even everyday events. The healthy person may have difficulty in understanding this.

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Changes in behavior in particular pose the greatest problems for those closest to the patient. This means that he becomes a stranger even to his nearest and dearest. Not being able to fathom what is really going on now in the once so familiar person, or what has led to the transformation, is especially frightening for his family and friends and can lead to guilt feelings in the partner. In order to gain insight into the changed behavior of the patient, it is not only necessary to have information on the nature and the course of the disease, but also to be familiar with the previous history and personality of the individual patient. The pathological process causes changes in the brain and that leads to the phenomena which occur according to a certain pattern. Knowledge of this process provides insight into the way in which the patient’s perception of his environment differs from that of the healthy person. But apart from the effect of these changes, the sick person’s behavior is also determined by the attitude which he takes to them. He does not accept them just like that. He tries to cope in his own special way. As a person he will try to give his steadily eroding world as much structure as possible. To try to make sense of something is a general human need. How each indiviual patient does that for himself depends on his character and his life experiences. Some patients undergo the gradual loss of themselves with comparative resignation and composure. For others the final submission to the inevitable only comes after an intense and desperate battle with themselves and their environment. For the caregiver that often determines the difference between an “easy” or a “difficult” patient. The “difficult” patients are precisely those who need the caregiver’s understanding and sympathy the most. They have the greatest difficulty in parting from the world and from themselves. In the last resort the behavior of the patient is also determined by the behavior of the caregiver. The latter must continue to treat the patient without continually confronting him with his inadequacies, which are the result of his illness. He must be able to accept the sick person without making demands which the patient cannot meet. The patient may have lost his interest in the world of things, but he remains extremely sensitive to evidence of human contact and sympathy. He may no longer recognize a name or even a particular face, but he remains sensitive to what is still important to him: a friendly face and gesture. Children can play happily with each other, even if they do not understand each other’s language. Alzheimer patients can usually get on well with children and vice versa, for the very reason that children are unconcerned and unprejudiced. 3.4 LOSS OF CONTACT Disturbing behavior always upsets somebody or something and interferes with a regular and orderly state of affairs. Disturbing behavior on the part of the patient irritates the caregiver who is responsible for him. However, from the patient’s point of view the caregiver is also a source of irritation. He fails to understand the caregivers intentions and interference. Why is he being bothered again, what do people want of him? It is part of the difficult task of the caregiver in these situations to influence the patient’s behavior in such a way that the desired goal of the care can be achieved with as little pain and difficulty as possible for both parties. In many situations the patient’s behavior is

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influenced by the behavior of the caregiver. A caregiver who is not professionally trained, needs expert advice in performing his or her difficult task. A caregiver who is less disturbed by the patient’s disruptive behavior emanates confidence and has a calming influence on the patient’s behavior. Past and present The patients changed behavior is his personal reaction to the change in his perception of the world. What does the world look like to an Alzheimer patient? If the caregiver has some insight into this, then he will be better able to understand the patient’s behavior. He will be better able to empathize with him and can provide better help. With Alzheimer’s disease connections between parts of the patients brain are continually being broken. Stimuli from outside do still enter the brain; the sensory functions such as sight, hearing and touch remain intact. But the ability to record the information coming in from the outside world and link it up and compare it with earlier information stored in the brain steadily decreases. Consequently the present gradually loses its connection with the past. The patient’s past and present increasingly come to lead their own existence. Fragments of the past still remain accessible for some time to come and start to lead their own life, divorced from the present, no longer called to mind by an act of will. When the pictures and impressions from the past can no longer be projected into the present, into ‘reality’, then they go off on their own. Thus images from the past can suddenly loom up out of the mist in the form of hallucinations. But for the patient the here and now, the items of topical interest which healthy people share with one another, become more and more incomprehensible and thus increasingly pointless. The world is topsy-turvy. The past becomes the present. The now confused and meaningless reality of the present is sometimes experienced as a frightening dream. It can also be compared to going into a movie halfway through the performance: all sorts of things are happening, but you have no idea what it’s all about. The unbearable reality The patient would at times really like to shut out that unbearable ‘reality’, which only causes confusion, by withdrawing from the outside world. But he cannot escape that reality, because the other person, the healthy person, continues to confront him with it. By the same token, the patient would at times prefer to avoid the other person, who sometimes looks at him with an uncomprehending gaze and asks him questions which he cannot grasp. On the other hand he does realize that he is dependent on that other person. He runs away from the caregiver, only to run after him again. The more the caregiver tries to make the patient understand certain things, the less the patient grasps. Both get irritated. There is a lack of understanding on both their parts and communication between them becomes completely disrupted. This can only be restored if the caregiver learns to understand the patient’s language. That language is his behavior in the broadest sense. Thus in many respects Alzheimer’s disease is a question of broken connections, of a loss of communication. The caregiver has the difficult task of finding new ways to communicate. In talking to the patient he must pay attention to the things which the

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patient can still talk about, to the subjects which are still within his grasp. The caregiver must meet the patient on his own ground. 3.5 LOSS OF DECORUM One of the more disturbing aspects accompanying the loss of the cognitive functions is the loss of decorum. This may sometimes occur quite early on in the illness. It is a facet of the impaired cognitive power which troubles the patient less than his family and the people in his environment. Decorum is the complex whole of formalities and rules, a code of behavior which is to a considerable extent culture-related. It is also partly bound up with social status, as for example table manners. If a person fails to keep to the rules, he is treated with less respect. Under certain circumstances some of these rules can be transgressed without this resulting in too much criticism from the environment, as for example stuffing food into ones mouth when in a hurry. Other rules cannot be broken under any circumstances whatsoever, for example defecating openly in the street. The loss of decorum often results in a person being treated with less respect by those around him. It can even lead to admittance to a psychiatric ward. In the beginning the Alzheimer patient is still aware of the changed attitude of those around him; he can experience a sense of shame and can also show it. The further the disease progresses, the more the self-criticism decreases. The family of the patient are then those who suffer the most from his lack of decorum. The patient is no longer aware of his loss. Sometimes there can be a remarkable combination of loss of decorum and a dignified and courteous bearing. The latter is often retained for a long time and makes the casual observer forget that the patient is demented. Sexuality Sexuality develops in humans into a means of expressing personal contact. The sexuality of the mentally adult person is integrated into his values as a whole. Because of its intimate nature it is surrounded by numerous taboos. With increasing age the nature and expression of sexuality undergo a change. Generally speaking there is a decrease in the frequency of sexual encounters between older partners, inspite of the fact that older people have a great need of physical intimacy. As a result of the gradual disintegration of the cognitive functions and greater egocentricity the Alzheimer patient’s possibilities of sexual expression become coarser. This has a negative effect on the partner. Moreover, the patient often fails to recognize the partner as the spouse. All this frequently leads to the patient being rejected by the partner, which can make the patient even more demanding. Some patients desire more sexual attention from their partner. Especially in the case of the man this can lead to agression and coercive attempts at advances, which can be very difficult for the wife to deal with. It is usually a sign of wanting more attention for attention’s sake. With other patients, all sexual interest entirely disappears.

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Sometimes the loss of decorum may lead to the patient making advances to friends or strangers, or using coarse language and uttering obscenities. That can be one of the reasons why the patient gets fewer visitors. With women there is sometimes more need of embraces, kisses and physical contact, such as sexual fondling. The partner may find this unpleasant. If he does not comply with the increased demand for attention, the patient gets angry, has fits of weeping or accuses him of having a girl friend. With women as well the loss of decorum can lead to approaches to a third party. The phase of heightened sexual activity is of limited duration and does not by any means always occur. In many patients the sexual activity has been diminished since the beginning of the illness and the sense of shame remains intact to the end. Particularly in a nursing home the loss of decorum with regard to sexual behavior leads to problems. The taboo which still exists in society about sexuality in older people also plays a large part in this. This often results in every expression of sexual need or intimacy amongst older people being mistakenly regarded as abnormal, unseemly or absurd. With patients in an advanced stage of dementia there is no longer a question of agressive, purposeful sexual behavior. Touching each other or the nursing staff does sometimes occur. This is more like the behavior seen in children and usually has no explicit sexual character. Making a grab at parts of the body of other patients or caregivers does not usually have any explicit sexual nature either. It is more an expression of the general infantilization of behavior. Other people tend to make more of it than it really is. This behavior is usually fleeting; the patient does it on an impulse, which ceases when the stimulus formed by the other person is no longer there. Problems only arise when the environment ascribes certain intentions to the patient, which he does not, and indeed can no longer have. 3.6 BEHAVIORAL REGRESSION Second childhood The behavior of the Alzheimer patient is in fact completely adapted to the way in which he experiences his world. It is based on his reality, not on that of the healthy person. The continuing disintegration of the cognitive functions means that they have a steadily decreasing influence on his behavior, which becomes increasingly regressive; the patient reverts more and more to behavioral patterns developed earlier as a child, but which are no longer adequate for an adult. To be in ones second childhood is by no means the same as the first childhood. For the male patient his wife plays to an increasing extent the role of his mother. The female patient may see a father figure in the caring husband. Healthy married couples also sometimes address each other as father or mother when they are older. Partners of Alzheimer patients usually have difficulty in accepting this imposed role, especially in the case of younger couples. Alzheimer patients gradually regress to the intellectual level of a young child. At that level an adult man-woman relationship is no longer possible.

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Defense mechanism As with other forms of brain damage, with Alzheimer’s disease behavior can occur which is comparable to that of a young child when it feels a threat to its awakening and vulnerable individuality. Just as with the child, these defense mechanisms protect him against events which evoke unbearable feelings or thoughts of powerlessness, guilt or inferiority. Rationalization is searching for an explanation for certain feelings, behavior or experienced failings, which the patient cannot tolerate. For instance, if he is asked something which he does not know or cannot do, he excuses himself by blaming his inability on his age, tiredness, headache or some other reason. Confabulation is filling up the gaps in the memory by recounting something which has not really happened. Sometimes this infilling consists of events which have taken place much earlier on in the patient’s life. Alzheimer patients sometimes confabulate to suppress a feeling of shame about their loss of memory. Somatization is the conversion of mental stress and conflicts into physical symptoms. Alzheimer patients sometimes complain of pain and of other unpleasant physical sensations, which are an expression of their mental problems. Repetition of the same question, persistence In the initial stage of the illness the patient can no longer remember what was said to him a few minutes earlier. That is why he continues to repeat the same questions: “Who did you say you were? Why am I here? What’s the time?” His aim is to continue to understand the situation in which he finds himself at that moment. He repeats the same question because he immediately forgets the answer and because he is no longer aware that he has already asked that question before. Some of the constantly repeated questions indicate vague anxiety and restlessness, such as: “When are we going home? What time is it? Where are we going?” These questions may be the preamble to great agitation; the patient keeps getting up and walking restlessly to and fro. He is oppressed by the situation and wants to do something to get rid of the tension. Asking questions is calling on the other person to help him in this situation. Sometimes, however, the endless repetition of the same question acquires the tyrannical nature of a persistent child. He agressively demands his partner’s undivided attention. If the partner does not go on answering him, then the patient becomes angry and agressive. This behavior is generated purely by the presence of the partner. It is an attempt to claim the other persons attention by means of manipulation, like a mischievous child. Each individual situation is different and calls for a different approach. Thus it is important to note whether the patient is restless or agitated. If that is the case, then his questions must not be ignored. He is in need of attention. There are various techniques which the caregiver can use. For example, he can write the answers to frequently repeated questions in large letters and few words on a large piece of cardboard and hang it up. Every time the patient asks the question, the caregiver points to the answer. Another possibility is to try to distract the patient by making him laugh. Or by giving him something which he can occupy himself with manually. He can also be given simple tasks, so that he feels he is involved in something. Sometimes it helps to go for a walk together. Sometimes it even helps to give him something to eat.

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It is not advisable to tell the patient beforehand about the event, such as a walk or a doctor’s visit. That only induces tension and continual questioning. It is this continual demand for attention which makes the caregiver’s task so difficult. He is practically never left in peace. His creativity is constantly being called on to find solutions. Negativism Another form of regressive behavior is the patient’s automatic resistance whenever his cooperation is needed for a necessary activity, such as washing himself or putting on clean clothes. If the caregiver persists, the patient only becomes increasingly stubborn and may even become agressive. It seems as though the will to cooperate is entirely missing. However, the patient does not know why his cooperation is required in a certain activity and does not see the need. He only knows that someone is giving him an order and feels that his freedom, in so far as he still has any, is being encroached on. The resistance becomes even greater when the caregiver is himself physically involved in the personal hygiene activities. The patient may think that he is being molested. This resistance to bathing and dressing sometimes continues into the late stage of the illness, when the demented person has absolutely no idea of what is happening to him. Attempts to force him to cooperate by, for example, having two people take firm hold of him, only increase the agitation. Consequently the care becomes more difficult, more time-intensive and moreover painful for the patient. Wandering and movement urge The human being has an inborn instinct to resist deprivation of his freedom of movement. Babies already do it. For instance, when they are held by the ankles, they wriggle until they are free. The apparently aimless wandering about in an enclosed space in the home or in the nursing home is also a form of regressive behavior. Toddlers, who have just learnt to walk, do this too. There is an inborn urge to move. The aimless wandering to and fro of the demented person has something compulsive about it. It is sometimes reminiscent of the restless pacing up and down of a caged animal. This behavior occurs more in the advanced stage of the illness. It may be accompanied by pulling at doorknobs, picking up and putting down objects and other purposeless activities. The patient still has a fairly large amount of kinetic energy at his disposal with which he can do nothing constructive. An additional problem is that he sometimes cannot sit down again, partly because he no longer knows what a chair is for. Walking in itself may possibly lessen a feeling of restlessness and tension. If he is prevented from doing this, by being strapped down in a chair, then the energy is often released in the form of screaming, banging on the chair and other forms of agitation. That does him much more harm than walking about. Two frail women are walking hand in hand at a rapid tempo through the broad corridor of the nursing home, gazing into the distance. From the other d irection come three other people. The two groups bump into each other and the two women have to let go of each other’s hand. Without

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taking any notice of her companion one woman goes on walking. The other woman stands still, very upset. She begins to cry, making angry, frightened gestures and uttering terms of abuse. Only when someone discreetly takes her hand and walks on with her, does she begin to calm down. One minute later she has already forgotten her own distress. Particularly in the later stage of the illness, the Alzheimer patient often has a heightened need and urge to move. Everything which impedes his movement is experienced as an intrusion into his private domain, as a deprivation of freedom. His personal space is determined by the direction in which he is walking at that moment. If his path is (too often) crossed and his progression is hindered, he becomes agitated. If someone also tries to stop him, then he gets angrier still and may hit out at those trying to stop him. Demented people can walk to and fro for hours on end. In the nursing home they walk into other patients’ rooms, where they open drawers and cupboards and take things with them. This roaming and searching has something fanatical about it. It happens entirely involuntarily. Unfortunately it not infrequently leads to the patient being strapped down or sedated (given a tranquillizer). The patient may well enjoy still being able to walk, the only spontaneous activity still left to him. Motor action helps to decrease restlessness and tension. At times when he is not agitated, he walks more slowly, stiffly, with small steps and slightly bent. The time will soon come when he cannot even do that any more. In the late stage of the illness general physical stiffening increasingly immobilizes the patient. At most he is only able to move his legs up and down. If he then becomes bedbound, he will soon be incapable of doing even that. As long as it is at all possible, the patient must be given room for motor activity. The alternative is a premature state of complete invalidity. Apart from shouting, roaming about is the only form of activity still available to the sick person at this advanced stage of the disease. This last and most elementary freedom of movement is denied him if he is deprived of the room to move through the use of permanent restraint bands or tranquillizers. The aim of the caregiver should be to adapt the patient’s living space to his needs and possibilities and not vice versa. 3.7 THE ALZHEIMER PATIENT’S PERCEPTION OF HIS ENVIRONMENT Observing and making sense If our brain changes, that influences our memories and observations. It often happens that if we visit a place where we have lived as a child and have not been back for a long time, it looks different to what we had expected. That is because our perception has changed after all those years. The instrument of perception, our brain, has changed just as the rest of our body. If we feel frightened or depressed, we see the world differently from when we feel happy and cheerful. Our brain works differently under the influence of strong emotions and that changes the way in which we perceive the world.

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With Alzheimer patients the brain functions are very unstable. Thus perception also becomes unstable. There are periods in which the patient does not recognize the people in his closest circle. His own house and his own family look strange and different. When he says: “I want to leave, I want to go home”, he means that he wants to return to the house with which he is familiar. He wants to go back to the house he once knew, when he was healthy. Because he does not realize that it is his perception which has changed, he thinks that he is not in his own house. That is a delusion, by means of which the patient is trying in his own way to make sense of a world, which for him is no longer recognizable. If people try to explain to him that he is indeed in his own home, then he literally cannot believe it. After all, he doesn’t recognize the house. Thus it cannot possibly be his house. He wants to get away from that strange house, to go outside. He can spend hours roaming about looking for his familiar home. If anyone obstructs him, he becomes panic-stricken, may get furious and start to shout. The world then becomes even more frightening for him. Fear is one of the most important causes of disturbed behavior in the Alzheimer patient. The patient’s greatest and persistent fear is the fear of losing himself. Disturbed perception also sometimes leads to not recognizing members of the family It can happen, for instance, that because of disturbed perception the patient thinks his spouse looks strange. She resembles his wife, but he misses the feeling of familiarity. This can result in his thinking that this woman is an imposter, who is pretending to be his wife, and he therefore refuses to go into the bedroom with her. Other members of the household are not recognized either. “There are strange people living in the house. What are they doing there?” At a later stage of the disease he does not even recognize his own reflection any more and he starts to talk and gesticulate to the strange other person in the mirror, who is continuously following him. Sometimes he is unable to distinguish between reality and what he sees on the television screen. He no longer realizes what a TV really is. He believes that the people on the screen are actually present in the room and are talking to him. Accordingly he is especially frightened by scenes of violence on TV. He can however sometimes still appreciate a children’s programme or a show with music. Delusions, illusions, hallucinations and personal disorientation Delusions are thought disturbances; they occur generally in patients suffering from Alzheimer’s disease. In the delusion the patient explains what is going on around him in a way which does not correspond with reality. Particular delusions occur with Alzheimer patients. Thus he may think that other people are stealing money or possessions from him, that his wife is unfaithful, that he can no longer trust his friends, that there is a stranger in the house, that he is being abandoned by his family, that he is in a strange house while he is actually at home, that he has talked to his (deceased) parents, that he is being poisoned. Because the delusion is the result of disturbed thinking, the patient cannot be reasoned with to see things differently. The disturbance in his thought process is partly the result of the fact that his perception, which provides the material for his thought, is also disturbed. The disturbed perception also leads to the occurrence of illusions, whereby the things which are observed are wrongly interpreted. Most Alzheimer patients in the more advanced stages of the disease no longer look in the mirror, partly because actions such

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as shaving, combing their hair and putting on make-up are done for them by the caregiver. In the late stage of the illness the patient no longer recognizes his own reflection and thinks he is looking at a stranger. The reflection can then become a threat. Sometimes the patient takes a look behind the mirror to find out where the person has gone whom he saw in the mirror. If the patient is confronted with his own reflection every day from the onset of the illness, it probably may remain familiar to him for longer, even when he no longer knows that he is looking at himself. He will be less frightened by it and will not suspect the person with whom he is suddenly confronted of agressive intentions. At night sometimes reflections in a window, or wind-stirred branches outside the window can make him think there are strangers in the house. Drawn window shades and drawn curtains can obviate these illusions. Finally patients may sometimes be frightened of their own shadow, which is like a stranger incessantly following them. Hallucinations are also a form of disturbed perception. To hallucinate is to see, hear or feel things which are not present in reality. Thus Alzheimer patients sometimes seem to be talking to someone, though there is nobody present. Or they think that they have something in their hands, which they are feeling and turning round and round, while their hands are in fact empty. Sometimes they seem to take imaginary objects out from under the bedclothes. When the patient can no longer experience the reality of here and now, it is quite possible that pictures from the past thrust themselves on him so forcibly that they acquire the character of reality. Delusions, illusions and hallucinations are closely connected with one another, so that it is often difficult for caregivers to recognize them as such and distinguish them one from another. Disorientation in time As we grow older, we often have a different perception of time. Although past and present actually become further and further apart, it feels as though they are coming closer together. Because many of the older persons life processes, including thought, have now slowed down, time seems to pass more quickly for him. He finds new events and changes in his environment more difficult to keep up with than younger people do. The Alzheimer patient can scarcely follow what is going on around him any more. He can no longer live for the future and has difficulty in living in the present. Memories from the past, especially emotional experiences, remain accessible for the time being. They can still give meaning and purport to his existence in the present. For the Alzheimer patient past and present overlap each other to an increasing extent. The past fills up the void of the present. For him time stops here. Happenings from the past are interpreted as though they are taking place here and now. For the patient this may mean, for example, that his late mother is now really with him, or that he has to go to work, though in fact he stopped working years ago. With these delusions or false beliefs the patient shields himself against the reality which he no longer understands and this can give him a certain feeling of safety. Trying to bring him back to reality is trying to bring him back to a situation of which he can make no sense and in which he is therefore completely helpless. The patient can no

