The Simplicity of Dementia: A Guide for Family and Carers

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The Simplicity of Dementia
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The Simplicity of Dementia
A Guide for Family and Carers

Huub Buijssen

Jessica Kingsley Publishers

London and Philadelphia
 All rights reserved. No part of this publication may be reproduced in any material form
(including photocopying or storing it in any medium by electronic means and whether or not
transiently or incidentally to some other use of this publication) without the written
permission of the copyright owner except in accordance with the provisions of the Copyright,
Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright
Licensing Agency Ltd, 90 Tottenham Court Road, London, England W1T 4LP. Applications
for the copyright owner’s written permission to reproduce any part of this publication should
be addressed to the publisher.
Warning: The doing of an unauthorised act in relation to a copyright work may result in both
a civil claim for damages and criminal prosecution.

The right of Huub Buijssen to be identified as author of this work has been asserted by him in
accordance with the Copyright, Designs and Patents Act 1988.

First published in Dutch in 1999 by De Stiel, Nijmegen and Tred Uitgeverij, Tilburg as De
heldere eenvoud van dementie: Een gids voor dee familie.

First published in English in 2005

by Jessica Kingsley Publishers
116 Pentonville Road
London N1 9JB, UK
and
400 Market Street, Suite 400
Philadelphia, PA 19106, USA
www.jkp.com

Copyright © Huub Buijssen 2005

Second impression 2005

Library of Congress Cataloging in Publication Data

Buijssen, H. P. J.
[Heldere eenvoud van dementie. English]
The simplicity of dementia : a guide for family and carers / Huub Buijssen.
p. cm.
Includes bibliographical references and index.
ISBN-13: 978-1-84310-321-9 (pbk.)
ISBN-10: 1-84310-321-4 (pbk.)
1. Dementia. 2. Caregivers. 3. Dementia--Patients--Care. 4. Dementia--Patients--Family
relationships. I. Title.
RC521.B856 2005
616.8'3--dc22
2004027024

British Library Cataloguing in Publication Data

A CIP catalogue record for this book is available from the British Library

ISBN-13: 978 1 84310 321 9

ISBN-10: 1 84310 321 4
ISBN pdf eBook: 1 84642 096 2

Printed and Bound in Great Britain by

Athenaeum Press, Gateshead, Tyne and Wear
 For my mother,
who gave her all to keep Father at home
for as long as was conceivably possible
The author would like to thank the publishers and authors who have kindly given permission to
reproduce the following material:

Quotes on pp.13, 57, 144, 161–2 and 168–9 from Ze is de vioolmuziek vergeten (1995) by Marjan
van den Berg, published by Van Reemst. Used with permission from the author.
Quotes on pp.18, 42, 58 and 65 from We komen niet meer waar we geweest zijn (1993) by Ingrid H.
van Delft, published by Anthos. Used with permission from the author.
Quotes on pp.26–7 and 93–4 from Remind me who I am again (1998) by Linda Grant, published
by Granta Books. Used with permission from A.P. Watt Ltd on behalf of Linda Grant.
Quote on p.32 from Memory (1987) by Margaret Mahy, published by Collins Flamingo. Used
with permission from HarperCollins Publishers Ltd and Watson Little.
Quote on p.35 from De moeder van Nicolien (1999) by J.J. Voskuil, published by G.A. van
Oorschot. Used with permission from the publisher.
Quotes on pp.38–9, 67–8, 78–9, 81 and 147–8 from Dubbel verlies (1997) by Sophie Prins,
published by Kosmos. Used with permission from the publisher.
Quotes on pp.44, 45, 71 and 163 from De vader, de moeder & de tijd (1999) by Marijke Hilhorst,
published by Meulenhoff. Used with permission from the author.
Quote on pp.46–7 from Iris and her friends (2000) by John Bayley, published by W.W. Norton &
Company. Used with permission from W.W. Norton & Company and Gerald Duckworth.
Quote on p.48 from Dement worden (1993) by Rien Verdult, published by Hbuitgevers. Used with
permission from the publisher.
Quote on pp.51–2 from Een jaar in scherven (1987) by Koos van Zomeren, published by
Arbeiderspers. Used with permission from the publisher.
Quote on pp.53–4 from The man with a shattered world (1992) by A.R. Luria, translated by Lynn
Solotoroff, published by Harvard University Press. Used with permission from the publisher.
Quote on p.54 from Love in the time of cholera (1988) by Gabriel Marquez, published by Alfred A.
Knopf, a division of Random House New York. Used with permission from the publisher.
Quote on pp.59–60 from De man van de Middenweg (2001) by Koos van Zomeren, published by
Arbeiderspers. Used with permission from the publisher.
Quotes on pp.63 and 69–70 from Scar Tissue (1993) by Michael Ignatieff, published by Chattoo
& Windus. Used with permission from the Random House Group Ltd.
Quotes on pp.75–6 and 138 from the article Thuis is ergens anders en nergens meer te vinden (1990)
by Ursula den Tex, published in Vrij Nederland. Used with permission from the author.
Quote on p.100 from Out of mind (1988) by J. Bernlef, published by Faber and Faber. Used with
permission from the author.
Quote on pp.113–4 from Elegy for Iris (1999) by John Bayley, published by St Martin's Press.
Used with permission from St Martin's Press and Gerald Duckworth.
Quote on p.122 from in ‘Er groeit een nieuwe persoonlijkheid.’ In Het dementiecafé (2002) edited
by Annie van Keymeulen, published by EPO. Used with permission from the publisher.
Quotes on pp.124–5, 144 and 149–50 from Carien. Het drama van dementie (1993) by C. Vergoed,
published by Uniepers. Used with permission from the daughters of C. Vergoed.
Quotes on pp.133 and 134–5 from Het verhaal achter de feiten (1996) by Mia Duijnstee, published
by Hbuitgevers. Used with permission from the publisher.
Quote on p.148 from Meegesleurd in de hel van een Alzheimerpatiënt (1996) by Willy Wielek,
published by Opzij. Used with permission from the publisher.
Quote on pp.150–151 from the article Alles is goed gekomen. (1994) by Henk Ruigrok, published
in the Nieuwe Revu. Used with permission from the author.
Quote on pp.159–60 from The story of my father (2003) by Sue Miller published by Alfred A.
Knopf, a division of Random House New York. Used with permission from the publisher.
 Contents
PREFACE 9

1 What is dementia? 13
Introduction 13
Dementia in many forms 15
Prevalence 19
Causes 19

2 The simple logic behind dementia 21

Introduction 21
How we remember 21
The first law of dementia:disturbed encoding 25
The second law of dementia:the roll-back memory 35

3 The experience of dementia 51

Introduction 51
How can we know how someone is experiencing dementia? 52
The preliminary phase 54
The need-for-supervision phase 55
The need-for-care phase 63
The need-for-nursing-care phase 71

4 Communication 75
Introduction 75
Communication in the three phases of dementia 77
Basic attitude 79
Verbal communication 80
Non-verbal communication 84
Insight into the past 86
Focus on feelings 87
When talking is no longer possible 88
5 Mood problems: Aggression, depressiveness
and suspiciousness 91
Introduction 91
Aggression 91
Depressiveness 100
Suspiciousness 106

6 Behaviour problems: Clinging behaviour,

wandering and nocturnal restlessness 113
Introduction 113
Clinging behaviour:‘He follows me around like a shadow’ 113
Wandering 117
Nocturnal restlessness 124

7 Management guidelines and activities 131

Introduction 131
Management guidelines 131
Activities 139

8 The family: The hidden victims 143

Introduction 143
Common problems 143
Self-care:the basis of caring for a partner or relative 150

9 Feelings of guilt 157

Introduction 157
Guilt after hearing the diagnosis 157
It is never enough 159
Admission to a nursing home 161
The psychological meaning 166
Past guilt – paying off the debt 167
Handling feelings of guilt 167