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longer be “brought to his senses”, because his senses are failing him. Such attempts only make him more distrustful. It is usually more effective to play along with his illusions and to steer the illusion in a particular direction. This can best be illustrated by an example. A demented patient, who had been admitted to the psychogeriatric ward, was continually walking into the rooms of other patients. He then tried to remove feeding tubes or intravenous tubes. When the nursing staff tried to restrain the patient, who had himself been a doctor, he got very cross and stubbornly resisted. Until a nurse had him with her on her round of the patients and reacted with: “Doctor, you just said that you want to keep the feeding tube in for this patient and I entirely agree with you.” The patient replied: “You are quite right,” and walked on. His authority and his dignity as a doctor had been confirmed. From this example it is apparent that certain behavior can be explained if the caregiver is aware of the patient’s life history. Illusions are often the patient’s only possibility of making sense of what is happening around him. As long as the outside world does not tactlessly confront him with his mental defect, he can be comparatively contented. By playing along with the patient’s illusion when talking to him it is possible to make contact with him and to avoid immediate resistance. Certain illusions are harmful for the patient. In that case the caregiver naturally cannot accept the illusion. Frightening or painful experiences, such as war memories, can be reexperienced with great intensity. Thus a patient who had survived a concentration camp experienced being strapped to her chair as a form of torture. She imagined herself back in the camp and became extremely agitated. Disorientation in space To be able to orientate oneself in space implies knowing where one is: at home, in a hospital, in a hotel or in a nursing home. We do that by observing our environment, comparing this observation with observations from the past stored in our memory and drawing a conclusion from the comparison. When we are in an unfamiliar location we can also orientate ourselves because we know why we are there and how we got there. We can make a connection between the place where we are and the events preceding our getting there. With the Alzheimer patient all these components—observation, memory and the ability to draw a logical conclusion—are disturbed. When the patient leaves the house and starts wandering about, he is looking for his house as he remembered it from earlier on. As a result of his impaired power of observation his own house seems strange to him. He wants to return to the house with which he is familiar and resists attempts to prevent him from going out to look for that house. At the beginning periods of disorientation still alternate with lucid moments when the environment again seems to have something familiar about it. The experience of desperation, which accompanies the loss of orientation, can to some extent be compared with dreaming that one has lost the way and cannot find it again, however hard one looks. The way in which the Alzheimer patient experiences the world sometimes resembles the way a dreamer experiences it. Just as the fabric of the dream, much of his world consists of fragments, of disconnected snippets, which he is no longer able to link together. His behavior is often the expression of that

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incapacity and of the panic which it engenders. At the same time it represents an appeal to another person to help him. Some patients go outside in their pyjamas in the middle of the night and ring the neighbour’s bell with an incoherent story. Or they call directory enquiries, give their own ‘phone number and ask if they still live there. Confused behavior as a consequence of an inability to make connections Confusion is reminiscent of serious absent-mindedness. Activities, which consist of certain actions carried out in a certain order, are performed in the wrong order, in a haphazard way. Or some of the elements of a sequence of activities, which together constitute an action, may simply be omitted. A nursing home inmate walks towards the toilet, which has “Toilet” on the door in large letters. When he gets there he urinates against the toilet door. The patient can still read the word ‘toilet’. He can also connect this with a place where he can relieve himself. But what you have to do first—open the toilet door, go into the toilet and use the toilet bowl—these actions are missed out. There is a short-circuit. Sometimes the wrong connections are made. An example of this is a patient who goes to the toilet after a meal. She is at the same time bothered by scraps of food lodged in her dentures. She takes her dentures out of her mouth and rinses them in the toilet bowl. As long as the patient can still make connections between certain elements which together form one particular activity, it is important to help him to carry out the necessary steps in the right order and to allow him to perform the component actions independently. This prevents certain forms of deviant behavior and keeps the patient functional as long as possible. If, on the other hand, the caregiver completely takes over the entire action, this soon leads to total passiveness as regards the patients functionality. Emotional reactions How does the sick person experience his changed world emotionally and how does he react to this experience? In the very beginning of the illness, when the patient’s insight into his own situation has not yet been clouded by serious loss of the cognitive functions, he reacts with frustration and a vague feeling of anxiety and slight bewilderment. He begins to withdraw from his environment. Certain symptoms of depression, such as apathy and being quickly irritated when he cannot do, or does not know something, may then be evident. In that early stage it can be difficult even for the doctor to distinguish depression from Alzheimer’s disease. Withdrawal is a defensive reaction, which serves to protect the patient from being so frequently confronted with his loss. When the cognitive functions become further impaired, it begins to be noticed by his immediate circle, spouse, children or close friends. In daily contacts the patient is increasingly confronted with people who are worried by his forgetfulness and periodical confusion. It can no longer be concealed. Withdrawal no longer works. He cannot and will not admit that his reason is gradually deserting him. To lose your reason is to lose yourself. There is now only one possibility open to him: denial—to yourself and to others—that anything is the matter. But how can

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you go on denying the problem, when you are increasingly confronted with the fact that your conceptions do not agree with other people’s? By coming to believe that other people are against you. Therefore you have to defend yourself. Your conviction is strengthened when the other person sometimes shouts at you or gives you orders. Nobody likes to be ordered about. If someone compels you to do something against your will, such as washing and dressing yourself, then you get cross and start to shout if the other person insists. Or you burst into tears of distress and impotence. If someone then pulls you into the bathroom against your will and begins to undress you, you start to struggle and hit out. Even if it is your own husband or wife or child, indeed in that case it’s even worse. They really ought to know better. After all, you’re not ill. You’re not interfering with them. Why can’t they leave you alone? You simply can’t make the situation out. Evidently they don’t like you any more! They must want to get rid of you! Perhaps they want to put you into a nursing home! At moments like these you find yourself sinking deeper and deeper into the morass. Thus the sick person begins in the first instance to distrust those in his immediate circle and his caregivers. If he has forgotten where he has put his belongings, the mechanism of denial of his loss of memory forces him to believe that they were stolen. He may then believe that strangers have forced their way into the house to rob him. But he can also give his own family or caregivers the blame. Sometimes the patient becomes increasingly agitated. His distrust can make him believe that his partner wants to get rid of him. He starts thinking that there are other people in the house who don’t belong there. The confrontation with his own increasing helplessness, inadequacy and dependence, together with feelings of mistrust, can lead him to be suspicious of his spouse. Pathological jealousy can also arise with regard to other people who are seen as rivals. Aloïs Alzheimer’s patient exhibited this jealous behavior as the first sign of the disease. It can happen that the partner is not allowed to be alone even for a moment. He or she only has to talk to another man or woman for this to lead to accusations of infidelity. The patient may openly accuse other people of making advances to his or her spouse. This can in turn result in the patient having fits of rage, mostly directed against the partner. It is usually the people who do most for the patient, who bear the brunt of his anger, because he is frightened of losing them. The patient often tries in a variety of ways to cling to everything which can give him protection: his spouse, his money, even the clothes he is wearing. Attempts to convince the patient that he is in the wrong only generate more fury. The patient’s feelings are not rational, nor are they open to reason. The patient can no longer share his experience, his world with the other person and the other persons world becomes increasingly inaccessible to him. An additional factor is that his ability to express himself is on the decrease, because he is losing the use of language. He often fails to understand what another person says to him. A continuing lack of communication leads to an increasing feeling of loneliness. Sometimes he is overpowered by a feeling of great loss, of utter helplessness. That can be the cause of fits of weeping which may last for hours. If someone asks him why he is crying, he cannot give an answer. He cannot express himself in any other way. There is no point in reasoning with the patient in this situation. He does not understand you and it only heightens his feeling of impotence. It is often much more effective to show affection and empathy and to try to distract him.

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Disturbances of the day-night rhythm The disturbance of the patient’s day and night rhythm can form one of the greatest problems, both for himself and for the caregiver. The patient is awake a great part of the night and often sleeps during part of the day. That is partly caused by disorientation in time. But the disease can also lead to changes in the part of the brain concerned with regulating sleeping and waking, in particular the hypothalamus. When healthy people wake up suddenly, they are sometimes confused for a moment. But after a very short time their ability to make connections between the unexpected incoming impressions is restored. The healthy person quickly regains his grip on the world. But when an Alzheimer patient wakes up, he is incapable of giving anything any structure. He remains confused and becomes agitated. He does not know whether it is day or night and fails to understand why it is so quiet. Perhaps he was dreaming before he woke up and imagines he is still in the dream world. He searches for orientation points. He wakes up other people, who must help him in his search. There are other, generally occurring causes of waking up, such as: the urge to urinate. On getting out of bed the urge increases and the need to urinate becomes urgent. The demented person who does not know the difference between day and night and who is agitated and confused, gets out of bed and has an intense urge to go to the toilet. If he cannot find the toilet, his restlessness increases. He may then wet himself or relieve himself in the room. He may fall if the room is badly lit, especially if he is agitated. He may also be hungry or thirsty and go to look for food. If he has eaten something, he may go and get dressed, assuming that it is now day and he must go to his work. Thus the nights can be difficult and both patient and caregiver become exhausted. A good night’s rest can be promoted by activating the patient adequately during the day and fitting in short periods of rest. If the patient is overactive during the day, he gets so worked up that he cannot sleep at night. If, on the other hand, he is inactive during the day, he does not get tired enough. Since bladder problems can be the cause of nocturnal restlessness, it is important that the patient’s urine is regularly tested. Patients, who do not sleep at night and do not want to go back to bed, are sometimes less restless if they have something to eat and drink and stay up for a little while. If they are given the opportunity of talking, they often become calmer. Playing soft music or a quiet voice on tape saying “it is ten past three, it is the middle of the night, go and have a good sleep now”, sometimes help. A doll or teddy bear in bed can sometimes have a soothing effect on the restless patient. The ‘Sundowning Syndrome’ The gathering darkness after sunset can make small children restless. The things around them lose their structure and acquire something indefinite and vaguely threatening. Adults sometimes have an indefinable feeling of uneasiness if it unexpectedly gets dark with a sudden thunderstorm in the middle of the day. For the dementia patient the gathering darkness can cause a great deal of restlessness and uneasiness. He does not know when it is morning, afternoon or evening. When it gets dark, the existing visible world disappears in a comparatively short space of time. Change is always frightening to an Alzheimer patient, who anyway has great difficulty in giving

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form to his world. Indoors the daylight is replaced by artificial light, which causes everything to look different. In the reflections in the windowpanes he sometimes sees strange people outside, who don’t seem to go away. The patient becomes restless, wants to leave the frightening environment, starts pacing up and down and gets increasingly agitated. The chair-bound patient tries to stand up. The bedridden patient starts calling out. In the nursing home the patient frequently gets less attention, since there are less staff on duty in the evening. The patient is often frightened of being alone. He needs a reassuring gesture or the touch of a hand and the sound of the human voice. He often becomes calmer and feels safer if the room is well lit. The presence of other quiet people around him can also have a soothing effect. Often the patient is overtired after yet another day full of confusing and stressful happenings. It is important that he does not need any further extensive care at that point and that he is in a tranquil environment, without loud radio or television sounds or other noise. 3.8 RE-ESTABLISHMENT AND MAINTENANCE OF CONTACT The conversation The loss of the ability to express oneself to others by means of words and to understand other peoples words is a catastrophic occurrence, which greatly influences a person’s behavior. It always means loss of communication. In the initial stage of Alzheimer’s disease the patient often has an inability to recall certain names and words. Sentences are often left unfinished, he becomes increasingly repetitious and long-winded. Sometimes he loses the thread of a conversation and switches to a topic of his own. Sometimes he unexpectedly harks back to a subject which had been under discussion some time before (intrusion). As the disease progresses words lose their meaning for the patient. He can still say the words and sometimes still read them, but his conversation more and more ceases to have any content. Words which he picks up from his environment are sometimes used straight away in his conversation. Sometimes he replaces certain words by other words which sound more or less the same. His conversation becomes increasingly incomprehensible. Some patients talk non-stop, others become extremely taciturn. The patient also has increasing difficulty in understanding the spoken language. Finally he is only able to say a few words, which have to express everything that’s in his mind. Sometimes when he is agitated, he rapidly repeats a certain word, a certain syllable, or just sounds. Nursing activities are normally prefaced by a chat, in which the purpose of the activity is explained to the patient. He then understands what is going to happen and can agree and cooperate. For Alzheimer patients this gives rise to problems, because they cannot understand the caregiver’s explanation of the activity. Nor do they see the point of the activity. In such a situation the chat serves more as a way of making contact, a personal encounter, than as the preface to an activity. Here too the patient’s agreement with, and cooperation in the activity remain the object of the exercise. From the very beginning it must be directed towards winning the patient’s confidence.

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The caregiver must take time for the talk. The environment must be restful. Harsh background noises such as loud music or slamming doors, continual interruption of the conversation by third parties are distracting and agitate the patient. The attitude of the caregiver must inspire calm and confidence. Busily pacing to and fro makes the patient uneasy. The subjects of conversation are limited, but there is always something to be found which interests the patient. If the patient himself begins the chat, then what he says is important to him, even though it is incoherent to the listener. A particular word or sentence spoken by the patient can be taken as the starting point for a reply. It is not always easy to discover what he might mean. Every answer given by the patient is ‘good’ and deserves a positive reaction from the caregiver. Continually interrupting the patient to corrrect him certainly does not stimulate him and may dishearten him. Contact is furthered by using short, simple sentences and encouraging the patient. He cannot answer complicated questions. Nor can he cope with questions which he must reflect on, which begin with: “why’, “explain” and which require the use of previously acquired knowledge. He only understands simple, straightforward questions. Speaking in an authoritative or commanding tone or making demands and the use of the word “must” are understandably sources of irritation to the patient. Breaking down anxiety The Alzheimer patient has an easily awakened, indeterminate feeling of insecurity and of being threatened. A feeling of anxiety can abruptly be provoked by certain situations. In some cases it can lead to acute panic. It is accompanied by certain physical symptoms which can aggravate the anxiety even further. Anxiety is a warning signal that danger threatens and brings the body into a state of intensified alertness. Fear is a reaction to a known threat which comes from outside. Anxiety and fear lead to behavior which prepares the body to evade or eliminate the threat, to flee or to fight. Anxiety about the deprivation of freedom is already present in a baby; if he is taken hold of by his ankles for any length of time, he starts yelling and instinctively offers resistance. The adult has learnt to meet the threat in a more specific way, better adjusted to the situation. But when the cognitive functions are impaired, a primitive, maladjusted pattern of reactions emerges once more. With the Alzheimer patient a vague, indeterminate feeling of anxiety is almost always present and accompanies the gradual erosion of his person. The inward anxiety, which the patient experiences, stems from his apprehension of the disintegration of his mental and physical functions and comes to the surface every time he is confronted with his own break-up. No longer being able to answer simple questions, failure, rejection, negative criticism, uncertainty, vague feelings of guilt, feeling shut in, being alone, being shut in or strapped down, being hindered in his movements, fear of the dark, noise—these are all concrete situations in which anxiety can occur. In fact almost anything can be frightening to the Alzheimer patient. Since the patient can no longer understand the nature of the threatening situations through his intellect, he cannot reassure himself. The result is that his feelings of anxiety

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cannot disappear and he feels himself increasingly weak and helpless. Sometimes the anxiety can be so sudden and intense that he goes mentally and physically rigid. For instance if he is taken hold of suddenly. In other situations an indeterminable anxiety forces him into aimless pacing to and fro. Apprehensive patients do not put themselves into the hands of a caregiver whom they are afraid of. Accordingly the first objective in making contact is to break down the anxiety and thus gain the patients trust. That is why the way in which the patient is approached is so very important. The caregiver himself must not exhibit any signs of uncertainty or anxiety, otherwise this will be transmitted to the patient. However frightened the patient is, he continues to be aware of his dependence on the caregiver. Up unto the very last stage of the illness he remains receptive to signs of affection. Being affectionate is therefore the best way to gain the patient’s confidence. If the caregiver starts by sitting at the same eye level as the patient, that promotes good eye contact and the possibility of touching the patient. Inviting body language, a friendly smile and manner of speaking are more important than what is actually said. It gives the patient the opportunity of calming down. This is particularly important at the beginning of a care-giving activity. A caregiver, who does not yet know the patient, can best introduce himself by using short sentences: “My name is…, I am…” “I should like to talk to you.” “What is your name…?” “Are you married?” Gauge the level at which the patient can carry on a conversation and play along with him. Even though the patient may not be capable of communicating anything understandable, go ahead as though what he says is clear. Just let him keep on talking. Once contact has been made, this can be furthered by touching the patient caressingly while continuing to talk and look at him. Sometimes the patient will take the caregiver’s hand and express his attachment by kissing him on the cheek. The caregiver can accept that as a token of the patient’s trust. Respecting the individuality of the patient, listening to him and giving him confidence are the prerequisites for making contact. Guiding the patient towards a goal by interaction through word and gesture The Alzheimer patient has difficulty with sudden changes and confrontations. Both his body and his mind involuntarily put up resistance to these situations. If the caregiver unexpectedly or brusquely takes hold of him, a reflex stiffening of the muscles occurs, which impedes the intended movement. This stiffening of the muscles does not occur when the extremities and the body of the patient are slowly and gradually moved. A somewhat comparable reaction also occurs with verbal contact. When the patient is confronted with a task which comes across as a command, he immediately puts up resistance. He often does not understand the task and cannot form any idea of how to go about it. Continuing insistence by the caregiver makes the patient irritated and recalcitrant. In such cases the caregiver can steer the patient in a playful manner towards the goal such as bathing or going to the toilet. He begins with an introductory chat, in which he actively involves the patient by letting him talk about a random subject. Personal events from his past are often suitable, since he may still remember them. The caregiver reacts with interest to what he says and endorses it. If, in

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the course of the conversation, the caregiver slowly stands up and reaches out a hand to the patient, then the latter will usually take the hand and stand up too. Still talking and without much change in the tone of voice or posture the caregiver asks the patient if he knows where the bathroom is. Having arrived there, he asks him if he can read what it says on the door, whenever it carries a sign. He can encourage the patient by paying him a compliment. The caregiver keeps an unconstrained conversation going with the patient. He then points to the bath and asks the patient if he knows what it is, what it is for and whether he sometimes goes in it. He takes a good look round the room together with the patient. He gives him simple instructions for each step separately, such as first undoing the buttons, then taking his arms out of the sleeves. In the meantime he encourages him by saying: “I know you can do it by yourself.” In this way the caregiver can fairly easily discover what the patient is still capable of doing and the patient does not feel threatened and does not try to resist. 3.9 RE-ESTABLISHMENT AND MAINTENANCE OF DECORUM If it has once been accepted that behavior, which leads to loss of decorum, is inextricably bound up with the pathological process, then the patient will no longer be regarded and treated with disrespect. If someone is disoriented with regard to space, time and person, certain necessary activities can no longer be associated with certain places or moments of the day. That explains why a patient may urinate in a flower pot or take his clothes off during the day and put them on at night. The actions have been detached from their context. Thus loss of decorum does not mean that the patient has no feeling of shame. He must therefore never be reprimanded or ridiculed in public in such cases. Decorum means outward dignity. It is part of the caregiver’s task to help the patient to maintain this as long as possible. The behavior resulting from loss of decorum as observed in the patient is mistakenly judged by criteria which apply for healthy people and thus also for the caregiver. Because the patient is completely helpless, his life is in fact arranged to a great extent by the caregivers, even including the most intimate aspects. That is humiliating enough. He need not be reminded of his loss of decorum yet again because of someone’s thoughtlessness. The patient’s decorum is for the most part really determined by the behavior of the caregiver and anybody else around him. Through our attitude we can help the demented person to re-establish and maintain his dignity. The professional caregiver must be interested in the personal life history of the patient. Only then can he really appreciate the unique value of the patient. Only then does the patient come to mean more to him than simply a demented old man or woman. He should address the patient in the way he or she has been used to and should refrain from using forms of address such as “Granny” or “Deary”, even if it is well-intentioned. This represents a violation of a persons individuality and leads to categorization. The patient must not be categorized. He should be called by his own name. If he never hears his own name any more, he will completely forget who he is. The caregiver must continually observe the patient’s verbal and non-verbal pattern of conduct. It often contains signs of imminent action, such as pressing the hands into a fist

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and a contorted facial expression to herald a bout of shouting and hitting out. These are signals, with which the patient indicates feelings and needs, which he can no longer express in words. Every patient has his own sign language with which the caregiver must be familiar. The interests of the patient must always be the focal point. He should be involved as much as possible in everything going on around him which directly concerns him. It is, however, incorrect to discuss the behavior and illness of the patient in his presence if he cannot participate in the discussion himself. The same applies to discussions with his relatives. While the caregiver is attending to the patient he must involve him in the activity and talk to him and not allow himself to be distracted by other matters. He must as far as possible allow the patient to do things himself, which he is still able to do. He must not patronize him and must allow him to speak for himself. If the patient is unable to provide certain information which is necessary for the nursing process, then this should be obtained from a relative or close contact. As has been said before, this applies above all to the professional caregiver, especially in the nursing home. It is not necessary to pass on indiscriminately to third parties all the patient’s sayings and actions. It is important that the professional caregiver is selective in what should and should not be reported and to whom. An objective and accurate account, without exaggeration, is absolutely essential. After all, on the basis of this information decisions are sometimes taken which have important consequences for the wellbeing of the patient, as for example the administration of sedatives or strapping him down with a restraint band. It is not necessary to panic or get embarassed if loss of decorum occurs in the presence of others, nor should the patient be hastily dragged away if there is an ‘incident’. The patient is not conscious of what he does or says. The caregiver need not feel ashamed because ‘his’ patient has exhibited disturbing behavior. It is pointless to rebuke the patient and can at worst lead to confusion and agression. When helping with bathing and dressing the manner of physical and verbal contact with the patient is of great importance. The performance of necessary actions, such as dressing, is often difficult because the patient will not let the caregiver touch his body. The patients physical and verbal resistance in such cases can be forestalled by first touching him gently and then gradually taking a firmer hold on him. While the patient is being attended to the caregiver talks to him quietly and encouragingly. A reproving or peremptory tone must be avoided; nobody wants to be ordered about. The patient must also be given as much privacy as possible by making use of bedcurtains and closing the doors of the toilet, bathroom or bedroom during the necessary care. Further it must be realized that to a great extent the patient is judged by his outward appearance. Day and night clothes should be changed at the appropriate time. This can contribute to better orientation in time. Feelings of powerlessness Both the patient and the caregiver are powerless in their own way. But the feeling of powerlessness which sometimes understandably overcomes the caregiver must not be

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allowed to degenerate into abuse of authority. Too much emphasis or efficiency may lead consciously or unconsciously to abuse of power. This does not usually save any time, because the patient will resist the caregiver even more. The caregiver must not be tempted into imposing his authority. It is precisely authoritarian behavior which the patient finds so difficult to cope with. Ignoring the patient, letting him wait about, indiscriminately strapping him down or sedating him to compel his cooperation are always a mistake and not to be justified. The better the caregiver understands the patient, the less need he will have of ‘rough’ remedies. Imitating the patient’s behavior with colleagues, whether in the patients presence or not, is thoughtless and inconsiderate. He must never be the object of pitying smiles or cheap jokes. The feelings of the patient’s family should also always be respected. Members of the family have every right to make their opinion and feelings known and to act accordingly. If they do not visit the patient, they may have perfectly legitimate reasons for not doing so. If the caregivers misinterpret their intentions, this has a negative influence on the relations with the patient’s family and ultimately on the patient himself. If the professional caregiver succeeds in the way described above in helping the Alzheimer patient to maintain his dignity and re-establish his decorum, he is contributing to better integration of the patient in his environment. It also has a favorable effect on the patient’s remaining selfimage and on the way in which he is regarded by his family and friends. Consequently the patient’s behavior can be considerably improved. Especially if all the caregivers involved with the patient are geared to one another in this respect. Unhampered freedom of movement, rest and regularity In one of the wards of a certain nursing home the patients have a free hand. They often walk unhindered into someone else’s room, lie down at random on each other’s beds, look in cupboards and seem to be reconnoitring their surroundings. Measures have been taken to forestall situations which are potentially dangerous for the patient. The temperature is comfortable, hallways and rooms are bright and quiet. There are handrails on both sides of the walkways which are especially for the patients, without obstructing traffic. The patient is allowed to open doors freely and enter rooms. He walks on comfortable shoes instead of slippers. Every patient wears an elegant watch, with a builtin alarm system, which under certain circumstances produces the sound of a gently purring alarm clock. For instance, if the patient approaches the door of the elevator, the signal goes off. This sound diverts the patient, who usually reacts by walking on. At the same time a signal comes through in the ward office, where the patient can be observed via a monitor. In order to prevent ambulatory patients from getting too tired, a number of chairs with arm rests have been placed in the corridors. Above the chairs hang notices in large letters saying: TAKE A LITTLE REST. If the patient is no longer able to think of sitting down by himself, then the caregiver makes a gesture towards the chair or accompanies him to it. Everything goes smoothly, peacefully and naturally. The only obligation is a forty five minute rest period after lunch. From a central point all the lights in the wards are dimmed as the sign for rest. Ambulatory patients find themselves somewhere to sit and chairbound patients sit in small groups. The staff also rest. Nobody walks to and fro.

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Both ambulatory and chairbound patients need a rest period, because they get tired by periodical agitation and the urge to move and by loud domestic noises. The right balance between rest and freedom of movement is important. Overtiredness can result in restlessness, agitation, falling down, waking at night and sleeping in the day and no longer being able to laugh. When the partner and the family come to visit, they find a patient with whom there is nothing more they can do together, though both parties are particularly in need of contact. 3.10 THE PATIENT WITH SEVERE DEMENTIA In the late phase of Alzheimer’s disease the patient is often to be seen walking with his arms thrust out in front of him, gazing tensely ahead of him. If he comes across a chair on the way, he will first feel the back and then the seat. He bends over as though inspecting the underneath of the seat. He walks round the chair and then stands still again next to the chair. He continues his stroll with the chair ritual being regularly repeated. The chair has become an unknown object for him and he no longer realizes that he can sit on it. The connection between the chair and sitting down is no longer made. The patient has to go on walking until someone helps him to sit down, or until he falls down from exhaustion. Putting up resistance An Alzheimer patient is sitting in his chair clutching the armrests with both hands. He gives the impression that he does not want to get out of the chair. The caregiver tries first with words and then by means of a lifting technique to get him onto his feet. The patient continues to hold on firmly to the armrests. He does this involuntarily. Especially in the later stages of the illness reflex actions occur whereby, for instance, if the patient gets something in his hands, he takes firm hold of it and is sometimes unable to let go of it again. This also applies to the armrests of a chair. If someone pulls his arms, then his grip tightens all the more. There are certain techniques to loosen the clutching hands: Sit down quietly obliquely opposite the patient without showing any impatience. Speak quietly to him and at the same time gently rub the back of his hands, underarms and wrists with caressing movements. Gently and repeatedly tapping the back of the elbow may give the same result. This stimulates the stretch muscles of the underarm, fingers, and wrist, usually resulting in unclenching of the fist. Then calmly take hold of both his hands. The grasping action is now transmitted to the hands of the caregiver. Remain standing still with the patient and go on rubbing the back of the hand with the thumbs. Be careful to avoid stimulating the palm of the hand as this reinforces the reflex action. Repeat this process while walking until the destination has been reached. Loss of ability to walk and stand In the final stage of the illness the patient loses the ability to walk. At first he can still walk short distances very slowly with the help of the caregiver, but at the last he can no

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longer stand on his legs. The power of speech has completely disappeared. The patient is now confined to the wheelchair, the mobile reclining chair or to bed. His behavior is now impersonal and stereotype and he can at most express pleasure or displeasure. His activities consist entirely of self-stimulation. He can spend hours plucking, sucking or biting the bedclothes, touching his genitals or smearing feces. He still often reacts negatively to the caregiver’s activities, especially washing and dressing him. Periods of prolonged groaning or shouting may occur, which are often connected with physical discomfort and pain. Continual muscle contractions and stiffened joints can make moving and turning in bed, both actively and passively, most painful. Touching the patient caressingly can often still give relief. The patient is now more helpless than a newborn baby. 3.11 SUMMARY Man’s behavior is the expression of everything which lives within him: his thoughts, aspirations, desires, emotions and impulses. Every human being is born with his impulses and his characteristic temperament. Through training the child learns to develop his budding emotional life and to control his passions. Through training he also learns to develop his physical functions. This is the way in which motor memory and habitual behavior are moulded. Through the ever better developed cognitive functions the child learns to acquire insight into the how and why of his actions. The behavior of the healthy adult is purposeful behavior, his impulses and feelings are guided by reason. This enables man to function as an individual in society. Normal development of the brain and the cognitive functions is a prerequisite. If the brain is damaged during or after its development, regressive behavior occurs; this behavior exhibits characteristics of earlier stages of development. For the adult this type of behavior is inadequate. Disturbances of certain parts of the brain can cause more or less recognizable behavioral deviation. With Alzheimer’s disease, however, extensive areas of the brain gradually suffer increasing damage. In particular the hippocampus and surroundings, the nerve cells and their connections in the cerebral cortex and parts of the brain stem are severely affected. This leads to serious behavioral disturbance. The patient’s picture of the world loses its structure and becomes increasingly chaotic. The damaged connections in the brain result in his losing his link with the world of reality, with the world shared with other people. With the means still at his disposal he continually attempts to make sense of his chaotic world. The means steadily decrease. The patient’s behavior remains adjusted to his own world, but his world does not correspond to that of the healthy person. Thus he becomes increasingly isolated. Man’s behavior towards his fellow man is partly determined by the way in which the other person behaves to him. This applies even more to the dementia patient. In his way of treating the patient, in his attitude to him, the caregiver can influence the patient’s behavior favorably or unfavorably. The demented person can no longer reason. Thus an appeal to the patient’s reasonableness is doomed to failure. It is on the emotional level

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that the caregiver can approach the patient. This is easier for him if he has insight into how the patient experiences the world and what may be going on in the patient’s mind. For the outside world confrontation with disturbed behavior always signifies loss of decorum. Loss of decorum is, in the broadest sense, loss of human dignity. The dementia patient must above all be helped by the healthy caregiver to maintain his dignity as a human being.

CHAPTER 4 ACTIVITIES AND THE SENSORI-MOTOR SYSTEM 4.1 INTRODUCTION The motor system of the body comprises everything which has to do with carrying out human movement. Human movement is the arbitrary and spontaneous alteration of the position of the body in space with relation to the environment, or the alteration of the position of the limbs with regard to the body as a whole. Before the movement takes place, the limb or the body has a certain posture. When the movement has finished, the body or the limb has assumed a different position. Thus apart from change of place, movement is also change of posture. Movement and posture are intimately connected with each other. The posture cannot change without movement and vice versa. Movement takes place not only in space, but also in time. To move from one posture and position to another requires time; the movement can be quick or slow. Movement also has direction. Movement is influenced by the way a person feels. Thus a person can assume a listless or an energetic, a lethargic or a lively, a relaxed or a tense posture. The movements can be purposeful or hesitant, supple or wooden, animated or mechanical. The total state of mind of a human being, as determined by the cognitive functions and the emotions, therefore has great influence on his posture and movement. Conversely the movement expresses and reflects the inner state of mind. This is clearly to be seen, for instance, in the huddled posture and general poverty of movement of a depressed person or in the jumping up and down and stretching activities of happy and excited people. Each posture and each movement is accompanied by the contraction of certain muscle groups and the simultaneous relaxation of other groups of muscles. If all the muscles were to contract simultaneously, general stiffness would occur. Thus muscular groups must be continuously geared to one another in order to bring about the supple execution of movement. Muscles which continually have to combat gravity and therefore determine the posture to an important extent, such as the back and neck muscles and the extensor muscles of the legs, must constantly receive information on the position of the limbs and the body in space. This enables them constantly to adjust the muscular tension or tonus to the changed direction of gravity in relation to the parts of the body. This attunement and collaboration of the muscles in the change of posture and in movement is regulated by the central nervous system. In order to function efficiently, the motor system needs information about the body and its environment. This information is provided by the sensory system.

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Figure 4.1. The sensory system and the motor system. The major somatic sensory systems and the motor system cooperate to carry out most behavioral acts. Sensory input ascends through the spinal cord to a synaptic relay in the dorsal column nuclei of the brain stem, then to a synaptic relay in the thalamus, and eventually reaches the primary somatic sensory cortex. The direct motor pathway descends from the primary motor cortex through the brain stem to the motor neurons of the spinal cord, and from there to the muscle. (from: Kandel et al., 1991)

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4.2 THE SENSORY SYSTEM The special sensory cells, which register and transmit the information about the position of the body and the limbs in space and the muscular tension, are situated in the muscles, the joint capsules and the tendons. There are also special sensory cells in the joint capsules which register the movement of the limbs. All these cells constantly pass information to the central nervous system and ultimately to the muscles which have to carry out these movements. Normally we are unaware of these impulses; the adjustment of the muscles or groups of muscles to the changes of the position of the body in space and of the movement takes place involuntarily, subconsciously. The necessary sensory information for this adjustment is transmitted directly to the muscles. The link-up of this information with the muscles, which have to execute the movements, takes place in the spinal cord, in the brain stem and in the great brain or cerebrum and little brain or cerebellum. In particular the impulses of the deep-seated muscles in the neck, which determine the position and movement of the head in space, have an important influence on the regulation of muscular tension and on movement. The tactile impulses of the skin, which transmit information from the environment, influence and steer the movements of the hands and feet in the tactile process. The vestibular system, which is situated in the inner ear, provides information on the position, movement and change of movement of the head. With the aid of this information the body can spontaneously assume an asymmetrical posture, such as standing on one leg. Acoustic impulses can also alter the muscular tension, such as stiffening accompanying sudden flinching on hearing a loud bang. Visual impulses conduct the spontaneous eye movements in scanning the environment, in cooperation with vestibular impulses. Visual information also plays an important part in steering the fine movements of the hands and fingers. The sensory impulses of the skin, muscles, joints and joint capsules are transmitted via the sensory nerves to sensory nerve cells which are situated in ganglia or cell groups outside the spinal cord. These cells in their turn Schematic representation of the major tracts which convey sensory information from the periphery to the brain. The Medial lemniscus (C) conveys position and vibration sense, the spinothalamic tract (D) conveys pain and teperature sensation. (From: Kandel et al. 1985) direct their nerve fibers into the spinal cord. Via the nerve fiber tracts in the spinal cord they ascend to the brain stem, thereafter reaching the thalamus, a relay station in the forebrain. The impulses finally arrive in the cerebral cortex of the parietal lobes, where they become conscious. The sensory system comprises the whole complex of senses, the neural pathways which conduct the information gathered by these senses to the brain, and the cerebral cortex of the parietal lobes of the great brain. The sensory system, which gathers and transmits the sensory information from inside and outside the body to the brain, and the motor system, or posture and movement mechanism, which executes the movements, are linked with one another at various levels of the nervous system. In healthy people all these diverse levels of sensorimotor coupling are linked up, or integrated in the central nervous system (spinal cord and brain). Thus all involuntary movements, which are brought about by the various sensory impulses, are

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Figure 4.2. The major pathways through the brainstem. Schematic representation of the pyramidal system, the cortico spinal tract (A) conveys motor impulses from the motor cortex of the cerebral hemispheres via the brain stem to the motor neurons of the spinal cord which innervate the muscles of the extremities. The corticobulbar tract (B) sends motor impulses from the motor cortex of the brain to the cranial nerves, which innervate the muscles which move the eye ball (III, IV and VI), the jaw (V) the face (VII), the larynx and pharynx (X and XI) and the tongue (XII).

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attuned to one another and become part of a total pattern of movement. If this integration is disturbed, then they may appear as unconnected and stereotype movement patterns. All sensory information is ultimately conveyed via the thalamus to the cerebral cortex (with the exception of impulses from the sense of smell, which go directly to the cortex). In the cortex of the great brain all these various impulses, all these diverse forms of information, are finally linked or associated with one another. We are thus enabled to experience both the world and also our own body as an entity. The visible world, the tangible world, the audible world, the world of experience of ones own movement and of the position of the body in space are all merged in the so-called associative cortex of the brain into a meaningful whole. Here it is preeminently applicable that the whole is more than the sum of the parts. In this way a new composite form of information comes into being, a total picture of all the circumstances of our interior and exterior environment. This total information is necessary in order to make complicated motor activities possible, as for example the activities of daily life. With Alzheimer’s disease, the integrity of the associative cortex is severely damaged. The connection between the various aspects of perception and between all this information and the motor system is broken. The world is then often experienced as chaotic and incomprehensible or as inoperable.

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4.3 THE MOTOR SYSTEM While the sensory system provides the information, the impulses to act upon, the movement itself is executed by the motor system. This consists of the muscles of the trunk and extremities, face, tongue, throat and eyes, which are connected by nerves with respectively the motor ventral horn nerve cells in the spinal cord, the motor cranial nerve nuclei in the spinal bulb, and the motor eye muscle nerve nuclei in the brain stem; and also with the little brain; the group of nerve cell nuclei (ganglia) deep in the great brain, which are known as basal ganglia, and the nerve cells of the motor cortex of the frontal lobes. All these systems are in turn also connected with one another by neural pathways. The nerve cells of the motor cortex provide the movement impulse in the first instance and then transmit it, whether or not via a relay nerve cell, to the large nerve cells situated in two columns at the front on both sides of the spinal cord. These nerve cells are called the motor ventral horn nerve cells. The processes or “axons” of these cells form the beginning of the motor nerves. They form into groups and leave the spinal cord via the so-called anterior roots, from where they continue as motor nerves to the muscles. The motor ventral horn cells in their turn transmit the impulse to the muscles of the extremities. Thus all the movement impulses from the brain for the muscles of the trunk and the extremities finally end up in the motor ventral horn cells of the spinal cord, which give the final command to the muscle. 4.4 THE PYRAMIDAL SYSTEM AND THE EXTRAPYRAMIDAL SYSTEM There are two important systems of nerve cells and nerve fibers in the brain, which look after movement, each with its own communications pathways to the nerve cells in the spinal cord: the pyramidal system and the extrapyramidal system. The pyramidal system The pyramidal system begins in the so-called motor cortex of the frontal lobe, which lies next to the dividing line between frontal lobe and parietal lobe. The processes or “axons” of these motor cortex cells form two long pathways or fiber tracts, which run via the white matter of the brain to the spinal bulb, where they cross over each other before entering the spinal cord. This crossing of pathways has the shape of a triangle (pyramid) at the base of the spinal bulb. Thus after the crossing the fibers from the right half of the great brain lie on the left side in the spinal cord, while the fibers from the left brain half lie to the right. As mentioned earlier the ultimate destination of these nerve fiber pathways is the motor ventral horn nerve cells in the spinal cord. A small part of the fibers from the motor cortex do not cross over in the spinal bulb and go to the motor ventral horn nerve cells on the same side of the spinal cord. These pathways of crossed and uncrossed nerve fibers of the motor cortex which descend into the spinal cord, are together called the pyramidal pathways. Part of the motor cortex nerve cells in the frontal lobe directs processes to the motor nerve cell nuclei in the brain stem, which move the facial muscles. These processes also

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cross over. The nerve processes of the pyramidal pathways are the longest nerve processes in the body. The pyramidal system is responsible for voluntary movement, especially for the delicate movements of hands and fingers and of the muscles of the mouth and tongue, which are involved in articulation. Damage to the pyramidal system, for instance as a result of cerebral hemorrhage, cerebral thrombosis or trauma of the brain or spinal cord, leads to partial paralysis, accompanied by muscle spasm in the paralyzed part of the body. The extrapyramidal system The anatomy of the extrapyramidal system is much less clear than that of the pyramidal system. It consists of a complex whole of different groups of nerve cells which are intimately interconnected. The basal ganglia complex, a large cluster of nerve cell nuclei at the base of the brain, is more or less the center of the system. The processes of the nerve cells of this complex are connected with the thalamus, the great relay station of sensory information, from where other very extensive connections go to the cortex of the frontal lobes. The cortex areas of the frontal lobes, which are connected with the basal ganglia, lie on the anterior of the actual motor cortex. These areas are called the supplementary motor cortex and the premotor cortex. They play an important part in the planning, starting up and execution in the right order of locomotor activities. From other areas of the frontal lobes there are nerve processes coming into the basal ganglia. Thus there is a circuit of nerve connections between the frontal lobes and the basal ganglia. The basal ganglia also contain a group of pigmented nerve cells, the black substance or ‘substantia nigra’, which lies in the brain stem. The reticular formation is another group of nerve cells connected with the basal ganglia. It extends from the interbrain into the spinal bulb. These nerve cells are connected with each other by an extensive network (reticulum) of processes The reticular formation lies in the center of the interbrain and the brain stem. The reticular formation is connected with virtually all parts of the brain and of the spinal cord. It exerts an activating influence on the great brain and plays an important role in regulating the muscle tension. Damage to the reticular formation leads to unconsciousness. From the reticular formation the nerve processes of the extrapyramidal system go into the spinal cord, where they are ultimately connected with the motor ventral horn cells. The extrapyramidal system plays an important part in starting up and slowing down movements, enables movements to be carried out quickly and smoothly and is of importance in integrating the postural reflexes into the totality of movement. The extrapyramidal system probably also plays a part in the ‘motor memory’: the automatic execution of acquired complicated motor activities. When we learn a new motor skill, it is probably via the extrapyramidal system that the correct order of all the movements needed to carry out the motor activity is established. This process finally enables us to carry out the once acquired activities without continually having to think about it—they take place automatically, as it were. Thus the extrapyramidal system is partly responsible, together with the pyramidal system, for the execution of the locomotor plan: the plan of execution in the right sequence of all movements which form part of an activity. When the extrapyramidal

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system has once ‘automated’ an activity, we are able to carry out different actions simultaneously, such as walking and shaking somebody’s hand. The extrapyramidal system also has an important task in the regulation and adjustment of the muscle tension to the movement and in the regulation and adjustment of the posture. The basal ganglia are also closely connected with other parts of the cerebral cortex, the so-called limbic brain, which is closely involved in the emotions and in motivation. They are also connected with the thalamus, the great relay station of sensory information. It is therefore not surprising that in Alzheimer’s disease, in which pathological changes can occur in these parts of the brain, or in any of their connections, the motor system becomes disturbed. 4.5 DISTURBANCES IN THE PYRAMIDAL AND EXTRAPYRAMIDAL SYSTEM If the pyramidal system in the great brain is damaged to such an extent that the pyramidal pathway is interrupted, then the so-called pyramidal phenomena occur. Because of the crossing of the pyramidal pathways, paralytic symptoms appear on the side of the body opposite the side where the brain damage has been localized. To what extent the paralysis extends over the affected half of the body depends on how great a part of the pyramidal pathway has been affected. Often both the arm and the leg are paralyzed. In those parts of the body there is then heightened muscular tension, principally in the arm benders and leg stretchers. The tendon reflexes in the affected part of the body become unrestrained. If, for example, the tendon of the extensor muscles of the shin is tapped by a plexor just below the kneecap, then they will contract much more intensely than in someone without paralysis and the leg will vehemently jerk forward. The patient has lost the fine control over the affected extremity. These pyramidal phenomena are often the result of a cerebral hemorrhage or cerebral thrombosis. With damage to the extrapyramidal system so-called extrapyramidal phenomena occur. In contrast to the pyramidal phenomena, the extrapyramidal phenomena more often occur on both sides of the body. They are characterized by a general deterioration and slowing down of movement or by too many abnormal movements, or by both at once. This is accompanied by a characteristic heightening of muscular tension or rigidity. The symptoms of moving too little and too slowly (the ‘hypokinetic’ respectively ‘bradykinetic’ symptoms) consist of slowness and difficulty in getting into action, in difficulty to alternate movements, a slow, shuffling gait, vacant movements of the facial muscles (the ‘mask face’), stooped posture and the inability to perform two movements simultaneously. The patient has, for example, great difficulty in getting up out of a chair or in turning over in bed. Frequently occurring symptoms of too much abnormal movement or ‘hyperkinesia’ are tremor: a slow repetitive movement of the fingers and hand, as though the patient is counting money; walking increasingly rapidly and having difficulty in stopping a movement once set in motion, such as walking. However, in particular in older people these symptoms do not always occur (in contrast to hypokinesis and bradykinesia). A more familiar disorder of the extrapyramidal system is Parkinson’s disease. In this illness certain nerve cells die off which are situated in a part of the brain stem which is