REFERENCES 171
SUBJECT INDEX 173
AUTHOR INDEX 176
 Preface

When my father began to show the first signs of impending

dementia some 25 years ago, my mother and my brothers and
sisters – and I too! – expected that I would be able to clarify for
them exactly what was happening to him, and how best we
could all deal with it. I had just completed my psycho-
gerontology studies (and was therefore an ‘expert’ on the
subject of the psychology of ageing). Despite the fact that I had
learned a lot about dementia during the course of my training,
it was not at all easy to satisfy the expectations of my mother
and my siblings. The illness remained extremely complex, both
for my family and for me. This is not only because of the huge
number of symptoms such a sickness can manifest – and they
can also differ from person to person – but also because the
features of the illness change as the sickness progresses. And
because the features were devoid of any logic, it was difficult to
penetrate its depths, as it were, and to explain why my father’s
behaviour was different from what it had been in the past.
Slowly but surely, however, I began to discover that there is
a simple logic in the signs and symptoms of the disease. It
became clear to me that two ‘dementia laws’, in combination
with some basic knowledge of psychology, are sufficient to
understand the many deviant behaviour patterns (the dementia
symptoms) of this illness. When I explained these two
dementia laws to my mother and my brothers and sisters, they
were able to understand my father better, and were able to
interact with him more effectively.

9
10 The Simplicity of Dementia

In the course of many years, I have had the privilege of

giving many talks on dementia, for both caregivers in the field
and relatives of people with dementia. I have talked about
dementia on the basis of the two dementia laws, and after many
such lectures I was often asked, by relatives in particular, if my
story was available in print. They usually added that they
wanted to pass on the information to another relative who had
not been able to attend the lecture: ‘Then she will also know
exactly what is going on, and how to deal with it.’ I had to keep
on telling them, however, that my story had not yet been
published in book form, and I dared not make any promises
that it would one day see the light of day in print. And, at first
glance, a fairly simple explanation within the context of a talk
was one thing, but turning it into a book was something
entirely different.
Several papers, by leading experts in the field, have
recently appeared in international scientific geriatrics journals
that support my simple explanation. This has helped me to step
over the threshold of reluctance, and get down at last to
producing the book I have been asked to write.
The dementia laws give us a better understanding of what
dementia does to its victim, whilst relatives, on the other hand,
often want to know what the victim does with the illness; in
other words, how does he or she perceive and experience it? I
will endeavour to provide an answer to this question in this
book.
Dementia creates problems at practically every level of life.
It is well-nigh impossible to describe all the problems in great
deal and keep the book compact at the same time. I have
decided, therefore, to cover ‘only’ those problems which
research has shown present the greatest difficulties for those
closest to the person with dementia: communication, mood
problems (aggression, depressiveness and suspiciousness), and
 Preface 11

behaviour problems (clinging behaviour, wandering and

nocturnal restlessness).
When one talks with relatives of people with dementia
about their worries and their problems, sooner or later the
question of guilt will rise to the surface. ‘Am I doing it
properly?’, ‘Am I doing enough?’, ‘If only I had not…’ In a
book written with family members in particular in mind, the
guilt issue cannot be ignored, and this will explain why I have
devoted a separate chapter to it.
I have tried to bring the book ‘to life’ by including a
number of quotes, most of which have been taken from
(semi)biographical books and interviews. Others (that is, those
with no author references) have been drawn from private or
work experiences.
 1

What is dementia?

Introduction
Her fingers, so wrinkled, the colour of marble, rearrange
the advertisement folders lying on the low table.
‘What a shame that Pa has just left. It would have been
so nice… I don’t know where he is, I haven’t seen him all
day!’
She looks at me with an uncertain expression on her
face, grey-blue eyes that look but do not see.
‘Pa is making a cup of tea, Mum,’ I say as I rest my
hand on hers. ‘Really? Why didn’t he say something
then? I haven’t seen anything of him at all.’
‘Oh, Pa, there you are – that’s good.’
She is clearly very pleased to see him. Pa puts the tray
with the cups, tea and sugar on the side table. He looks
tired.
‘Here you are dear, here’s the tea,’ he says.
She strokes his knee.
‘I’m always so pleased when he’s back,’ she says
almost apologetically, and then proceeds to put sugar in
all the cups.
(Van den Berg 1995)