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counted as belonging to the basal ganglia: the black substance or ‘substantia nigra’. These cells, which contain dark pigment (neuromelanin) produce the neurotransmitter dopamine. This substance has an inhibiting influence on the basal ganglia. By treating Parkinson patients with a certain drug, levodopa, which is converted into dopamine in the body, they are often able to function again almost normally. As a result of the success obtained by treating Parkinson patients with levodopa, a few years ago there were high hopes of a similar type of pharmacological treatment for Alzheimer’s disease. This disease also affects a certain group of brain cells: the basal nucleus of Meynert, which is situated in the forebrain and has the task of producing the neurotransmitter acetylcholine. This neurotransmitter is greatly diminished in the brain of Alzheimer patients. Unfortunately attempts to compensate this deficiency have turned out to be a disappointment; many other neurotransmitters also appear to be diminished in Alzheimer’s disease. The situation here is more complicated than in Parkinson’s disease. Older people sometimes exhibit extrapyramidal symptoms which are to some extent reminiscent of Parkinson’s disease, such as retarded movements, stooped posture and being unable to carry out two movements simultaneously. Usually these symptoms do not progress, as happens in Parkinson’s disease. Patients suffering from Alzheimer’s disease exhibit extrapyramidal symptoms in the late stage of the illness, which do indeed become aggravated and ultimately lead to the general immobility of the patient. Apart from the pyramidal and the extrapyramidal systems there is a third system which plays a part in the motor system: the little brain or cerebellum. The little brain has extensive connections with the spinal cord, the midbrain, the vestibular organ in the internal ear and the motor cortex of the great brain. The little brain coordinates the muscles which are of particular importance for the posture of the body, especially the muscles which have to overcome gravity. The little brain also has an important share in the fluent execution of movements, the right dose of power which is needed for each movement, and the precision of the movement. Although these three components of the motor system—the pyramidal, the extrapyramidal and the cerebellar system—are viewed as separate subsystems of the motor system, they are in fact closely connected with one another. The whole complex of human movements, the motor system itself, undergoes continual change in the course of a lifetime. The further the brain develops in the toddler and the child, the more varied and complicated is the feedback information from inside and outside the body which needs to be processed. The motor system also becomes proportion-ately more complicated. The linkage between the information system, or sensory system and the motor system becomes increasingly intricate. In addition, the motor system is ever more intimately connected with the limbic brain which governs affect and motivation. This makes it possible for the movements to become ever more varied, individual, refined and flowing. The sensorimotor integration, the harmonious collaboration between senses and muscles, is regulated on an ever higher level in the nervous system. With the attainment of adulthood the growth of the nervous system has for the most part been completed. The previously developed organizational levels of the sensorimotor linkage with their simpler patterns of movement remain intact in adults, but come under the supervision of the higher, subsequently developed levels. Thus in the adult these “primitive” earliest movements can no longer be recognized as such—just as the face of the baby can no

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longer be recognized in the face of the adult. It is only when subsequently developed levels of integration can no longer function properly, as occurs with neurologic conditions such as Alzheimer’s disease, that previously developed patterns of movement replace them. But they are not adequate for an adult body. Superficially they do indeed appear to resemble certain movement patterns as seen in a baby, but in fact they are no more than the remaining reactions of an extremely impoverished stereotype pattern of movement, generated by a dilapidated, internally disconnected motor system. 4.6 THE SENSORIMOTOR SYSTEM AND THE ORDER OF THE MOVEMENTS In a highly simplified representation of the human motor system we can see it as being built up according to a set order of ever more complicated connections, enabling ever more complicated movements. During the physical and parallel mental development from newborn baby to adulthood the build-up of the motor system takes place gradually and according to a predictable scheme in successive stages of development. The build-up of the motor system runs parallel to the development of the brain. Equally in each subsequent stage of development the information, which can be assimilated from the persons own body and from the environment of the body, becomes more differentiated and complicated. In each stage a corresponding development takes place in the motor system. In each subsequent stage of development the incoming information has to be integrated anew with the developing motor functions on an ever higher and more complex level. Thus each new stage of development means the integration of more information and new motor capacity on a higher and more complicated level of the nervous system. This close integration of sensory input and motor output, or sensorimotor integration, creates a new system: the sensorimotor system. It is the sensory system and the motor system closely linked together and working as a unity. The “lowest”, least complex level of sensorimotor activity is the level of the reflexes, which take place via the spinal cord, the spinal bulb and the brain stem. These reflex movements are innate; they are not acquired. The reflex movements are the first stage in the development of the sensorimotor system. They are already partially present in the fetus. Information impulses from the skin, muscles, tendons and joint capsules are transmitted to the spinal cord via the nerve. If the impulse is strong enough, then it is transmitted in the spinal cord to the motor cell at the anterior of the spinal cord. This cell then sends an impulse via the nerve cell process or axon in the motor nerve root to a particular group of muscles and briefly sets them in abrupt motion. This is a reflex. Such a reflex action is extremely stereotype: it results in either rapid and abrupt bending or abrupt stretching of a limb. Reflex movements enable the organizm to evade harmful impulses quickly and effectively. Movements which take place exclusively at the level of the spinal cord scarcely occur in healthy people. That is because these reflex movements generated through the spinal cord are modified by impulses from the higher up parts of the brain. As a child grows up, the continually developing great and little brain occupy an ever more important place in curbing the reflex actions. In a patient with a transverse spinal cord lesion the spinal cord

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reflexes emerge unchanged, because they can no longer be influenced by the higher up parts of the brain from which they are then cut off. In healthy people, reflex movements which travel unimpeded via the spinal cord or the brain stem, can occasionally still be seen if the impulse is strong enough, such as a strong pain impulse. If we touch a hot stove by accident, the hand is rapidly withdrawn, reflexively, unconsciously and unconditionally. Tapping the tendon of the quadriceps muscle which extends the lower leg with a plexor also evokes a reflex movement: sudden and involuntary stretching of the lower leg. That is sometimes even more successful if the patient’s attention is briefly diverted. This actually shows that the great brain does indeed exert influence on the reflex movements. On a higher level of the sensorimotor integration there are the more complex, instinctive movements, which are also innate and do not need to be acquired. These too are stereotype movements, which take place entirely involuntarily. The integration of these movements occurs in the brain stem, the interbrain and possibly in the basal ganglia and some early developed parts of the great brain. These movements are functional, principally for feeding. An example is the way a baby automatically opens its mouth if it sees something approaching in its field of vision. For the execution of these movement patterns a more complicated sensorimotor mechanism is already needed than for the simple reflex movement of the spinal cord. In adults we no longer see these stereotype automatic movements. They are no longer needed. An adult opens his mouth voluntarily. But with extensive damage in the great brain, when voluntary movements become increasingly difficult, as with Alzheimer’s disease, they re-emerge. On a still higher level are the automated movements. These are innate patterns of movement, which the child has to master through practice. After a certain practice period the child learns to control the movement and perform it automatically. For these movements close cooperation is needed between the basal ganglia, the cerebellum and the motor cortex. Walking is an example. A following stage in the development of movement is that of the purposeful or aimed movements. An example is reaching for and picking up an object with the aim of feeling it. A certain degree of linkage between different parts of the cortex of the great brain is required for the execution of these movements, which already call for a simple form of cognitive ability. As the development of the great brain progresses, increasingly complex links are made between the different parts. This enables the execution of ever more complicated movements, which are directed by ever more complicated information. The child is now able to learn and automatically execute a motor program; a sequence of simple motor acts resulting in a complex activity. The complexity of these automatically executed programs increases continuously, from dressing oneself to driving a car. The highest level of sensorimotor integration and the last stage in the development of the movements is formed by consciously willed and planned movement. This form of movement calls for a conscious plan of action; these movements are not only purposeful, but also deliberate. In order to plan an action, you have to be able to form an idea of it. This means that you have to be able to remember the action, ‘to call it to mind’. It must be possible for all the information from the environment, which is necessary for the action to be carried out, to be selected and utilized. One has to be able to continuously

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consider and reconsider ones options. The goal of the action is never out of sight. If there is an unexpected change in the external circumstances, improvization is needed in order to be able to alter certain details of the plan of action. If the goal of the action cannot be kept in mind, then the action cannot be carried out. Components of the action can, however, be executed as a routine, without direct cognitive control. This form of action is only possible through the intermediary of the so-called association cortex of the great brain, where all the sensory and motor modalities are integrated, in perfect unison with all other parts of the brain. 4.7 THE DEVELOPMENT OF THE SENSORIMOTOR INTEGRATION AS THE BASIS FOR BEHAVIOR As seen before, the development of movement is closely connected with the development of the sensory system, the entity of integrated and coordinated sensory functions. Impressions from all the sensory fields—seeing, hearing, feeling, smelling and the feeling of movement—come into different parts of the brain: in the so-called primary sensory areas of the cerebral cortex. During the normal development all these primary sensory information areas of the great brain become increasingly closely connected or associated with one another via ever more extensive nerve cell communications. The hippocampus, a part of the temporal lobes, is responsible for the selection for permanent storage of all relevant information in the brain, so that it can be recalled at any time. A well developed sensory system together with the memory function is the basis of the cognitive functions. The better these sensory mechanisms are developed, the better a person can mentally adapt himself to the ever changing circumstances of his environment. The motor system, which executes all movements, develops along parallel lines to the sensory system. The motor functions can roughly be divided into the coarse movements and the fine finger movements. The coarse movements comprise the posture and balance reflexes, sitting, standing and walking. The fine finger movements comprise the use of hands and fingers, gripping and manipulating. During the development of the brain increasingly extensive connections come about between the sensory and the motor system, which enable increasingly complicated and more varied movements to be made. These connections are the anatomic basis for what is known as the sensorimotor integration: the close attunement of information and movement. Thus the hand can only work properly if it is continually directed by touch and sight. Speech is also a form of motor activity. Sensory impulses necessary for the development of speech come from hearing. For the execution of speech, the motor system of speech, i.e. the muscles of the throat, mouth and face are needed. In order to produce all the varied sounds of speech the cerebellum must be properly developed. This part of the brain is responsible for the fine attunement of the articulatory muscles. It also looks after the fine attunement of hand and finger movements, which are needed for precision movements. The development of speech and of language is closely connected with the development of the nervous control of facial muscles and of the hand. This connection can still be seen in the use of the hands to gesticulate while speaking. Language and the hands are the most important means of communication with others.

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They form the basis of the social functions which connect us with our fellow men and with society. These are not possible without well developed and well integrated sensory and motor functions. Our behavior, our social interaction with our fellow men, is to a great extent censored and determined by the culture in which we live. Thus there is a very close connection between the development of our sensorimotor mechanism and the ability to hold our own in the society in which we live. The development of thought, of the intellectual functions, is in turn closely connected with the development of language. Even the acquired functions of daily self-care form a necessary base, from which the individual can fit into society. Only when during the course of normal development these functions can be and are carried out independently, can the social-cognitive functions be further extended. Attuning ones own drives, feelings and needs to those of ones fellow men will ultimately make it possible for the individual to make a constructive contribution to the community. The connections in the brain form the basis for the individual’s communication with the world. 4.8 THE NORMAL DEVELOPMENT OF MOVEMENT In this paragraph the sensorimotor development and psychomotor development will be discussed in detail. Psychomotor development is the development of the motor effects of mental processes. Knowledge of the order in which functions develop is necessary for better understanding of the deterioration of functions in the Alzheimer patient. All life is movement. A few weeks after the conception the primitive heart of the embryo already begins to beat. During the third to fourth month of pregnancy the spinal cord and spinal bulb of the fetus are already developed to such an extent that a few simple reflex movements can occur. There is already an extremely primitive form of sensorimotor integration. A little later, when the brain stem develops, defense reflexes are possible in the form of bending of the still primitive extremities in reaction to painful impulses. Swallowing and sucking reflexes also already occur. During the later stage of the pregnancy, when the basal ganglia and cerebellum are developing, spontaneous movements occasionally take place. The innate reflexes Thus the newborn baby is already in possession of a variety of reflex movements: simple movements which begin and end automatically providing there is an appropriate stimulus. For instance, voiding and passing stools are mediated respectively by the vegical and rectal reflex; distension of the bladder or rectum provides the stimulus for automatic contraction of the muscles of these organs. Defense reflexes are automatic stereotype movements such as the withdrawal of an arm or leg in reaction to a pain stimulus. Sudden contact results in the fright reflex, with abrupt spreading of arms and legs. The reflexes which are for the benefit of feeding are somewhat more complicated: when the baby’s lips come into contact with the breast, the sucking reflex occurs. When the nipple touches the region of the mouth, the baby automatically turns his head in the right direction until he can get the nipple between his lips. When the milk enters his mouth, the swallowing reflex automatically occurs. The grasp reflexes are also already

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present from the beginning. If the mother puts her finger in the baby’s hand, he automatically grasps it and does not let go. If there is pressure on the soles of his feet, his toes make a grasping movement. Some of the postural and righting reflexes are also present, as for example the sudden stretching of the outspread arms followed by a slower bending back of the arms and legs in the hips. This reflex occurs if the head bends backwards when the baby is picked up in the back posture. If the child is picked up and his feet touch the table, the legs already make walking movements, even though it will be a year before the sensorimotor mechanism of the nervous system is sufficiently developed and the postural and righting reflexes sufficiently integrated for independent walking and standing to be possible. Apart from reflex movements the newborn baby can also make simple spontaneous movements, such as kicking the legs and waving the arms. These movements often occur in a situation of heightened emotion, such as a fit of crying. The motor behavior of the newborn baby is still fragmentary: it consists partly of reflex movements, which do not seem to exhibit any very clear connection with one another. These reflex movements partly come about without the intermediary of the great brain, which is not yet sufficiently developed. Soon after birth, stimuli from the outside world help determine the development of the great brain. The fragmentary motor behavior reflects a fragmentary, diffuse experience of the world; the various sensory impressions have not yet been connected up into an entity. In the beginning the stimuli come mainly from the body itself, principally pain, hunger or pleasure stimuli. The newborn baby spends most of his time asleep. In the very first period after birth when his sensory system is still inadequately developed, the variety of external stimuli which can activate him, is limited. As a result of pathological processes, which affect extensive areas of the great brain, the demented adult can ultimately revert to a level of experience and locomotor behavior which exhibit similarities with the early childlike behavior of the newborn baby. Some of these ‘primitive’ reflex movements, particularly grasping and sucking, then again become part of the behavioral pattern. Contact with the outside world After about six weeks the various movements made by the baby are more coordinated. That is closely connected with a better developed sensory mechanism. The baby can now make eye contact, he can now smile at his mother. After about the eighth week the baby can hold his head up, albeit somewhat unsteadily. The sense of sight is now also developed to the extent that he can vaguely perceive moving objects in his direct line of vision, though he cannot yet distinguish them. During the following six weeks he starts to react to sounds and can also smile if spoken to in a friendly way. He can now turn his head. The movements become less automatic and more oriented to the environment. His eyes can follow large and colorful objects, which he sees moving close to his face. He can move his arms and hands more and more independently of one another. The passive grasping reflex slowly changes into active grasping for things he can see. The fragmented reflex behavior is now replaced by behavior in which different movements are coordinated. The baby can now distinguish his own hands and fingers and is fascinated by their movement. But he does not yet recognize those hands as his own hands. All these

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movements form the basis of simple component movements. Simple activities now become possible. After some three months he can lift his head up when he is lying on his stomach. At about the fourth month the child can grasp and firmly hold a rattle, which is dangling in front of him. He can actively look around him. He recognizes his mother’s voice. He begins to make smacking sounds. Round about the sixth month he begins to spend part of the day in a vertical position, which gives him more opportunities to look around and pick things up. Given help he can sit up and given support he can remain sitting. He can turn over from lying on his stomach to lying on his back. He now uses his hands to take hold of things, feel them and examine them. He can stretch his hands out towards them. He can put them from one hand into the other, because the visual sensory mechanism and the locomotor mechanism are now linked up with one another. He now also starts to examine things with his mouth. He discovers his own hands and feet as an instrument with which he can bring something within reach. He becomes more and more actively engaged in the surrounding world. The development of the sensory cortex of the brain now receives ever increasing stimulation from an ever greater variety of stimuli from the environment. Babies who grow up in an environment that is rich in stimuli develop much quicker than babies in an environment with few stimuli. In particular the stimuli which promote the contact with the mother, are of great importance. The child imitates the sounds of her voice, whereby the auditory stimuli are linked with the still primitive speech mechanism. The baby is now very susceptible to the display of affection by the mother. He also likes to see his own face in the mirror. There is a beginning of social behavior. When the baby is seven months old, he can chew solid food. He reacts to the sound of his name and begins to say syllables. He can now sit up without support for some time, which enables him to see the world from a different angle. He produces sounds by banging objects against the table or wall. He becomes interested in very small objects, such as crumbs, little bits of paper or insects. He can sit intensely gazing at them and try to pick them up and put them in his mouth. He now likes to play with familiar people, but he can be frightened of almost everyone who is not part of his daily environment. He is more interested in people, especially if they play with him, than in things. As we shall see later, this is also the case with demented patients. At about the eighth month he follows objects with his eyes, if he has let them fall. He now also begins to be interested in the connection between cause and result, the very beginning of the development of the intellect. At ten months the baby can crawl, move from crawling to sitting and pull himself up on something with his hands. He can now also climb onto a low chair and can sit at table for a longer period. Standing and walking Gradually the baby’s muscles, which up to then were fairly stiff, become slacker. The stiffness is particularly noticeable when his arms and legs are moved by someone else. This stiffening serves him well because it stabilizes and protects him whenever he is being pushed.It is governed by the extrapyramidal system. That the muscles gradually become more supple is partly a result of the development of the cerebral motor cortex of the frontal lobe, and of the development of the pyramidal system. This is accompanied by

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the development of standing and walking activities, which the child has under control when he is one year old. This can only happen when the extrapyramidal system and the now rapidly developing pyramidal system begin to work in unison. At this age the child looks for longer periods at other people and things round about him and observes everything attentively. He understands an average of about twelve words and can say six words himself. He can drink from a cup by himself, albeit rather messily. At about sixteen months the child can walk with good body control. He can now throw a ball and scratch paper with a pencil. He can now say about twelve words. He can feed himself with a spoon. At about the eighteenth to the twentieth month he discovers his anus and by the time he is two he has his bladder and bowel motions under control after a fairly intensive toilet training. He now speaks at least fifty words. He demands continual attention from the person who is looking after him. Becoming increasingly independent Many of the previously invariably occuring reflexes disappear because they are placed under voluntary control. When the child is two years old, he can sometimes indicate when he needs to use the potty and he has usually gained voluntary control over the sphincters of the bladder and rectum. He can feed himself without making a mess. With a little practice he can open a zipper. He can help tidy up his toys when his mother asks him. He can carry a cup or plate without letting it fall. He can now refer to himself as ‘I’. At two and a half most children can pour water from one glass into another. The toddler can pull up his trousers and get into the sleeves of a sweater, dress or blouse. He can also learn to put on his shoes. He recognizes his own face in the mirror. He has on average a vocabulary of at least fifty words, can form sentences of about eight words and knows the difference between he and she. He can name about seven parts of the body and can do simple games: piling up blocks, doing simple drawings. At three a child is usually completely toilet-trained and goes to the toilet alone. He can wash and dry his hands, distinguish the front of a blouse or coat from the back, help dress himself and put on his shoes himself. He can carry out simple tasks. He can stand on one foot. Between the third and fourth year the child’s motor behavior becomes more restless: he cannot sit still and is inclined to run away all the time. The sense of self-respect increases and he is easily insulted. He says “no” when “yes” is expected. He is inclined to cry scream or hit out if he feels frustrated. Self-awareness is just starting to develop, but the child is still very uncertain of itself and its environment and needs continual encouragment. As regards activities he wants above all to dress, undress and wash himself, even though he cannot yet do it properly alone. The concept of the body has now developed to the extent that the child knows where the different parts of his body are. The motions of walking, sitting, standing up and grasping, which were initially clumsy and cumbersome, now become more flowing and merge more into one another, so that the body moves less and less ‘en bloc’.

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Fine finger movements. Development of the body scheme At the age of four the fine finger movements begin to develop. Skill in drawing and coloring, working with clay, folding paper and threading beads increases, so that the activities are performed with more precision. The scheme of the body has taken shape: the child knows about his own body and parts of the body and their relation to one another and to the space in which he moves. He can point to his body parts when asked to. Now that there is a body scheme the organization of the child’s own body space can get underway. From now on he is able to organize the space around him. At the age of five, for example, the child can turn out a doll’s house and arrange it again. He can make quite complicated constructions with building blocks, pull them down and then build them up again. The motor memory or the ability effortlessly to remember a particular order of actions continues to develop. This enables the child to control a particular order of component actions, which together form one activity. A five-year-old can dress himself without help. He knows the right order in which the clothes must be put on. A following step is to learn movements, which call for a high degree of coordination and integration of sensory information and motor skills, such as cycling or roller-skating. Only when the scheme of the body has been developed, can the body be used as an instrument. Only when the hand can be used as an instrument, can tools be skilfully handled, with which the ‘working space’ of the child’s own body can be extended. The existence of the body scheme is necessary for the beginning of self-awareness. Only when self-awareness has been sufficiently developed, has the foundation been laid for the child to hold his own in a group. Only then can he further develop within the group the social skills which become increasingly necessary. At school When the child has reached the age of six he must be able to fulfil a number of important conditions at school. He must be able to sit still, listen, accept tasks, manage without the direct supervision of his mother for several hours, hold his own in a community of his contemporaries, control his feelings to a certain extent. The new environment of the school also requires a new adaptation of the motor function. In order to be able to function well in this community, he also needs to be pliable. He must be able to adjust his postures and movements to those of others. This will enable him to engage in corporate activities. He must be able to relax his muscles. Unconditional reflexive stiffening of his muscles on every contact would not serve him. Furthermore he must have an adequate vocabulary at his disposal, be able to concentrate on a task without necessarily being distracted by every stimulus from outside, be able to remember simple facts, have good powers of observation, be able to make connections by linking the observations to one another and have an idea of time and space. All this is needed in order to be able to develop the cognitive functions further in a more formal manner at school. Apart from a high degree of sensorimotor integration, this also calls for a more stable emotional life. These two qualities are closely connected with

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one another. In the period from the sixth to the twelfth year the brain develops in a fairly regular manner without sudden great changes, thereby enabling the cognitive powers to develop in a state of comparatively great emotional stability. During this period memory, thought, judgment and insight continue gradually to develop. However, throughout the whole of the rest of a persons life, these functions remain highly susceptible to disturbing organic and psychic influences. In Alzheimer’s disease it is precisely these cognitive functions which are affected first and most severely. This can be accompanied by emotional disturbances. Thereafter all the other functions will be lost in the reverse order to that in which they were acquired. 4.9 ACTIVITY AND THE AGING MOTOR SYSTEM—INVOLUTION From the discussion of the development of the motor system in the baby and the child it appears that human activity is closely connected with the growth and development of the motor (locomotor) functions. The development of the motor functions is in turn closely connected with the development of the sensory capabilities. The smooth execution of the movement calls for a perfect integration of both systems, the motor system and the sensory system. A slower pace Healthy older people move in a different way from young people. At about the age of forty the motor system already clearly shows the results of aging, especially when extra exertion is required. Top sports performances can no longer be achieved. The motor mechanism of the legs is particularly affected by increasing age. Between the ages of fifty and sixty the pace of running slows down. The aging balance mechanism can no longer always adequately compensate for sudden changes of position or movement of the body, which sometimes leads to stumbling. Running on rough ground, such as in the woods, becomes more difficult. After the age of seventy locomotor activity decreases in general. Older people often spend longer portions of the day in a sedentary position. The trunk is less mobile in the action of walking. As regards physical movement many older people play a less active part in the world. That enables them to observe more of what is going on around them. Most of the movements made in this context are those of the head and eyes. The changes of expression are often less rapid than in younger people. The urge to move itself is greatly reduced. It also becomes increasingly difficult to set movements in motion. Older people can carry out fewer simultaneous movements, such as talking, putting on a coat, lighting a cigarette and walking at the same time, while for younger people this presents no problems. Older people stand still for a moment if they have to take their purse out of their trouser pocket or their handbag. If they get involved in a lively conversation while walking, they have to stand still from time to time to be able to make gestures with their hands. Acquired movements, which have been executed automatically and without thinking all their life, now require more conscious attention and concentration and have to be

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directed more by the sense of sight. Lighting a cigar becomes a slow, deliberate action and requires complete awareness. The movements thereby acquire something of a dignified quality. Older people can in fact no longer permit themselves to hurry. Body and mind can no longer support the extra effort. For the Alzheimer patient this applies even to a much greater extent. But he also loses the cognitive abilities which would enable him to compensate for this loss in motor function. At an advanced age the intellect compensates for the decrease in precision and flexibility and the loss of automatic movement of the body. Even with routine actions older people have to give it more thought. This makes them more conscious observers of their own movements. The older person knows more about his movements. For the younger person this makes him seem somewhat aloof and reserved. For the Alzheimer patient, the decrease in his cognitive powers is almost catastrophic for his movements. The changes in the motor system as people grow older resemble the locomotor changes which occur as a result of disturbances of the extrapyramidal system, as in Parkinson’s disease. However, they are probably the result of several factors. The changes take place slowly and gradually. This gradual regression in the development of physical functions is known as involution. The majority of older people are not too greatly bothered by this and can lead a meaningful and active life, so long as they remain physically and mentally active. However, when illness and infirmity occur, the nervous system is—just as the other organs of the body—often no longer capable of providing compensation. That is when the elderly person becomes an ailing old person. 4.10 ACTIVITY AND THE MOTOR SYSTEM WITH VARIOUS DISEASES OF ADVANCED AGE Some of the locomotor changes in the elderly are the result of disorders, which occur in later life, such as osteoarthritis of the joints and the vertebral column, osteoporosis of the bones, shortness of breath or visual disturbances resulting from eye diseases. These disorders have not been taken into account here. Motor and locomotor changes can also be caused by disorders of the nervous system which usually only occur in older people and are therefore often improperly and mistakenly regarded as ‘normal’ symptoms of old age. The senile tremor is an example: a rhythmic and moderately rapid trembling of the hands and sometimes of the head, which is aggravated by emotion or exertion. Disorders of the balance mechanism lead to giddiness, especially with movements of the head, to unsteadiness in walking and to restricted movement and result in falls. Diseases of the peripheral nerves in the legs lead to numbness of the feet and lower legs, which can also cause an unsteady gait, difficulties in maintaining balance and shuffling the feet. They can also be accompanied by pain in the extremities. A number of diseases, such as diabetes, cancer, hardening of the arteries or an abnormal function of the thyroid gland, are often accompanied by disorders of the peripheral nerves, which can in turn lead to locomotor disturbances. Diseases of the cerebral blood vessels can lead to cerebral hemorrhage, cerebral thrombosis or cerebral embolism, which result in permanent damage to the affected parts

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of the brain. A great variety of neurological symptoms may then occur, such as complete paralysis of one side of the body or an isolated apraxia: the inability to carry out a particular acquired action. These symptoms occur suddenly and lead to the isolated loss of specific functions; however, as a rule the patient does not exhibit a broad loss of brain functions, as is the case with dementia. Sometimes, as time goes by, numerous small necrotic foci can occur in the brain as a result of successive blockages of small blood vessels. The damage caused by all these foci together can indeed lead to broad loss of brain functions and to dementia, the socalled vascular dementia. With this form of dementia locomotor disturbances tend to occur earlier on in the course of the dementia process than in Alzheimer’s disease. Parkinson’s disease leads to one of the most characteristic pictures of disturbed movement. It often begins with slight stiffness, which usually starts in one arm or leg, whereby the fine finger movements become more difficult. Fatigue and sometimes muscular pain are also early symptoms. The muscular rigidity gradually increases and spreads to all the extremities. The slow tremor of fingers and hands, which is characteristic of this illness, then becomes clearly visible. Speech becomes softer, monotonous and mumbling and the patient sometimes stops in the middle of a sentence and cannot continue. The facial expressions disappear. Swallowing is impaired and pooling of saliva in the mouth and drooling occur. Setting movements in motion, such as getting up out of a chair or turning over in bed, becomes increasingly difficult. Once the walking movement has been set in motion, the patient then has great difficulty in suddenly stopping. His posture becomes increasingly stooped, his knees are bent, his arms no longer move as he walks and his gait becomes shuffling. The patient can no longer do two things simultaneously, such as walking and talking. There are also emotional problems. These patients are often depressive. Disturbances of the cognitive functions may occur at a later stage and in some cases the patients become demented. Parkinson’s disease is caused by the gradual loss of the pigmented nerve cells in the black substance (substantia nigra) in the brain stem, which is part of the extrapyramidal system. These cells produce the neurotransmitter dopamine. This substance has a restraining effect on the basal ganglia, which is of great importance in regulating muscular tension (tonus) and in the setting in motion and automatic performance of the movements. The disease is progressive and ultimately leads to complete rigidity and cessation of all movements. The symptoms can be considerably slowed down and diminished by the use of medicines such as levodopa and other, more recently developed medicaments. Finally there is the senile walking disorder, which is a form of changed movement sometimes occurring in people over seventy. It begins gradually with the person taking ever smaller steps. One foot is placed increasingly close in front of the other, until the elderly person ultimately walks with small tripping steps. The foot is scarcely lifted. It just escapes being an actual shuffling gait, whereby the foot does not leave the ground. Turning round is performed with small steps, whereby one leg is used as a pivot. The arms scarcely swing any more and are held close to the body. Back and head are bent forward. The eyes look straight ahead, looking sideways is no longer possible. Muscles can no longer be voluntarily relaxed. It seems as though the patient with this locomotor disturbance is constantly afraid of falling.

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If the elderly person with this form of walking disorder is suddenly taken hold of, his arm or leg and often his whole body go rigid. This is a protective and stabilizing reflex mechanism. Sometimes he also has a clutching reflex. In trying to sit down he walks round the chair and has great difficulty in turning his back to the chair and then sitting down. Finally sitting down also becomes impossible. The increasing fear of falling makes the movements more and more unsteady. In certain cases this disorder is progressive, which ultimately leads to the patient being completely incapable of walking and standing independently. After that the patient is also unable to remain sitting up without support. Eventually he becomes bedridden and lies with his knees drawn up and his arms bent and close to his body. In the progressive form the patient gradually becomes demented in the course of the locomotor disorder. Roughly speaking the deterioration of the motor system here takes place in the reverse order of the normal development. The causes of this locomotor disturbance are not exactly known. As will be seen, the movement of the Alzheimer patient in the late phase of the illness most closely resembles this form of senile locomotor disturbance. With Alzheimer’s disease this disturbance usually does not occur until late in the course of the illness, when the patient is already seriously demented. This implies that the loss of cognitive abilities has some bearing on its occurrence. 4.11 THE DETERIORATION OF THE MOTOR SYSTEM IN THE ALZHEIMER PATIENT AND ITS INFLUENCE ON ACTIVITIES It is not until late in the course of Alzheimer’s disease that the motor abilities become disturbed to the extent that it affects the patient’s ability to walk. Initially the automated movements and the acquired locomotor skills are not greatly disturbed. These activities are comparatively routine and require little mental exertion. The conciously willed movements and activities in particular are the first to become disturbed. For the clinical neurologist who mainly attends to the ability to perform certain movements on request, there is initially little to be observed. In the first clinical description of the illness Aloïs Alzheimer observed that his patient was disoriented in time and place. She was completely astray and could no longer make sense of anything at all. Now and again she wandered aimlessly through the corridors of the hospital, dragging a variety of objects along with her. She no longer knew what to do with utensils and implements. Nevertheless in this stage she still had the use of her hands and had no significant disturbances of locomotion. But her way of moving showed a high degree of helplessness. Whereas her mental faculties steadily deteriorated, only slight neurological symptoms occurred during this period. After four and a half years the patient was completely apathetic, incontinent, bedridden in the fetus posture and suffered from decubitus. How can that be? Normal use of the hands and yet not able to handle utensils and implements? At the most slight neurological symptoms and yet completely immobile within a few years? How did that come about? Alzheimer was a good observer and excellent neurologist. Had he missed something after all? Why did he not describe this loss of motor function? Is not motor function the domain of the neurologist?

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Preliminary phase: imperceptible beginning What we see depends on the mentality with which we observe, on what we expect to see, on what we look for. Aloïs Alzheimer viewed the motor mechanism from the perspective of the neuro anatomist. Looking at neatly and conveniently separated systems of the central nervous system, he could find nothing that was beyond the limits of normal function. The patient moved her hands and fingers, she walked, sometimes even quickly and for a long period. The tendon reactions were normal. The sensibility was intact. There was no paralysis, no muscular atrophy. The locomotor mechanism as such was working and was not defective. The parts were intact. But her movement expressed a high degree of helplessness and sometimes desperation. It was no longer resolute or purposeful. What the patient with Alzheimer’s disease loses is the program of movement: the totality of purposeful and planned motor activities. The motor mechanism becomes steadily deserted by the failing cognitive functions. That means that the motor mechanism is instructed by an increasingly simple program. It does less and less because there is less and less to do. An increasing lack of varied information leads to less variety of movement, to stereotype movement. A steady decrease in the variety and quality of information and sometimes an inability for the information to reach the motor system lead to an increase in stereotype movement and a reduced ability to adapt to the ever changing circumstances. With the slow disappearance of the cognitive functions the locomotor mechanism is directed more by emotions and a general undifferentiated urge to move. The emotions have also become destabilized through the fading of the cognitive functions and are easily influenced by the environment. When the emotions become finally extinguished, only an undifferentiated urge to move makes the patient wander about, sometimes for hours, which is all that is left to do. Until this urge also fades. Then most movement ceases. Thus first the self-governed movement is disturbed and later the movement itself. As long as only the self-governed movement is disturbed, the caregiver can provide the instructions for efficient movement for the patient. The task with which the caregiver is faced, is to offer the intricate information needed for the complicated activities in an ever simpler form. To do this he has to break the activity down into component actions and present the patient with the relevant instructions in the right order. Thus as the disease progresses, the caregiver’s task is continually changing from supervision to stimulation, from stimulation to guidance, from guidance to take-over, first partially, and finally totally. Alzheimer’s disease is also a disease of movement. In the end all movement ceases. The pace of thinking slows down Every human activity takes place in time and in space. Every activity is a question of movement in time and space. Even the activity of thinking happens in notional time and space. A spatial picture is needed in order to be able to think. In order to be able to make plans, we must be able to transfer ourselves to the future in thought. To take an initiative is to take the first step oneself. To remember is to recall to mind something from earlier on, to move it to the present.

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The movement of thinking, the stream of thought, which happens in the spatial picture and which is directed or oriented to a goal in the time ahead of us, is one of the first to become disturbed in the Alzheimer patient. It is the energy of the emotions which sets thinking in motion and propels it forward. Initially, the patient may become increasingly discouraged by his failing to guide his thoughts, which may in turn decrease his emotional energy. In the course of the disease this energy gradually receives less direction from the cognitive mental process. As a result his actions become disoriented and purposeless. If the patient is still working, this soon becomes evident. He can no longer organize and plan, since that means being motivated, taking initiatives, thinking ahead, directing and structurizing the future. He also forgets important appointments. He can no longer cope with new situations, which call for a different approach and are outside the daily routine. That demands initiative and insight, which are no longer at his disposal. He can no longer plan journeys to a town or country where he has never been before, but is able to travel to familiar locations. The thought process becomes sluggish and laborious and loses its originality and creativity. This is also evident in his conversation, which loses its content and becomes superficial. The patient loses his grip on what is going on around him in the world. He loses his curiosity for what he is unable to grasp. However, routine activities at home and outside the home are carried out without too much difficulty and give him something to hold on to. Skills acquired through years of habit remain intact for the time being. The household activities can still be arranged without all too much difficulty. Thus the early stage of dementia in someone who is no longer in employment is probably recognized later by his environment than in someone who is still closely connected with the outside world through his work. Another problem for the patient with the beginning of dementia is how to spend his time in a meaningful manner. This requires initiative, creativity and the ability to structurize ones activities. These are qualities which are steadily on the decrease. If he receives encouragement, he has no difficulty in, and enjoys performing activities, which do not call for too much mental exertion and which he has always liked doing, such as playing billiards, cards, dancing, swimming or cycling. His relations with his fellow men are also influenced by the illness. The patient has less interest in other people. He has increasing difficulty in putting himself in the other persons place and becomes more egocentric. This leads to other people beginning to avoid him. The relation with his fellow men has been broken, resulting in social isolation. In this preliminary phase of the illness the patient’s cognitive powers have, roughly speaking, regressed to the level when he was about sixteen years of age. In this preliminary phase the patient is still able to take care of his immediate needs. He is not demented yet. Phase I: Loss of organizational ability In the following phase (dementia phase I) of the illness that is indeed the case. The patient now has problems with the organization and structure of the space for his personal needs, in so far as this extends beyond his direct dwelling space. All the more complicated activities and self-care activities, which require interaction with people or institutions outside the home, gradually become impossible. This varies from arranging

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everything to do with money, to the total provision of the daily meals, regular visits to the hairdresser, the dentist or the doctor. The patient starts to neglect himself. The increasing inability to organize time and space now also extends to the personal living space. The patient can no longer put things in a set place and is then unable to find them again. He can still remember events in which he was emotionally involved, but he has difficulty with placing them in the totality of his experiences in time. That also applies to some extent to events from earlier on. In this stage of the disease the patient’s functionality, based on the cognitive powers, is approximately comparable to that of a child of eight to fifteen years of age. But he does in no way resemble a healthy child! Although walking itself is not yet impaired, there is already a certain slowing down of movements, which are now less intentional and purposeful and more hesitant. In conversation it is apparent that the patient has increasing difficulty in following the general line of thought. He stops in the middle of a sentence and the conversation now and then becomes incoherent. He himself or his experiences are usually the subject of his conversation. Phase II: Fragmentized experiences In the following phase of the disease (dementia phase II), when the experience of time and space has become still further disturbed, the patient’s more direct living space, as represented by the time and place in which he lives, is also involved in the dementia process. He has difficulty in making the connection between the space within the home and outside the home. That is why he often has no idea of what sort of weather it is. This can result in his going outside in the middle of winter in flimsy summer clothes. It now also happens that he can no longer find the way in his own town or village, where he has been living for years. He often does not even know the address where he lives. Not only is he constantly losing his personal belongings; he now also begins to lose himself. His experience of time as a continuum of series of successive and connected moments or events is seriously disrupted. He no longer has much idea of the succession of days, months, seasons or the calendar year. Within the space of his own home, he can still orientate himself, but outside the home this is no longer possible. In unfamiliar surroundings, if he is staying away from home, he quickly becomes disoriented and agitated. He is now virtually tied to the house. That is the only place where it is still at all safe. Now he also has problems with handling the domestic appliances which he uses regularly, such as an electric shaver, a hair dryer, a toaster, or simple tools, such as a hammer or pincers. Selecting his own clothes also presents great difficulties. Functionally speaking he has the capacities of a child aged between five and seven. It becomes more difficult to manipulate things; he often gazes intently at his hands, as though they were the source of the problem. He now loses track of the cohesion of the simple things and events of daily life. He becomes a person concerned with components, details, fragments of activities, which with encouragement and sometimes with guidance he can still carry out, though he often no longer knows why he is doing them. He can no longer take a comprehensive view of the connection, of the totality.

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This fragmentation of experience into separate uncorrelated, disconnected moments now also begins to leave its mark on the motor mechanism of walking. This too loses its purposefulness. This becomes particularly evident if he is left to himself and nobody is occupied with him. The initiative to move is lacking, with the result that he sometimes spends a long time sitting aimlessly in a chair. Or, prompted by an indiscriminate urge to move, he walks restlessly to and fro like someone who does not know what he is looking for. His movement as a whole becomes retarded. His speech becomes slower, the sentences become shorter and there is a loss of spontaneity. He answers when addressed, but does not usually begin a conversation himself. He often gets stuck in the middle of a sentence and then changes to the subject he had talked about earlier on and which is now broached without any apparent reason. Or he may talk incessantly about one and the same subject and cannot let go. Under certain circumstances involuntary rigidity of the muscles can suddenly occur. This is clearly to be seen when he is touched by another person, especially if he is touched suddenly and unexpectedly or roughly. It is as though his body is protesting at being moved. Only if the other person’s movement is transferred to the patient slowly and calmly, can the patient move with the other person. He can no longer adjust himself to a different tempo. His living space continues to shrink. Phase III: No notion of time and space During the following phase (dementia phase III) of the illness the cognitive powers drop from the level of a five-year-old to that of a two-year-old child. The patient can now no longer structure the living space of his own home. He loses his way in the house where he has lived for years and wanders about aimlessly and restlessly. It has become too big for his powers of comprehension. He can only cope alone to any extent in the restricted living space of the room. The closer together the things are which he needs, the better. He now has totally no idea of time and even finds it difficult to distinguish between day and night. The biorhythm of the body becomes disturbed: he periodically sleeps or dozes during the day and is often restless for long periods during the night and keeps getting out of bed. The connection between the experiences of the past with the reality of the present is now broken. Fragments of past experiences loom up in his mind and are re-experienced, as though they were happening now. Our personal past gives us something to go by in the present. When the past has been lost, the personal identity disintegrates and everything becomes meaningless, strange and unfamiliar. That leads to unpredictable behavior, to symptoms of psychosis. The coherence of the patient’s own body, of the parts of the body and of their position in space, the concept of the body, gradually becomes disturbed. Notions such as left and right disappear. His own hand is sometimes experienced as strange, while someone else’s hand is sometimes confused with his own hand. A hand in this situation can no longer be used as an instrument. The patient becomes increasingly clumsy. Automatic movements, such as putting a signature, now also disappear. Even daily articles of use, such as a comb or a toothbrush, can no longer be handled effectively. The use of a knife and fork is lost, but the patient can still feed himself with a spoon, just like a young child.