13
14 The Simplicity of Dementia

The term ‘dementia’ comes from the Latin and literally means
‘mind gone’: the first syllable ‘de’ meaning ‘gone’, and ‘mens’
being the Latin word for ‘mind’. The person concerned goes
into a steady decline, and the progress of the disease is so
destructive that in the last phase the patient bears hardly any
resemblance to the person he or she was at the outset. During
the (long) first phase, the dementia, as such, is scarcely
apparent; the eyes are bright and open, the mind is clear and
the patient walks and moves around as he has always done.
In the final phase of the disorder, however, he becomes
dependent on others for all his needs, and he has forgotten
everything he has ever learned. A person with severe dementia
comes to the end of his life just as he entered it – a helpless
baby. At that stage, he is only receptive to the atmosphere
around him, and to the satisfaction of his most primary human
needs.
It was thought for a long time that people with dementia
were ‘mad’ and suffering from some kind of mental illness. It
has become apparent only fairly recently, however, that this
is a misconception, and that dementia is caused by brain
dysfunction. The nerve cells in the brain are diseased. In the
case of Alzheimer’s disease, the nerve cells shrink or wither
away – in a kind of ‘autumn of the mind’. The brain’s control
room is not able to function as it should. In the early phase of
the disease, sufferers are able to behave fairly normally, because
most of the nerve cells are still in good working order. The
brain also has amazing reserves at its disposal: when nerve cells
fail, others take over their tasks, either partly or in whole, and
can continue to do so for a very long time…at least until a
critical point has been reached, and there are no more ‘reserve
players waiting on the bench’. The more it affects more parts of
the brain, the more striking the changes in the patient’s
behaviour.
 What is dementia? 15

Strictly speaking, a full diagnosis is only possible once a

post-mortem examination has been carried out. So long as the
patient is still alive, there is no reliable method of determining
the nature and degree of the brain tissue damage. Dementia,
therefore, is always a ‘probable’ diagnosis. And sometimes,
even the most experienced pathologists are puzzled by the fact
that some people who have apparently functioned quite
normally for their entire lives are found, during autopsy, to
have the same brain abnormality as that found in people with
dementia. This means that, even after death, it is not possible in
all cases to diagnose Alzheimer’s disease with 100 per cent
certainty.
The disease begins gradually: silent, like an animal stalking
its night-time prey, it takes hold of its victim, and worsens with
time.

Dementia in many forms

There are many types of dementia, and dementia – like cancer,
rheumatism and respiratory disorders – is a collective term.
The most common form of the illness is Alzheimer’s disease,
which is named after the German neurologist Alois Alzheimer,
who first described it in 1906.
The first conversation Alois Alzheimer had with Auguste
D., the ‘first’ Alzheimer patient, began as follows:

‘What is your name?’

‘Auguste.’
‘Your surname?’
‘Auguste.’
‘What is your husband’s name?’
‘Auguste, I think.’
‘Your husband?’
‘Ah, my husband.’
16 The Simplicity of Dementia

She looks at me as if she has not quite understood the

question.
‘Are you married?’
‘To Auguste.’
‘Mrs D.?’
‘Yes, Auguste D.’
‘How long have you been married?’
She is obviously trying hard to remember.
‘Three weeks.’

Of all people suffering from dementia, roughly 55 per cent

have Alzheimer’s in its purest form. After Alzheimer’s, vascular
dementia is the most common and is responsible for 15 per
cent of all dementia cases. There are other forms of vascular
dementia, the most well-known being the so-called multi-
infarct dementia (MID). As the name suggests, this dementia
arises from the many (in Latin: multi) small brain infarcts that
cause oxygen loss in various parts of the brain which, in its turn,
results in brain tissue erosion.
In roughly 15 per cent of cases, we see a combination of
two or more disorders which lead ultimately to dementia. The
combination of Alzheimer’s and vascular dementia occurs most
frequently. If we add ‘pure Alzheimer dementia’ to the 15 per
cent mentioned above, it means that roughly 70 per cent of all
dementia patients suffer from Alzheimer’s disease.
A long line of relatively rare disorders is responsible for the
remaining 15 per cent. These diseases, including Parkinson’s
disease Pick’s disease, Binswanger disease, Lewy Body disease
and Huntington’s disease, occur – relatively speaking – more
often in younger patients. The same is true of Aids which, in its
last phase, can also cause dementia.
Dementia is a syndrome; that is, a group of symptoms or
features which appear in combination. Memory loss is always
 What is dementia? 17