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Items of clothing confuse him, since they are always changing their form when he takes hold of them. He is sometimes even unable to find his own arms and legs. When the body scheme is disturbed, taking a bath also becomes a difficult and frightening experience. While gentle sponging down can be tolerated, the sudden descent of water on the body in the shower can be terrifying and confusing. Going to the toilet also becomes a confusing affair when there is a defective body scheme and it is no longer possible to carry out all the necessary actions in the right order. At first the patient can carry out the component actions involved in this daily physical self-care himself, but he needs constant instructions from someone else to be able to do it. These instructions are only of use if they are as simple as possible and accompanied by gestures. The caregiver now has partially to take over these activities from the patient. Speech now becomes increasingly fragmentary. The succession of words in time is lost. The patient can only form very simple sentences and there is often hardly any more interconnection between the words. He can still answer simple questions concerning himself with short standard sentences. The patient’s disturbed experience of his body is reflected in his movements. As his intellectual space shrinks, so does the actual locomotor space. The hand now becomes no more than an extension of the arm; the wrist becomes less mobile. Undifferentiated reflex grasping replaces purposeful manipulation with the fingers. The gait is slower with small steps, the posture is slightly stooping, the trunk is stiff, the arms are held stiffly against or in front of the body. His gaze is mostly directed straight ahead into the vague distance, or towards the floor, his head hardly turns. Walking is no longer a purposeful and goaldirected change of position in space, but has become a rambling movement, mechanical and stereotype, whereby the patient is withdrawn into himself, no longer oriented to the world. The expressive movements are also very impoverished. Any initiative has totally disappeared. That is particularly evident when the patient is left to himself. All his movements are slow and extremely hesitant. His face reflects little emotion. However, if someone takes an interest in him, invites him to do something and stimulates him to interaction, a complete metamorphosis can suddenly take place. Sometimes he can laugh again, his movements become livelier and he can even walk a little faster. He can still enjoy the play element with the other person. He appears to revive at the moments at which he can be a child again. However, if he is deprived of one of the most elementary freedoms of every living being, namely the freedom of self-movement, then he becomes agitated and angry. The body is now captive in its own involuntary rhythm of movement, slow and gradual, without sudden changes. If these are imposed from outside, by suddenly or roughly taking hold of the patient, his muscles stiffen automatically and unconditionally and he offers resistance. But if the caregiver directs him gently with unhurried movements and friendly words, he usually cooperates. During the last period of this phase the patient loses control over urination and finally over defecation. Released from the control of the frontal cortex, the functions of urination and defecation are now once more mediated solely by reflex mechanisms, just as in the young child. At this point in time, other reflexes, which in the healthy adult are suppressed by the frontal cortex, such as indiscriminate grasping or sucking when handpalm or lips respectively are stimulated, become again apparent. He is now

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incontinent and is totally dependent on the caregiver for his daily care. The caregiver has to take over all these activities completely. Phase IV: No more awareness of himself The last phase (dementia phase IV) of the disintegration process in the cognitive functions has now arrived. The experience of space, time and his own body no longer exists. The patient knows nothing more about himself. He can still utter a few words, but even this very impoverished vocabulary is finally lost almost entirely. Sometimes one or two words are left, which are used to answer every question. Walking is now nothing more than an extremly slow and hesitant semi-shuffling or tripping movement. When he walks, he raises his heel from the ground, but the forefoot usually remains in contact with the ground and is pushed forward, after which the heel touches the ground again. It is only when he occasionally walks a little faster, for example if he is excited, that the forefoot is also lifted free of the ground. Turning round still goes very slowly to start with, whereby one leg is used as a pivot and the other leg is slowly pulled round to join the first. His posture is stooped forward, or may very occasionally be stooped backwards. He is quickly inclined to fall. He can no longer sit down independently or stand on a stair. The body muscles go rigid at every sudden touch. Even when the patient is seated, sudden and involuntary heightened muscular tension can sometimes occur, which only goes away during sleep. The hands can now only take hold of things automatically and can only let go of what they are holding with great difficulty, if the caregiver tries to loosen the grip. If something is brought towards the patient’s mouth, edible or inedible, the mouth opens to grip the object with the lips and when contact has been made with the lips, sucking and sometimes biting occur automatically. The way in which the brain now works is incompatible with walking independently and this function is now rapidly lost. The patient can no longer stand up alone. Feeding himself with a spoon also becomes increasingly difficult and finally becomes impossible. At first he can still bring a mug to his mouth, albeit with difficulty. The only thing which is still possible is eating with the hands. About a year after he has lost the ability to walk independently, he can no longer sit upright in a chair without support. The postural and righting reflexes no longer function. He can no longer adjust his body to changes of position. He often tilts over to one side, which can sometimes give the impression that he has had a stroke. The hands now only grasp when something is put into them, or when they accidentally come into contact with an object. Often his legs keep crossing over one another automatically. He now needs complete help with eating and drinking—the only thing he can still do himself is very slowly chewing and swallowing. If he is no longer taken out of bed and his limbs are not regularly passively moved by the caregiver, then the continuously drawn-up knees, the bent hips and bent back quickly stiffen and contracture of the joints occurs. The skin of the legs and back becomes shiny and atrophic and decubitus can easily occur at pressure points. The expressive movements have now been extinguished to such an extent that not even a smile is still possible. The head can no longer be moved independently. However, strong involuntary muscular tension often occurs in the neck muscles, whereby the head

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is constantly lifted from the pillow. Every physical contact with the patient, every attempt to turn him, causes automatically general, and probably sometimes painful, muscular tension in the body. Sometimes the limbs or the body make sudden jolting movements. The patient can no longer chew. He often tends to choke. Aspiration pneumonia usually leads to death in this phase. In conclusion The patient suffering from Alzheimer’s disease thus travels the way back to the helplessness of the newborn baby and goes through the functional development phases in the reverse order in which he had learnt them as a child. Alzheimer’s disease leads to an extremely gradual slowing down and cessation of all movement. All parts of the motor mechanism gradually become increasingly dysfunctional, including the pyramidal and the extrapyramidal system. As has been remarked earlier, in the normal process of growing older slight locomotor disturbances can occur, which possibly indicate a change of function in the extrapyramidal system. The consequences of this change for the automatic movements of older people can to a certain extent be compensated by deliberate effort and by increased visual attention to the immediate environment. When this deliberate effort and increased visual attention are no longer possible because of the loss of the influences from the cerebral cortex, which results from the dementia process, the loss of automatic movement can no longer be compensated. The similarity, which at first sight appears to exist between the Alzheimer patient’s return to earlier functional phases and the phases as they occur in a child, does not make him into a child again. The baby, the infant, the toddler and the schoolchild are complete and intact human beings in their own phase of development. The Alzheimer patient becomes increasingly incomplete, increasingly defective. Being in one’s ‘second childhood’ is not the same thing as becoming a child again. Nor must the patient be treated as a child. Where he is indeed often like a child, is in his receptiveness to simplicity, information, praise and playfulness things of life. It is often noticeable that Alzheimer patients and small children can get on with one another extremely well. The caregiver who has not forgotten the child within him, will often achieve the best results.

CHAPTER 5 PHASES IN CAREGIVING How ill is the patient with Alzheimer’s disease? He usually looks quite healthy and exhibits no signs of physical suffering, such as emaciation, shortness of breath or pain. During the greater part of the course of the illness there are no clear symptoms of physical disability, such as occur for instance in patients with serious arthritis or after a stroke. An extensive physical examination does not usually reveal anything particular. The patient does not as a rule seem subject to evident prolonged mental suffering, such as occurs with someone with a serious depression. He quite often even makes a carefree impression to the outsider. In some cases he looks younger and robuster than he really is. He often refrains from calling on other people to help him. Indeed, offered help is often refused. From the superficial angle he can initially camouflage his handicap fairly well, especially for those who are not daily involved with him. However, he is indeed absent-minded and awkward, takes no initiative, is entirely passive, monopolizes his partner’s attention and can let fly at his caregiver on the slightest provocation. He often takes no account whatsoever of the feelings of his partner or caregiver. He insists on being treated in accordance with his age and status, while his behavior may resemble that of an unruly and obstinate child. This is particularly true in the relationship with his partner on whom he is dependent. In a casual contact with a stranger on the other hand, he can be quite pleasant and charming. It is his partner and caregiver however, to whom he has to surrender his independence. It is this contrast between being apparently normal and healthy and the inability to take account of the feelings of the partner or caregiver, on whom he becomes increasingly dependent, which often makes it so difficult to care for the Alzheimer patient. No wonder that the caregiver, especially if he or she is the life partner, experiences frustration and desperation. The disability of the Alzheimer patient is different from that of the physically disabled. The latter is able by means of practice and training to regain the loss of a physical function, or can compensate for it by developing alternative skills. The Alzheimer patient can no longer learn anything new: he cannot regain a once lost function, nor learn new skills which could compensate for the loss. The body, the extremities, the ‘tools’ still remain intact and ready for action for a long time. But the programing, the plan of action and execution slowly disappears. An intact but “unmanned” body, incapable of purposeful activity. Uncontrolled, but not necessarily totally uncontrollable. The caregiver has gradually to take the place of the helmsman. He has to draw up the plan of action and execution and help the patient to carry it out. In doing so he must take account of the individual needs of the patient. These needs depend on the phase of the

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illness in which the patient finds himself. The caregiver also has the difficult task of getting the patient to accept his help. 5.1 ACTIVITIES The activities which gradually, in the course of the disease, have to be taken over by the caregiver can be divided into three broad groups. The first group consists of activities which are concerned with the way in which the individual person makes contact with society, in the broadest sense of the word. This includes the activities of his work, dealing with his financial affairs, social contacts and recreational activities. This group comprises the most complicated activities, which are only fully developed in the growing individual at a later age. The interaction with an ever changing environment makes continual demands on new initiatives, on the ability to assess, to adapt and to distinguish. These are the activities which are the first to become disturbed in the Alzheimer patient and with which he first needs help. The caregiver soon has to take them over in their entirety. A second group consists of the activities within the patient’s own direct environment. This includes most domestic activities. In the earliest phase of the illness the patient can still perform the daily routine tasks himself. But for everything which requires planning, he needs the help of the caregiver. The third group of activities consists of the actions involved in body care. This comprises bathing and washing, dressing and undressing, going to the toilet and eating and drinking. These activities, which are performed more or less as a routine, do not become disturbed until a later phase of Alzheimer’s disease. At the beginning of the illness the patient can still perform them himself with the encouragement of the caregiver. In a later phase the caregiver has gradually to involve himself more and more in the performance, until finally he also takes over these tasks entirely from the now totally disabled person. It must be borne in mind that the important point is whether the patient can still carry out a particular activity on the instructions of the caregiver; whether he can still make his arms and legs work to achieve the caregiver’s preconceived goal. It does not matter how quickly or efficiently he can do it or how skilful he is. Skillfulness does not depend solely on the cognitive functions, but also on general physical factors and on age. An example: dressing For a healthy person it is sometimes incomprehensible why the Alzheimer patient has so much difficulty with daily routine activities. However, when an activity, such as dressing, has been broken down into its component parts, then it appears how complicated it actually is. The necessary actions follow one another in a particular order. This order, the plan of action, must be known and comprehensible to the person who has to carry it out, otherwise he cannot perform the activity. Thus he needs insight into the actions and the sequence thereof.

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In the first place there must be reasons for getting dressed, for example to go to work or because visitors are coming. Then the initiative and the decision must be taken. There must be a mental picture of which actions and component actions must be carried out in which order. The patient needs to know what he is going to do on that particular day and what sort of weather it is, in order to be able to choose the right clothes. He must know where the necessary clothing is kept and be able to distinguish between the various available items of clothing. He must be able to distinguish the colors, the material and the shape. He must know which of the clothes to put on first: first underwear, then outerwear. He must be able to distinguish between the inside and the outside, front and back, left side and right side of the garment and hold them in the right position with regard to his own body and parts of his body. That means that the patient must be oriented to the scheme of his own body and of the parts of the body in relation to one another. All this information is necessary, so as to be able to combine the continually changing form of the garments and the necessary changes of position of arms and legs, such as bending, stretching and turning, during the process of getting dressed. Otherwise the patient literally gets lost in the garment and this can lead to frustration. While getting dressed, posture and movement must be continually adjusted and coordinated. It must be possible to assess and adjust superfluous or erroneous movements and account must be taken of required and available muscle power. In the event of giddiness or threatening loss of balance the person must have the presence of mind to sit down. During the action there must be the ability to remain oriented and adjusted to the environment. At the same time the plan of action must be kept in mind and the person must be able to follow the progress of the activity and to concentrate on details, if these require more attention. Thus the total activity calls for precise attunement of the cognitive functions with the sensory information and the motor system. It follows from the above that even a daily routine such as dressing can become a confusing and frightening experience, if the cognitive functions, the sensory information and the motor system are disturbed, as in the Alzheimer patient. The patient also has to adapt to the caregiver and his manner and tempo, which are often determined by the time available. Adapting himself means letting himself go to a certain extent, adjusting his own posture and movements to those of another person, and that is something the patient cannot do. Unexpected movements by the caregiver can cause heightened muscular tension in the patient, which is then interpreted as unwillingness to cooperate. If the caregiver does not realize this, then it can lead to irritation, argument and even to blows, whereby all action comes to a standstill. The patient often fails to understand the goal of the activity and the presence of the caregiver. Nor is he aware of his own limitations and ignorance. The caregiver of course knows what the goal of the action is. If he is able to imagine how the patient experiences his activity, his presence and his exertions, then he will be better equipped to help the patient. Not only as efficiently as possible, but also as dignifiedly as possible.

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5.2 OBSERVATION All forms of caregiving begin with observation of the person who is to receive the care. Observation is the most important method to gain information about the patient and get to know his specific needs. Observation is directed in the first place to the functionality of the patient: the degree to which the patient himself is still able to perform all the skills and activities, which are necessary for him to hold his own and to look after himself. Apart from functionality, observation is also directed to the patient’s behavior, as expressed in his speech, his movements, his emotions and his contacts with, and reactions to other people. Ultimately the observation is concentrated on his body itself and on the physical functions. Knowledge of the patient’s past and of his illness are essential, if the caregiver is to use his observation of the patient to recognize and understand certain functional defects and individual and characteristic behavioral patterns. Only then is he in a position to make a proper assessment of the situation, on the basis of which he can decide on the best course of action. The observation must extend over a sufficiently long period of time and should ideally be continuous, so that the caregiver obtains a picture of all the patient’s activities during both day and night. As regards skills, the caregiver observes the way in which the patient performs an activity, in which part he has special difficulty and whether he shows signs of clumsiness or slovenliness. The following points must be borne in mind with regard to the patient’s behavior: whether and how he reacts to the fact that he cannot do certain things for himself; occurrence of panic reactions; sudden changes in behavioral patterns, facial expression or body language; occurrence of heightened or lessened motor activity; acute confusion and stiff movements resulting from involuntarily heightened muscular tension or from actively resisting the caregiver. As regards the body and the physical functions attention should be paid to the patient’s degree of alertness; possible consequences of falling, such as swellings, bruises or a sudden change in the functioning of an extremity; constipation; decubitus; state of the teeth; rise in temperature, in short, to every change which occurs. For supplementary information the observations of house-mates, members of the family, friends, the patient’s general practitioner and people with whom he regularly comes into contact are also necessary. Through these sources information can be obtained on his habits, environment, character, previous personal history and state of health. On the basis of all the available information the caregiver can now draw up a plan of action.

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5.3 MAINTENANCE OF FUNCTIONS: KEEPING THE PATIENT INDEPENDENT The caregiver’s goal must really be to ensure that the patient can manage as long as possible with as little help as possible. In practice this means that he lets the patient himself do everything, which he still can do for himself for as long as possible. This is vitally important for the patient’s sense of self-esteem and his emotional wellbeing. If everything is taken off his hands and there is nothing in which he is still actively involved, then he loses his grip on his environment and on his body to an ever increasing extent. The help offered must be such that it only compensates for the functions which the patient has lost. If, in the first phase of the illness, the patient shows no initiative to wash or dress himself, then he must be encouraged, but that is all. If, in a following phase, he cannot collect up all the objects he needs for bathing, then he must be helped to do this, but not with bathing itself. If, in a still later phase, he has difficulties with bathing itself, then the caregiver must help him to structurize the component actions, but must not at once take over all the actions. That is only necessary in the last phase of the illness, when the patient himself can no longer do anything at all. Thus the right amount of help can be offered by providing it in stages. It is therefore important for the caregiver to know what the patient can still do in a particular phase of the illness. For optimal help it is not sufficient that the caregiver knows what the patient cannot or will not do any more. The caregiver’s attitude towards the patient often has an immediate repercussion on the latter. If a person is disoriented, everything is to him potentially frightening and incomprehensible. A caregiver, who is indecisive, hasty or irritated, frightens the patient. Just as a child, the patient needs a stable, well structured environment and people who understand him and are sympathetically inclined towards him. The caregiver, who is himself well-balanced and does not convey his frustrations or negative feelings to the patient, is the only one who will achieve optimal results. He involves the patient in a playful manner in an ensemble of movements. Helping becomes a game with two players, whether it is a question of recreation or of daily recurring activities. Only the caregiver knows the rules of the game and knows that the movements playfully performed with the patient go according to the caregiver’s or the care team’s preconceived plan, directed towards a certain goal. The patient follows the caregiver’s lead. It is important that there should be a general care and nursing plan, which can be adjusted to the individual needs of each patient. 5.4 MAINTENANCE OF FUNCTIONS: KEEPING THE PATIENT ON THE MOVE Maintaining the patient’s functions means keeping him on the move in the broadest sense, physically, emotionally and socially. The final phase of the illness is one of total

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mental and physical immobility. The patient is always underway towards that phase. The more he is left to himself, the sooner may he become immobile. That applies both to intellectual movement and being emotionally moved, as well as to physical movements. Life is movement. A patient, who is continually under sedation in a wheelchair or in bed and who is ‘no bother to anyone’, cannot possibly be the aim of the caregiver. Sedation then becomes the Latin ‘sedeo’, which means: ‘to place in a chair’, to make passive, to strap down. This may under very special circumstances occasionally and temporarily be justifiable for the wellbeing of the patient, if he is in a state of great anxiety or agitation and can be a danger to himself or to others. It is however usually possible to point to the patient’s source of agitation and to rectify it without taking such drastic measures. The protracted and indiscriminate use of sedatives for Alzheimer patients is very difficult to justify. It only pushes them further towards the final phase. 5.5 TRAINING AND THERAPY Various forms of therapeutic treatment can make considerable contributions to the wellbeing of the Alzheimer patient, even though the ultimate goal of most of the forms of therapy cannot be achieved, because these are aimed at restoring or compensating for the lost functions by means of training, that is to say by systematically practising certain skills. However, for the Alzheimer patient this is virtually impossible, since this requires insight, motivation and resilience and these qualities are missing. An additional problem is that the defect to be treated in the Alzheimer patient is not stable, but becomes increasingly serious. Functions once lost are therefore usually lost for good. The value of the various forms of therapy in the patient with Alzheimer’s disease lies in the provision of stimulation of activities in a structured environment. Since his own motivation and purposefulness are lacking, the patient can only be meaningfully active if he is stimulated and offered a structure, which he cannot provide for himself. Stimulation and providing a structure are therefore extremely important aspects of every form of caregiving. In the last phase of the illness, when all forms of self-movement have ceased, daily massage of the muscles and the passive movement of joints in order to prevent contractures are left as the principal possibilities of activation. 5.6 ADJUSTMENT Depriving the patient of his freedom of movement by strapping him down or sedating him is never justified as a means of compelling ‘adjustment’. Nor is it “for his own good”. To adapt oneself is to make a conscious choice, which calls for insight into the relation between oneself and the situation to which one is going to adjust. It calls for initiative and motivation. All these functions are disturbed in the Alzheimer patient. On his own account he can only resist or passively submit to a particular situation. The Alzheimer patient is confined in his own distorted world. Repeated running away and standing by or opening all sorts of doors are often vain attempts to escape from it.

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Restraining him means even taking that chance away from him and leaving him screaming and banging as the only possibilities. However, the healthy person can try to enter the patient’s world if he wants that. Whether he is a welcome or unwelcome visitor there, depends on his approach. The contact between the patient and the healthy person takes place principally at the emotional level. Understanding and the ability to place oneself in another person’s position play a very important role. Emotional reactions to his environment occur very quickly in the patient, sometimes continue for some considerable time and are no longer mitigated by insight, reflection and rational thought. The patient’s behavior is indeed determined to a great extent by the caregiver’s approach. The patient’s reactions to the other persons attempt to approach him also depend on his own previous history. Traumatic experiences from the past often surface again during the illness. They obsessively intrude on him and partly determine the patient’s basic feelings. As a result of the illness some personal characteristics may emerge in an intensified and uncensored form. For instance, someone who has always been dominating, will have difficulty in accepting his enforced dependence. Agression can easily come to the surface. If the caregiver adopts a ‘bossy’ attitude, this can unexpectedly lead to shrieks or blows on the part of the patient. Knowledge of the life history and character of the patient is indispensable for the caregiver. 5.7 CAREGIVING AND THE EXTENT OF LOSS OF FUNCTIONS, STAGES OF DECLINE AND STAGES OF CAREGIVING At the beginning of the illness the patient with Alzheimer’s disease only needs help with the most complicated activities. But the further the illness progresses, the more help he needs, even with the simplest activities. It is characteristic of Alzheimer’s disease, that the patient loses his cognitive powers and the acquired functions derived from them in a sequence, which is roughly the reverse order to that in which he learnt and acquired them. What he has learnt last, is the first to be lost. From this perspective the illness can be divided into stages, each of which is characterized by the loss of certain functions. In each following stage functions, which were still partially present in preceding stages, are now lost completely, and functions, which were still completely intact in the preceding stages, now become partially lost. Broadly speaking the course of the illness can accordingly be divided into four successive stages of progression: I. The stage of loss of planning and initiative. II. The stage of loss of insight, judgment and motivation. III. The stage of loss of acquired, more or less routine activities and speech. IV. The stage of total loss of spontaneous motor (locomotor) activity. All these stages merge gradually into one another. The nature and degree of the caregiving must be adjusted to the nature and degree of the loss of functions in these four stages, if the patient is to be kept functional as long as possible.

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Therefore from the point of view of the caregiver, the illness can be divided into four stages of caregiving. The caregiving stages correspond to the four stages of the disease mentioned above. The caregiving stages are: I. The stage of supervision and stimulation. II. The stage of intervention. III. The stage of partial take-over of activities. IV. The stage of total take-over of activities. With each successive stage the caregiver’s involvement in the activities of daily life increases. For each stage a comparison has been made with the corresponding phase in the normal functional development of the growing child. Subsequently there is discussion of: the average duration of the stage; the changes in the patient’s cognitive and operational capacities and in his general way of functioning, which is based on these capacities; the changes in the speech functions, the motor system and the general behavior of the patient. The possible consequences which all these continual and particular changes in the patient entail for the care and nursing and the attitude which the caregiver adopts towards the patient also comes up for discussion. In each of these four stages of caregiving, the limit of the patient’s cognitive and physical powers can be delineated. This predetermined limit forms the basis for assessing the degree of care required. In this way a comprehensive layout of potentialities has been created: the LIMIT scheme, which is a general plan for the care of the patient with Alzheimer’s disease. The aim is to provide the primary caregiver with pointers for his daily contact with the patient. The LIMIT scheme consists of four stages of caregiving, which run parallel and are adjusted to the four phases of the illness. A survey of the four stages is given below. The LIMIT scheme is elaborated in Part 2 of this book. 5.8 I—THE SUPERVISION AND STIMULATION STAGE During a period of about two years the cognitive level on which the patient functions drops back from the comparative cognitive level of a sixteen-year-old to that of an eightyear-old. In this stage of loss of initiative in taking care of ones own affairs, the caregiver’s most important activity is that of stimulation and incitement to action. Insight and the power of judgment begin to become disturbed. But it is principally the loss of planning and initiative in the patient which is noticeable and gives other people the impression, that he is depressed, obstinate, lazy or indifferent. The beginning of the loss of intellectual control over his emotions leads to his being more quickly irritated, depressed or having more changes of mood. He is less able to relativize a particular situation. The notion of time and space, in so far as not directly related to the situation at a given moment, undergoes a change. This makes everything, which calls for planning over a period longer than one day, extremely difficult—an overview of a situation is no longer possible. Most activities concerning financial and

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legal affairs have therefore to be totally taken over from the patient. All household affairs, which call for longer-term planning, such as major repairs, must also be taken over. The work plan for the daily routine activities is still comparatively intact, such as the activities for the daily physical self-care and the preparation of very simple meals. But all activities which fall outside the scope of the daily routine are viewed by the patient with anxiety and tension and call for guidance from the caregiver. These include most of the social and recreative activities. The actual speech is usually not yet impaired, but the content of conversation loses its value. The patient has difficulty in structurizing the conversation and leaves the initiative to someone else. His conversation becomes rather superficial; he is easily diverted from his subject and lapses into repetition. His bodily movements and gestures are less purposeful and assured, when he is left to himself and not stimulated to do something by somebody else. However, the motor system itself remains intact. As far as the partner and/or caregiver is concerned, these changes call for understanding and empathy; the capacity to imagine how the other person is feeling. He must stimulate and encourage the patient to act, and supervise his activities, but without ordering him about or patronizing him. 5.9 II—THE INTERVENTION STAGE: GUIDING THE PATIENT As the dementia process progresses, the patient’s cognitive level of functioning drops back from the comparative level of a seven-year-old child to that of a five-year-old. The phase during which this change takes place lasts about two years. Insight and power of judgment, motivation and initiative are now almost entirely lacking. The arbitrary direction and maintenance of attention to a particular goal is highly disturbed and the patient is easily distracted by anything which happens in his vicinity at any given moment. He can no longer choose efficiently from all the information which comes towards him from his environment, he can no longer determine what to react to and what not. The demarcation lines of time and space, as for example day and night and the seasons, which give the world of experience its stability and structure, become increasingly vague for him. He easily gets lost when he is outside, becomes diverted and distracted, and is no longer able to determine direction. As a result his hold on the world becomes looser and looser, his thoughts and emotions break adrift and are much more easily influenced by the circumstances. Like a ship with a damaged rudder, the patient now has to be taken in tow by the caregiver, to escape being delivered to the mercy of the elements. Sometimes he continually follows the caregiver, as if he were attached to him by an invisible towrope. The plan of daily routine activities now also becomes disturbed. Often the patient is unable to determine the order in which activities, such as washing and dressing, eating and going to bed, take place. He now needs continual guidance from the caregiver, otherwise he will simply neglect himself. He can still perform the daily routine actions, provided the caregiver puts everything out ready for him. Simple domestic activities can also still be carried out under supervision.

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The subject of the patient’s conversation becomes increasingly determined by stimuli from his direct environment or by emotional impulses. He often rambles from one subject to another. He often speaks with a soft voice. Conversation topics, which had already been finished with, are brought up again at random. He forgets the names of people and things. He often comes to a standstill in the middle of talking because he forgets what he was going to say. He can only understand simple directions. This is important when the patient has to be given instructions. The informative function of a conversation suffers considerably from this restriction. That is why verbal stimulation alone is now insufficient to evoke action. His movements and gestures become more and more uncertain when he is left to himself. The transition from one locomotor activity to another becomes more difficult, which results in more repetition of movements. The passive movement of the patient’s arms and legs by the caregiver may be accompanied by perceptible involuntary muscular resistance. His body repels changes from without. He can also be disturbed by emotions from the outside world and from another person and he often resists the intervention of the caregiver. His emotional life becomes emptier and his emotional instability can lead to fits of crying or outbursts of anger, if he is frustrated. Thus it is often very difficult for the caregiver to prompt the patient to perform the necessary activities for his physical self-care. He has to guide him towards, and accompany him in the activity and actively intervene when and where the patient cannot manage on his own: in the organization of the activity in time and space. The best thing is for the caregiver to determine the actual time of the activity and to put everything ready, which is needed to perform the activity. He observes the patient during the activity, encourages him to go on with it and guides and assists him when he gets stuck. This must be done in a quiet, friendly but self-assured way, without issuing commands and without exhibiting impatience. The patient is, as it were, invited by the caregiver to join him in performing the activity together. 5.10 III—THE STAGE OF PARTIAL TAKE-OVER At the beginning of this stage the patient functions on the comparative cognitive level of a five-year-old. Within a period of about two and a half years he drops back to a comparative cognitive level of functioning of a child between the ages of two and three years. At the end of this stage he is unable to adequately respond to the urge of natural discharge, which renders him incontinent, both as regards urine and feces. Now that his failing reason can no longer motivate his actions, he is entirely lacking in initiative and insight into his own situation. The patient is now driven solely by his emotions. Thus he can only be moved by an emotional approach on the part of the caregiver. There is absolutely no point in reasoning with him any more, since that only confuses him and moreover makes him feel inferior and powerless. He can now only move about independently in the restricted space of his own room. Outside his room, in the large space of the house, he gets lost. Going outside the house is only possible under constant supervision, otherwise he inevitably loses his way.

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Even his body scheme, his experience of his own body and the way in which that reaches into and relates to the space around him, becomes disturbed. The perception of how a part of the body relates to the rest of the body can also form a problem. The patient has difficulty in distinguishing between left and right, between what belongs to his own body and what belongs to somebody else’s. Sometimes he is unable to associate the voice of the person talking to him with that person’s appearance. Although the caregiver is standing next to him, he goes to see where the voice is coming from. The concept of time is disturbed to such an extent, that he can no longer distinguish morning, afternoon, evening or night. He instinctively experiences the change in the environment, the different light, the frighteningly quiet and apparently deserted house, but he cannot understand it. Even the day-and-night rhythm becomes disturbed: at night he is subject to restlessness and the urge to move about, during the day to drowsiness and dozing off. The disturbed experience of his own body makes it impossible for him to carry out his physical self-care independently. He is successively unable to dress himself, undress himself, wash himself and go to the toilet without help. However, with the assistance of the caregiver he can still perform certain component parts of these activities. With the loss of the body scheme, the use of the hand as an instrument for handling objects also steadily decreases. It becomes increasingly difficult to eat with a knife and fork. Eating with a spoon is less complicated and does not yet pose great problems. With specific instruction the patient can also still perform simple domestic activities, such as putting out the trash can. Recreational activities, such as walking, swimming, dancing to music, coloring, are often quite possible with constant guidance and encouragement and can bring moments of great joy. At the beginning of this stage the patient can still follow simple directions, imitate the movements of the caregiver and talk in short sentences. However, any purposeful conversation is impossible. Objects can often no longer be called by their name and increasingly lose their significance for the patient. As a rule he takes no further initiative to talk. The subject of his conversation is principally influenced by direct associations with what he observes in his direct environment at that moment and how it affects his state of mind. He no longer understands the other person. His movements become ever slower and more indecisive, he takes smaller steps, the automatic swing of the arms when walking disappears, especially when he is left to himself. The patient can only walk quicker again if he receives encouragement. He can imitate movements made by the caregiver. If invited, he can still dance remarkably well to music with a partner. On the other hand and to an increasing extent his body automatically resists passive changes caused by someone else. If he is suddenly or roughly taken hold of, muscular rigidity occurs, accompanied by irritation and recalcitrance and sometimes by shouting and hitting out. Although the patient functions at the comparative cognitive level of a toddler, his experience is totally different to that of the toddler. The gradual disintegration of his world view and of his own body scheme is accompanied by increasing confusion, anxiety and perplexity. Restless walking to and fro and repetitive stereotype movements alternate with periods of great passivity and apathy. The patient can get so frightened and agitated,

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that he starts to be verbally and physically violent. This happens particularly in the later part of this stage, if the caregiver takes hold of him to undress or wash him. He may experience that as agression by the other person, as a personal attack on him. The same sort of experience can occur, if the other person suddenly interrupts him in what he is doing. A quiet, encouraging and friendly attitude is required of the caregiver. Anything which can frighten the patient, such as suddenly taking hold of him, looking cross, angry words or shouting at him, must be avoided. Above all it is essential to have a great deal of patience. It has a soothing effect if he is regularly addressed in a calm and friendly tone. There is absolutely no point in entering into discussions or arguments with the patient. When assisting him, the caregiver can best approach him from the side, so that the patient can see the caregiver all the time. If he is approached from behind, it scares him and he may resist and start hitting out and lose his balance. If he is approached ‘head-on’, he may experience it as a confrontation. Insight, tact and sympathy are extremely important to the dementing man or woman, who in this stage of the illness is experiencing the total disintegration of his self. 5.11 IV—THE STAGE OF TOTAL TAKE-OVER At the beginning of this stage the patient’s functional capacity compares with that of a child of eighteen months. During the coming three to four years he will gradually entirely lose the capacity first to verbalize and then to walk. As a rule verbalization is lost before ambulation, but this is not always so. After that he even becomes incapable of sitting up. When, finally, he cannot even smile or lift up his head any more, then he has travelled back the entire way from adulthood to the helplessness of the newborn baby. He can continue to live for years in this state. He may then also lose the power of swallowing. He can only see people and objects in his immediate environment. However, the objects have no significance for him. He takes them in his hand and keeps hold of them, just as a baby does. Dressing, undressing, washing, bathing and toilet hygiene have to be taken over entirely by the caregiver. The patient can no longer cooperate in these actions in any way whatsoever. Initially he can still eat with a spoon and drink from a mug or cup himself, provided the food and drink is put within his reach. He cannot manage it without making a mess. He can still chew, but only very slowly and food is kept in the mouth for a long time. At the beginning of this stage he can still say a few short sentences of three or four words. He can sometimes say yes or no to very simple questions. Forcefully made attempts by the patient to verbalize may lead to spasmodic repetitions of the same word or syllable. Although it is no longer possible to carry on a conversation with him, he finds it pleasant to be talked to in a friendly way. It is primarily the contact itself with the other person which he values. About two and a half years after he has become completely incontinent, he can no longer speak spontaneously. If his name is pronounced loudly, he can still say “yes”. Some patients still recognize their own given name. At first the patient is not yet completely immobile. He can walk, but he does this by first putting the ball of the foot on the ground and then the heel, walking with small steps. When turning round, he alternately uses one foot as a pivot, while the other foot is

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dragged next to the first. Trunk, knees and elbows are increasingly more bent. He holds his arms stiffly against his body or stretched out as though he is feeling for something. He can go on walking like a robot for long periods without any clear goal or direction, purely as it seems to stimulate himself. In so doing he can sometimes spend a considerable amount of kinetic energy and can even still take pleasure in movement itself. He cannot sit down in a chair by himself, but he can sometimes manage to get up from a chair. Involuntary muscular tension now invariably occurs, whenever he is taken hold of or passively moved. This is accompanied by an automatic clutching at whatever is within his reach: the arm of a chair or the caregiver. When something is moved in the direction of his mouth, then the mouth opens automatically. When something is put into his mouth, edible or inedible, he often automatically sucks or bites it. About a year after he has lost the power of speech but can still make mumbling sounds, he can no longer walk independently and becomes permanently chairbound. The simplest arm and hand movements are now so slow, laborious and imprecise, that he can no longer feed himself and requires the caregiver’s help. The posture reflexes, which help to keep the trunk and the head upright, finally become so disturbed that the patient cannot even sit up or hold his head up without being supported. Heightened muscular tension occurs with increasing severity in particular in the flexors of the neck, arms, hips and knees. Other neurological symptoms may now occur, such as involuntary muscular twitching of arms, legs and trunk or continual movements of the lips and tongue. In this stage the patient is usually much calmer. He often sleeps for long periods of the day. There may sometimes be periods of screaming, groaning or making chattering noises. It is the only way in which he can still express vague feelings of pleasure or displeasure. When there are lengthy periods of screaming, there should always be an attempt to ascertain a possible cause, usually pain. The caregiving now mainly consists of dressing and undressing, washing, changing and feeding the patient, who is now as helpless as a newborn baby. However, just as with a baby, even the totally demented Alzheimer patient continues to need human contact right up to the end. The caregiver can provide that contact with the patient by means of talking and singing to him, caressing and stroking him, especially when he is caring for him and feeding him. The caring human touch is the last and most vital line of communication, the umbilical cord, by which the human being remains connected to his fellow men and to the world. Even the most demented person belongs to the world.

CHAPTER 6 PARTING Human life begins within the security of the womb. It begins in total dependence on and togetherness with the other person, the mother, as a part of the other. Birth is parting for the first time. It is accompanied by pain, both for mother and child. From that moment onwards parting is a companion for life. Growing up from child to adult, the whole process of upbringing is ultimately accompanied by parting, casting off the old ties of dependency. The conscious severance of the ties of physical dependency can forge new and stronger ties of mature emotional and intellectual attachment and is a prerequisite. Growing older is also a question of parting: breaking the self-made ties with a long period of productivity, parting from a long cherished or familiar way of life, from physical strength, from the house one has lived in for years, from old friends, from children and finally from ones life partner and from life itself, from the earth. Growing old need not only mean loss. It can also mean: being rich in experience and memories. However, physical handicaps often form part of the process of growing older. This also leads to giving things up, often simple things which give life its zest and which healthy people take for granted, such as being outside listening to the birds singing, hearing the wind rustling in the trees, feeling the warm touch of the summer sun or experiencing the busy hum of the city. The physically handicapped person needs someone else to help him go outside, where he can then enjoy what he hears and sees. Alzheimer’s disease even deprives the patient of enjoying these simple things of life by himself. He can only experience pleasure when the other person experiences it with him. He loses his grip on and his interest in the world. He can only be part of the world if we actively involve him in it. This was, for instance, clearly the case with a demented patient in a nursing home who tried in her own way to have quite a long conversation with a visitor who happened to be passing. Both experienced pleasure in the encounter. When the visitor had to leave, the patient kept hold of his hand and begged him: “Don’t go, please don’t go.” Her world had briefly become meaningful again. Alzheimer’s disease means: a continual and protracted process of parting—for the patient from everything which constitutes his world, for the partner saying goodbye to his ailing life companion. Caring for a patient with Alzheimer’s disease means: accompanying him on the journey to an unknown land, during which the sick person is gradually forced to lose himself and the caregiver gradually loses his companion. A continual parting in the course of the journey. The caregiver is the guide and traveling companion on the way. This means that the caregiver must know ‘the itinerary’, ‘the route’ and ‘the timetable’, otherwise he will get lost as well. The caregiver must have some idea of what the far off country looks like, in order to know what he and his companion can expect. He needs help from others to show him the direction to take and

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to keep on course. The less uncertainty there is, the better he can perform his task. How much certainty is there? What is the itinerary? What is the timetable? Predictable course Longitudinal research, in which patients with Alzheimer’s disease are followed for ten years or more, has made it possible to a great extent to chart the course of Alzheimer’s disease. The duration and course of the illness are now predictable. Approximately two years after the occurrence of the first clear symptoms of dementia (see chapters 4 and 5), the faculty of comprehension and the ability to carry on a conversation with another person on a simple subject become seriously disturbed. The patient loses the capacity of entering into the feelings and thoughts of his partner. About three and a half years after the first symptoms of dementia, the patient can no longer manage his daily self-care without help and his ability to express himself verbally or to understand spoken language is seriously impaired. About five years after the occurrence of the first clear symptoms of dementia the patient is incontinent. After another two years he loses the ability to walk alone. There is a period of about nine years in all between the first clear symptoms of dementia and the moment that the patient is permanently chairbound and has completely lost the use of words. If the partner knows what is ahead of him or her, then some of the uncertainty, doubt and fear is removed and plans can be made for the future. Moreover, the realization of what it means to the patient to lose his world can contribute considerably to a better understanding of his often incomprehensible behavior. With the aid of this knowledge the partner is much better able to judge the patients actions, which result from his altered perception of the world. Parting from a husband, wife or parent suffering from Alzheimer’s disease differs essentially from parting from a loved one with a wasting disease. Not only does the process last over a period of many years and is there a never ceasing accumulation of losses. The person from whom we are parting remains physically present. The outward appearance of the patient usually only changes at a late stage of the illness. But the person with whom we were familiar and whom we love is constantly changing and gradually disappears. This is most confusing and distressing. The feeling can to some extent be compared with what one feels in the one-sided breaking off of a long-standing relationship: outwardly the beloved or the friend remains the same person, but the abandoned partner has the feeling that he or she has completely changed. It is not the person he used to love any more. But the memory of the beloved, as the other had known and loved him, lingers on for a long time. The patient himself/herself The illness compels the patient to take leave of his familiar world and to part from himself. First of all he has to take leave of the future with all its expectations, which he is soon unable to take stock of. He has to take leave of his interests, of his own household and the management of his finances, of the place which he has hitherto occupied in society, of his independence. At the onset the patient’s vocabulary is still large enough to enable him to express his feelings and experiences more or less adequately. He starts to

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talk about the past more frequently, almost as though he knows that his memories of the past will shortly escape him. For the partner this period offers the last chance to learn what he wants to know about the patient’s past. A patient’s daughter said: “I let mother talk about the past as much as possible, even though it’s sometimes rather confused. I want to know as much as possible about all the things she has experienced. I let her sing songs and verses from earlier on, this is the last chance, otherwise it’s lost for good. Then, when she can’t remember any longer, I can sing them with her. Then she’ll hear something familiar. I also want to tell her about my own feelings and let her know how much she means to me. I know that before long I shan’t be able to talk to her any more.” The patient now has to take leave of his memories, of the whole of his past, of the people and things he was fond of and of all that linked him with the world. He now also has to take leave of his means of verbal communication and of his familiar and secure environment. It is as though he has become homeless in his own home. When he is confronted with his own deterioration, he cannot possibly love himself and therefore he cannot love the other person, his partner either. However, the other person can restore his dignity to him, simply by accepting him as he is and not confronting him with his failing powers. Only then is it possible for the patient to feel and exhibit affection for him. It quite often happens during this period that Alzheimer patients lose their reserve towards strangers, if the latter take an interest in them. The patient will then sometimes exhibit an almost childlike lack of inhibition. For the partner or caregiver, who exerts himself to such an extent and does his very best, it can be painful if the patient shows fondness and affection towards a stranger and not towards the person who does the most for him. This can seem like ‘ingratitude’ on the part of the patient. In this period, in which the patient is gradually losing his past, it can also happen that he is once more pursued and menaced by events from the past. Traumatic experiences from earlier on have sometimes been consciously or unconsciously repressed, because they were extremely painful and because the person could not cope with them either intellectually or emotionally at that particular time. Nevertheless these experiences have left a deep and lasting impression. They only appeared to have been erased. During the course of the dementia process these experiences may resurface with all the emotional pain and fear, by which they were originally accompanied. The patient then has to go through them again for the second time in his life, again alone and again under circumstances in which he is no longer capable of handling the experience rationally. In the process of expropriation these remaining remembrances obtrude themselves upon him. Reliving these distorted remembrances can sometimes also lead to terrifying obsessions and hallucinations. A patient, of whom it was known that she had been sexually abused as a child and had never talked about it, was obsessed by the idea that wherever she went there were men who came after her with evil intentions. A demented patient, who had as a child spent the war years in a concentation camp, experienced vivid hallucinations during which she begged the brutal camp guards not to harm her. It is most important that the partner or caregiver is aware of the patient’s past history, so that he can help the patient to part with this painful part of his life. In a later stage the patient also has to take leave of his own body, which he no longer has under control and which seems strange to him. His senses desert him or deceive him. The more the disease forces him to

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loosen his grip on the world, the more he seems physically to cling literally to the environment. If in the midst of this chaos someone takes his hand and he hears a familiar voice, that gives him a momentary feeling of safety again. Both the partner and the patient now have to live with strangers, but the partner can at least live on his memories of the patient as he used to be. The process of parting has now almost been completed. The illness has lasted for many years. The patient becomes passive and apathetic and exhibits very few reactions. The partner can no longer converse with him. Usually he answers if he hears his (given) name. Sometimes a smile appears on his face if he is addressed by his partner, children or grandchildren. The patient sometimes still becomes agitated during the daily physical care. Even now sudden and unexpected spontaneous utterances may still occur, which show that the capacity for emotional experience has not yet been totally lost. A seriously demented woman, who could occasionally still say a few words, could no longer walk and was permanently bed bound with contractures of both arms and legs, shrieked and cursed during the washing and changing activities, which were painful for her. She was therefore treated with neuroleptics. When this severely demented woman saw someone being given a sound thrashing on the television in her room, she called out: “No, no, don’t do it!” and started to cry. In the final stage of the illness the patient is no longer capable of directing his attention to his immediate environment for any length of time. Only if someone takes notice of him, does the world briefly come to life. At such moments a human face looms up in front of him and a human voice penetrates to him through the thick mist of oblivion into which he has faded. The partner of the patient For the partner the process of parting also follows certain lines. The partner now has to manage without the intelligent, creative and lively companion, who begins to lose all initiative and interest and steadily becomes less of a companion. Initially the partner often plays down the gradually increasing forgetfulness, accompanied by difficulty in finding the words to carry on a conversation, the difficulties in organizing the household or dealing with financial affairs, the withdrawal from company and the increasing irritability. This is the partner’s way of protecting himself for the time being against the all too painful truth, which he cannot yet cope with and the consequences of which he cannot survey. The partner sometimes tries to conceal the patient’s shortcomings as well as possible from the outside world, even including their own children. Sometimes the partner resolutely refuses to accept suggestions of worried children or friends to talk to a doctor and firmly rejects all offers of help. The partner calls on the patient not to let himself go in this way. He reproaches him with being absent-minded and assuming a pose and complains that the patient doesn’t lift a finger to help or that he has become so tiresome. In the company of other people the partner sometimes speaks for the patient in advance, which the latter naturally experiences as domineering. This inevitably leads to friction between the two. Sometimes a partner will doggedly continue to deny that anything is the matter, even to a doctor who has diagnosed Alzheimer’s disease after a thorough examination. Fortunately such cases are an exception.