the essence of the illness, and it means in practice that the

patient’s life pattern undergoes considerable change. As we
have said already, there are many types of dementia. Each
syndrome has its own cause, or causes, and each has its own
process. We will limit ourselves in this chapter to a description
of the two most common forms of dementia: Alzheimer’s
disease and MID.
Both diseases share many similarities, in terms of their
symptoms and consequences. There are, however, several
important differences. Whilst Alzheimer develops very slowly,
MID often begins suddenly with a period of confusion, which
is probably the consequence of a mild stroke. This is followed
by a period of reasonable recovery, the patient’s condition
remaining fairly stable until the onset of the next ‘confusion’
period. Whilst Alzheimer progresses in a way which can be
compared to walking down a slight slope, MID is more
reminiscent of small steps on a descending track – two steps
down, and one upward step back, and so on.
Because MID is caused by the erosion of many small brain
particles, whereby the surrounding area is still able to function
reasonably well, these patients are often far longer aware
of their own deterioration than Alzheimer patients. When
someone with Alzheimer’s disease makes a mistake of some
kind, and this is pointed out to him, his response is often one of
genuine surprise. The recent past is a black hole for him, whilst
a similar incident might ring a few more bells for an MID
patient, who realizes quite quickly, or remembers vaguely, what
he should have known. MID patients are likely to be more
conscious of the effects of their illness for a longer period of
time.
A male MID patient describes his experiences in these
terms:
18 The Simplicity of Dementia

I used to be able to do everything. And now I can’t do

anything. That’s what’s so crazy about all this. Everything
works against me. If I had my way…I would walk
through that wall, get into the car, and go to see my wife.
But I can’t. If I could, I would have done it already! And
that’s what gets me down. I can’t stand it. I cannot cope
without my wife. And here I am [in the nursing home].
That’s all I know. I don’t understand it. Everything is
confused. I don’t know what’s going on any more. And I
can’t remember how it was in the past. There is so much I
would like to know…and I know nothing, that’s the
whole problem. The fact of the matter is: I can’t remember
anything. There is nothing I can do about it, but what I
know this morning, I will know this afternoon…I don’t
know any more. That is horrible. They say to me: ‘go and
get ten kilos of potatoes’ – and a moment later, I’m saying
to myself: what was it I was supposed to get? And then
I’ve lost it. I used to know exactly what I had to do, but
now I don’t.
My brother-in-law was here a while ago. I think to
myself: ‘hey, that’s Gerard’. I was happy to see him, of
course, because we grew up and played together. He says:
‘You ought to be able to remember that, Henk.’ I say: ‘Yes,
I ought to, but I can’t, Gerard.’
I’m not doing anyone any harm, and no one is
harming me, but I lose track of things immediately. How
can I get rid of this illness? – because in my eyes it is an
illness.
But enough of this self-pity. That’s no good. I will
keep on fighting. I’ll just eat a plum, and then at least I’ll
have something to nibble on in my mouth.
(Quoted in Van Delft 1993)
 What is dementia? 19

The fact that people with dementia are spectators of their own
decline over a longer period of time often results in their
developing depression.
Whenever the term ‘dementia’ is used, it usually refers not
so much to MID but to Alzheimer’s disease. Unless otherwise
stated, therefore, the same will be true of the rest of this book.