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Continuing to deny something, which is becoming increasingly evident to others, soon leads to the isolation of the partner himself. Moreover, the strategy of denial is doomed to failure on account of the dementia symptoms, which are steadily becoming more serious. The partner is overwhelmed by feelings of powerlessness and revolt against what he experiences as inflicted injustice. These feelings seek an outlet, a scapegoat has to be found. Sometimes it’s their own children, sometimes the doctor, sometimes the resentment is directed against friends or acquaintances, who fail to show up any more. It is more serious if these feelings of anger and resentment are directed against the patient. The extremely unstable emotional balance of the patient and his inability to express himself adequately then lead to outbursts of rage and agression or to fits of crying. At a still later stage the patient also loses his characteristic outward features for the partner, children, and friends who know him well. The body itself becomes invested with something impersonal, something robot-like. All variety in the patient’s manner of expression is lost and is replaced by uncharacteristic, stereotype behavior and a vapid facial expression. The spouse, daughter, son or friend has increasing difficulty in recognizing his life partner, parent or old friend in this person. They often experience the patient’s emotions as totally strange and incomprehensible. If the partner does accept the diagnosis of the doctor, then a following problem awaits him. To what extent must the patient be informed of the diagnosis and when? After all, one of the first problems is the certainty about the diagnosis. The first symptoms of loss of memory are often insufficient for the diagnosis to be established: time will tell. However, when gradually increasing mental regression becomes apparent, without there being any clearly demonstrable cause, such as depression or a somatic illness, then the diagnosis can be made with a fair degree of certainty. The patient suffering from the beginnings of dementia does not usually have any insight into the ultimate consequences of the diagnosis. Nor does he ask about it. He can no longer conjure up a clear picture of something so far in the future. He does, however, realize that there is something the matter with his mind or ‘in his head’. He will sometimes ask the doctor: “I’m not going mad, am I?” Most patients are less scared by the name ‘Alzheimer’s disease’ than the members of their family They now hear that there is an explanation for what they are experiencing: that strange, vague feeling in their head has a name. Inspite of his dementia the patient sometimes has a more realistic attitude than his partner, son or daughter, who make scrupulous efforts to conceal the diagnosis from the patient. A shroud of secrecy is often created unnecessarily, which can lead to the patient becoming suspicous of the intentions of his partner or children. This also gives rise to an affected attitude of feigned cheerfulness and paternalism in the partner, which only makes the already difficult situation even more complicated. This assumed lightheartedness, at the same time accompanied by an air of secrecy, does not escape the patient’s notice. If the partner persists in denying the existence of the illness, both to the patient and to himself, that causes more damage than any other attitude and can have catastrophic consequences for both of them. This approach leads to powerlessness and the rejection of the so badly needed outside help and ultimately to the complete isolation and disorganization of the partner-caregiver relation. As a rule it does no harm to mention the diagnosis openly in the presence of the patient.

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It is a different matter when his disturbing behavior is discussed in front of the patient. In such a situation he feels that he is being criticized in public, he experiences it as a public accusation. He is being exposed by his own family in front of third parties. He is powerless to do anything about it. This gives rise to a situation of great inequality, in which the patient feels deeply hurt and utterly powerless. Because it is evidently assumed by his partner, child or other caregiver that he has nothing sensible to say, he is, as it were, regarded as a minor. Disregarding the patient as an adult person can never have a favourable influence on his relationship with his caregiver. The patient may indeed forget exactly what has been said, but the negative emotions which have been generated continue to make themselves felt and may later find expression in the form of agression, depression and a feeling of being deceived. Phases in the process of parting The diagnosis ‘Alzheimer’s disease’ usually gives rise to a crisis situation in the patient’s family. The process of parting, which has to be gone through by the partner and children, can be compared with a mourning process and takes place in the same phases. The first phase of consternation, denial and suppression is succeeded by a phase of anger: “Why should this happen to me” Accusations are made against members of the family or professional caregivers. Sometimes the anger is also directed against the patient: “Why are you doing this to me?” The agressive feelings of the partner lead in turn to agression and depression in the patient. This gives rise to a vicious circle, from which the partner can usually only escape with outside help. If the partner is unable to round off this anger phase, this may ultimately lead to guilt feelings, whereby the partner’s agression is now turned against himself. At the same time the increasing isolation, the loss of communications with the outside world, the steady deterioration of the patient inspite of all the good care finally leads to serious feelings of depression in the partner. If this happens, professional help in the short term is a vital necessity in order to maintain the mental, physical and social health of the partner-caregiver. If, in these unfavourable circumstances, the patient has to be moved to a nursing home, it is much more difficult for the partner to take a well-considered decision. The feeling of having failed can bring latent feelings of guilt to the surface, which can also continue to feed the depression. In this phase of parting there is a very real possibility of a ‘burnt-out syndrome’: the combination of stress resulting from ever greater demands on mental, physical and social resilience, the continual demands made by, and the disturbed behavior of the patient, and the isolation and lack of help and understanding from members of the family and from the rest of the outside world—all this becomes too much. The partner-caregiver collapses under the burden. He becomes extremely irritable, cannot stand anything more from the patient, loses all interest in him and often has physical complaints himself. The occurrence of a depression or a burnt-out syndrome in the partner causes an untenable situation, both for himself and for the patient. It is a clear indication that the partner can no longer cope with his task. Professional help and advice is necessary for the partner and admittance to a nursing home for the patient may become inevitable. If the partner can get through this anger phase, then the energy generated by his emotions can be invested in a more positive attitude. The partner seizes every opportunity

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to improve the patient’s situation. He does not give up. He continues to hope that some means will be found to fight the illness. He takes an active part in discussion groups and wants to help others with his own experience. Professional help It is clear from what has been said above, that also for the partner-caregiver there is a very real danger of breaking his connections with the outside world. The earlier attention is called to increasing loss of memory or continuing deviant behavior in the disturbed partner, the less the chance that the healthy partner will become socially isolated. Early recognition by the healthy partner leads to visiting the doctor or memory clinic in time. As soon as the diagnosis has been made, the partner-caregiver can get professional advice. He learns what he can expect with regard to the course of the illness. He gains insight into the problems which may occur at a given moment and what measures can be taken, such as getting professional help in time at home or getting the patient admitted to a nursing home when necessary. If the partner-caregiver is aware from the onset of what may be expected of him if he wants to care for the patient at home, then he will be better prepared to decide whether he can cope with it. The partner can also take part in a family support discussion group, in which relatives of patients who are faced with similar situations can discuss their difficulties under professional guidance. He then realises that he need not stand alone in performing his difficult task. If one of the patient’s children has taken on the task of looking after him, he can discuss the problems arising in the caregiving with the other children and involve them in the process. Full support from members of the family and unanimity on the policy to be followed is essential if the caregiver is to be able to accomplish his task properly. Sometimes family counselling is necessary to settle differences between the members. Professional bodies, such as the local chapters of the Alzheimer Foundation, can provide a great deal of help and advice. Thus the partner-caregiver need not feel completely powerless. It must at all times be avoided that the partner-caregiver is inundated by the chaos, which the patient is experiencing. He must not become housebound. He must be helped to structurize his own life. Otherwise he cannot structurize the patient’s life. Caring for a patient with Alzheimer’s disease is a task which nobody can carry out alone. The availability of professional help is of essential importance for the mental, physical and social wellbeing of the partner-caregiver. He must not and cannot be left to himself in his literally heroic task. He needs all possible active help, sympathy and encouragement from society to help him perform it. The latter point cannot be emphasized enough. The way in which the partner copes with the process of parting depends to a considerable extent on the quality of the relationship before the outbreak of the illness. How much had the partners to offer each other, how much mutual warmth and respect did they have for each other? If the illness begins early, it often happens in a period when the children have just left home and retirement is approaching. Both spouses are thinking about the years ahead in which they will be more together and have more time for each other. These expectations are then cruelly shattered. If the illness begins later in life, after the age of sixty five, a greater

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degree of intimacy has often already developed between two people who are growing old together. If the relationship between the partners has never been very good, or has been faltering, then the healthy partner sometimes takes the responsibility for the caregiving from a feeling of obligation and guilt: “I can’t leave him alone now, can I?” Such a situation may not leave much room for affection. Some examples The way in which the process of parting comes to an end is connected with the particular circumstances of each individual situation and the individual characteristics of the partner. A few examples will serve to illustrate this. An almost ninety-year-old woman with Alzheimer’s disease lived with her husband in the house where she had grown up as a child and had always continued to live. To the outside world her life appeared to have been comparatively uncomplicated. She had no children, but never complained about it. She had always been idolized by her husband, on whom she relied entirely and to whom she devoted herself. The only difficult years of her life had been during World War II, when she had been temporarily parted from her husband. At about the time of her eightieth birthday the first symptoms of dementia became evident. Her husband continued to look after her lovingly and devotedly at home right up to the time of her death. They would often sit for long periods hand in hand with a contented smile on their faces. During her illness she exhibited practically no drastic behavioral disturbances. For her husband the very fact of her presence was sufficient. After she passed peacefully away, her husband was dead within a year. In another somewhat comparable situation a demented man was admitted to a nursing home during the last stage of the illness, after his wife, who had looked after him, had to go into hospital for an operation. After she unexpectedly died in hospital, her husband also died a few days later. If Alzheimer’s disease affects someone who is still relatively young however, it can be quite a different situation. A fifty eight-year-old man had married for the second time. His wife was an active, intelligent younger woman, who had her own business. She had married him because she admired his great intelligence. He was well-read, witty and had a gentle character, qualities which she had missed in her previous husband. They both hoped to enjoy life together for many years and had great expectations of the future. After the man began to exhibit the first, but clear symptoms of dementia, his wife got very worried and upset. When the doctor confirmed her suspicions and made a diagnosis of Alzheimer’s disease, her reaction was first one of denial, followed by strong feelings of disappointment and anger. There was a scarcely concealed reproach to her husband for doing this to her and altering the whole perspective of the future. She could not bring herself to care for him at home and had her husband admitted to a nursing home as quickly as possible, where he died just over a year later. These are examples of extremes: in the first case almost total acceptance, in the latter case total rejection. Between total acceptance and total rejection a great variety of reactions may occur. Nobody is entitled to pass judgment on a partner’s reaction, whatever that may be.

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The wife of a still relatively young Alzheimer patient, who was already in an advanced stage of dementia, said to her husband in the presence of the doctor: “We have a lot of fun together, don’t we? We find lots to laugh about.” They had both always had a very good sense of humor and had not lost it. Both laughed through their tears. This woman is very active in the Alzheimer Association. She arouses a great deal of admiration for her attitude and she is able to give advice and help to her companions in adversity. When the process of parting approaches completion, the partner reaches the acceptance phase. Feelings of uncertainty, fear, shame or guilt slowly give way to a feeling of resignation, which is derived from realizing that the loss of ones partner for life is irrevocable. Sometimes partners are unable to complete a particular phase or revert to a previous phase and need professional help on a more continuous basis. The patient also experiences a process of parting. He cannot, however, reach the final phase of acceptance, because he has less and less insight into his situation. Thus the process of parting is more chaotic for the patient, whose emotions are more unstable and receive increasingly little guidance from the cognitive functions. Strong emotions of powerlessness, anger and distress alternate with one another during periods when he is confronted with his loss. Here too the healthy partner has to guide the patient through the chaos and structurize his process of parting. The most important thing he can do is to let the patient know: I’m staying with you, whatever happens, you are not alone, you are always my partner. Many patients become tranquil and seem resigned in the late phase of the illness. Little is left to fight with, little is left to fight for. Those who regularly visit a nursing home or the homes of demented patients and their families know that even the most demented person remains receptive to signs of affection. The patient’s smile is his last possibility to express this and it is retained for a long time. His lips are still able to respond to a kiss. The demented person will keep hold of the visitors hand, if the visitor puts his hand into that of the patient. We may call this ‘automatic behavior’ or ‘reflex behavior’, which remains or reappears when the tissue of the brain, in which a whole world was contained, has been unraveled by the illness. Together with those reflexes which serve for feeding and with which these behaviors are closely linked, this ‘innate reflex behavior’ is the first, and in Alzheimer’s disease, the last human expression of life. Such is the importance of affection, that the responsiveness to it and the means of expressing it remain intact to the very last, even in the person who is severely demented. That connection with fellow human beings remains unbroken virtually to the very end.

INDEX acetylcholine 4.5 actions, insight into 5.1 reflex 3.9 activities 5.1 daily routine 2.1 nursing 3.8 adjust 2.4 adjusted 5.1 adjustment 5.6 advanced age, normal symptoms of 1.3 affection 2.4 6.0 agression 3.9 6.0 agressive 3.6 amygdala 3.2 amyloid 2.1 anxiety, breaking down 3.8 experience of 3.8 feelings of 2.1 authority, abuse of 3.9 awareness of himself 4.11 basal ganglia 4.4 bathing 3.9 5.3 behavior, confused 3.7 disturbing 3.4 habitual 3.1 behavioral disturbances 3.2 behavioral regression 3.2, 3.6 beta-amyloid 2.2 black substance, see substantia nigra bladder problems 3.7 body scheme 4.8, 4.11, 5.10 brain 1.3 development of 3.1 limbic 4.4 little 4.5, 4.7 metabolic activity of 2.2 brain stem 2.2 ‘burnt-out’ syndrome 6.0 care and nursing 2.4 definition 2.4

Index

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caregiver, behavior of 3.3 caregiving 5.0 central nervous system 2.2 cerebellar system 4.5 cerebellum see little brain conclusion, draw a 3.7 confabulation 3.6 connections, make 3.7 contact, 2.4, 3.8, 4.8 loss of 3.4 continent 2.3 contractures 2.3, 4.11 5.5, 6.0 conversation 3.8 crying, fits of 6.0 day & night rhythm 3.7, 5.10 decorum 3.5 decorum, 3.9 re-establishment & maintenance of loss of 3.2, 3.5 decubitus 2.3, 4.11 defect 1.3 defense mechanism 3.2, 3.6 degeneration, neurofibrillar 2.1 delirium 1.6, 2.3 delusions 3.7 dementia 1.1 definition 1.4 development of the notion 1.4 misconceptions 1.2 multi-infarct 1.6 pre-senile 2.1 primary degenerative 1.6 pseudo- 1.5 senile 2.1 syndrome 1.6 vascular 4.10 denial 3.7 deny 6.0 depression 1.5, 2.2, 3.7, 6.0 chronic 1.5 digestive system 1.3 disease 1.3 disorientation, in space 3.7 in time 3.7 disoriented, with regard to space, time and person 3.9 distrustful 3.7 dopamine 4.5 dressing 3.9, 5.1 emotions 1.6, 3.2, 6.0 emotional life 3.1

Index

emotional reactions 3.7 encouragement 5.1 environment, perception of 3.7 extrapyramidal system 4.4 phenomena 4.5 fall on the head 1.6 falling 1.1 fear 3.7 financial affairs 5.1 fragmented experiences 4.11 freedom, deprivation of 3.6, 3.8 frighten 3.2 frightening 3.7 functions, expressive 3.1 loss of 2.3 maintenance of 5.3, 5.4 gait 4.11 grasp 4.11 gratitude 1.2 guiding the patient 5.9 guiding—to a goal 3.8 guilt feelings 3.3 hallucination 2.2, 3.2, 3.7, 6.0 hematoma, subdural 1.6 hippocampus 2.2, 3.2 3.2, 4.7 hypothalamus 3.2 illusions 3.7 immobility 5.4 immobilize 3.6 imperceptible beginning 4.11 impulses, transmission of 2.2 incontinence 2.3 incontinent 4.11, 5.10 independent, keeping the patient 5.3 initiative 2.1, 3.1, 3.2 4.11, 5.3, 5.6 loss of 5.8 intellect 1.6, 3.1 functions of 1.4 intellectual faculties 3.1 interaction—through word and gesture 3.8 intrusion 3.8 involution 1.3, 2.1, 4.8 jealousy 3.7 kidneys 1.3

105

Index

life history 3.9, 5.6 life story 1.3 LIMIT scheme 5.7 lobes, frontal 2.2, 3.2 occipital 2.2, 3.2 parietal 2.2 , 3.2 temporal 2.2, 3.2 locomotor plan 4.4 longitudinal research foreword, 6.0 memory 3.1, 3.7 mental changes 1.3 mental processes 4.8 microscopic examination 1.4 motivation 3.1, 3.2, 5.6 motor functions 4.4 motor system 4.1, 4.11 move, urge to 3.9 movement 4.1, 4.4 automated 4.6 automatic 4.6 coarse & fine finger 4.7 fine finger 4.8 freedom of 3.9 5.6 instinctive 4.6 order of 4.6 program of 4.11 reflex 4.6, 4.8 movement, urge 3.6 voluntary 4.6 muscles 1.3, 4.1 power 5.1 rigidity of 4.11 stiffening of 2.1, 3.8 muscular tension 2.1, 2.3, 5.1 negativism 3.6 neurotransmitters 1.6, 2.2, 4.5 nursing care 2.4 observation 2.4, 5.2 observe 3.9 observing 3.7 ordered about 3.7 orientation 3.2 overmedication 2.3 Parkinson’s disease 4.5, 4.10 past and present 3.4

106

Index

past history 6.0 perception 3.7 spatial 3.2 peripheral nervous system 2.2 persistence 3.6 physical changes 1.3 plan of action 5.0 execution 5.0 powerlessness 3.9, 6.0 predictable course 6.0 previous history 5.2 professional help 6.0 pyramidal phenomena 4.5 pyramidal system 4.4 rationalization 3.6 reality 3.4, 3.7 receptive powers 3.1 reflection 3.7 report 3.9 resistance, putting up 3.9, 3.10 rest and regularity 3.9 retirement 1.1 ‘rust out’, better to wear out than to 1.1 second childhood 3.6 sedate 3.9 sedated 3.6 sedation 5.4 senile plaques 2.1 senium 2.1 sense, make 3.7 sensorimotor integration 4.5, 4.6 sensory information 4.2 sexuality 3.5 somatization 3.6 space, notion of 4.11 speech 4.7, 4.11 stability 3.2 standing and walking 4.8 strap(ping) down 2.3, 3.6, 3.9, 5.6 stress, great 3.3 substantia nigra 4.4, 4.5 ‘sundowning syndrome’ 3.7 suspicious 2.1, 3.7 take hold of 4.11 thalamus 4.4 therapy 5.5 thinking 4.11 thought 3.1

107

Index

time, concept of 5.10 how to spend 4.11 notion of 4.11 toilet, going to the 4.11 training 5.5 traumatic experiences 5.6, 6.0 urinate, urge to 3.7 walk and stand, loss of ability to 3.10 walking 4.11 senile disorder 4.10 wandering 3.6 weeping, fits of 3.7 working 4.11

108

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