Prevalence
Dementia is often referred to as the ‘disease of old age’,
although the disorder is occasionally known to occur in people
under the age of 65 years. Between the ages of 45 and 54,
however, only 0.025 per cent of the population suffers from
dementia. The incidence figure is still less than 1 per cent in the
65-year-old age group, although between the ages of 65 and
70 it rises to 2.5 per cent. After that, the percentage doubles
every five years. The illness is thus particularly prevalent
among the very old; 1 in 5 of those aged 85 and over suffers
from dementia. In order to emphasize that dementia is not
always the inevitable consequence of reaching a grand old age,
it is worth formulating the last sentence in more positive terms:
that is, four out of every five octogenarians escape dementia.
Increased life-expectancy has resulted in a sharp rise in the
number of dementia patients in recent years, and the upward
trend is unlikely to end in the foreseeable future. Dementia has
already become one of the top five causes of death in the
Western world, and in consequence is sometimes referred to as
the ‘disease of the century’.

Causes
All kinds of reasons have been put forward through the years
which might explain why dementia occurs. One popular
explanation which reigned for a long time was that the brain
20 The Simplicity of Dementia

had been damaged by a virus. Another explanation is metal

poisoning, aluminium in particular (in drinking water). A third
explanation seeks it in the neurotransmitter acetylcholine, a
chemical substance essential to the working of the brain.
The profusion of explanations makes one thing very clear
indeed, however: the precise cause of dementia is not known.
Despite this, there is no doubt at all that genetic factors play a
role in the development of the disease. Research has already
proven that the (immediate) relatives of people with dementia
are twice as likely as others to develop dementia. The same is
also true for relatives of people with Down’s syndrome – they
too have an increased chance of developing dementia. The fact
that dementia primarily occurs in older people suggests that
ageing also plays a role.
Finally, it is also known that there is a higher risk of
dementia occurring in people who have suffered a severe skull
trauma at some time in their lives, and in those with chronic
high blood pressure. As far as the latter is concerned, increased
blood pressure not only raises the chances of vascular
dementia, but doubles the chances of developing Alzheimer’s
disease as well.
There is no need for immediate panic if we appear to fall
into one or more of the above-mentioned risk categories; the
chances of our not developing dementia are still much higher
than the chances of our being struck down by it.
 2

The simple logic

behind dementia

Introduction
Living with, and caring for, a partner/relative with dementia is
often far from easy. The patient’s behaviour is often very
puzzling for those around him: he constantly asks the same
questions; he can remember nothing about recent events, but is
very lucid about the distant past; he wants to go home when he
is already there; he plays with dolls but feels very insulted if he
is spoken to as a child; he forgets everything but never admits
to being forgetful; and so on. What confuses people around
him most is the unpredictability of his current behaviour.
There is a simple logic in the symptoms of his illness,
nonetheless. Two ‘dementia laws’, in combination with some
degree of simple psychological knowledge, are sufficient for us
to be able to understand the many anomalous aspects of his
behaviour – that is, the dementia symptoms. We will try to
throw some light on this aspect in this chapter.

How we remember
To be able to explain the first of these dementia laws, we need
first of all to say something about how the normal memory

21
22 The Simplicity of Dementia

mechanism works (see Figure 2.1). Scientists have discovered

that, generally speaking, we humans have two kinds of
memory: a short-term and a long-term memory. Everything we
hear, see, taste, smell or feel (the five senses), at any given
moment, enters our short-term memory first. This information
stays in this small anteroom of our upper chamber for no more
than 20 or 30 seconds. Within the space of half a minute,
therefore, we have to make a selection. Important information
receives our attention and the rest we discard. If we want to
increase the retention period, the information will have to be
transferred to our long-term memory chamber, the large
warehouse which, in everyday language, we call ‘the memory’.

Long-term memory

Short-term memory

Normal encoding
20–30 seconds

Life-long

Figure 2.1 Normal encoding

Whilst the short-term memory has a very small capacity, our

long-term memory gives us enough space in which to ‘store’
endless quantities of information. It is never ‘full’. By
comparison, the largest of our modern-day computers can
offer no more information storage space than would fill just
one piece of paper. A second and pleasing feature of this large
memory of ours is that it is ‘life-long’; that is, it retains all the