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 Dementia Care

Edited by
Trevor Adams PhD MSC RN Cert Ed CPN Cert
Lecturer in Mental Health, European Institute of Health and Medical
Sciences, University of Surrey, Guildford, UK

and

Jill Manthorpe MA
Reader in Community Care, School of Nursing, Social Work and
Applied Health Studies, University of Hull, UK

A member of the Hodder Headline Group

London
First published in Great Britain in 2003 by Arnold,
a member of the Hodder Headline Group,
338 Euston Road, London NW1 3BH

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Distributed in the USA by

Oxford University Press Inc.,
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© 2003 Arnold Publishers

All rights reserved. No part of this publication may be reproduced or

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system, without either prior permission in writing from the publisher or a
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are issued by the Copyright Licensing Agency: 90 Tottenham Court Road,
London W1T 4LP

Whilst the advice and information in this book are believed to be true and
accurate at the date of going to press, neither the authors nor the publisher
can accept any legal responsibility or liability for any errors or omissions
that may be made. In particular (but without limiting the generality of the
preceding disclaimer) every effort has been made to check drug dosages;
however, it is still possible that errors have been missed. Furthermore,
dosage schedules are constantly being revised and new side-effects
recognized. For these reasons the reader is strongly urged to consult the
drug companies' printed instructions before administering any of the drugs
recommended in this book.

British Library Cataloguing in Publication Data

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

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A catalog record for this book is available from the Library of Congress

ISBN 0 340 81020 3

1 2 3 4 5 6 7 8 9 10

Commissioning Editor: Georgina Bentliff

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What do you think about this book? Or any other Arnold title?
Please send your comments to [email protected]
 Contents

Contributors v
Foreword ix
Introduction x

Section 1: Approaches to practice

1 Constructing dementia 3
Trevor Adams and Ruth Bartlett

2 Valuing people with dementia 22

Wendy Martin and Helen Bartlett

3 Policy and practice in dementia care 35

Jill Manthorpe and Trevor Adams

Section 2: Person-centred practice

4 Working with people in the early stages of dementia 51

Lindsay Royan

5 Managing language and communication difficulties in Alzheimer's

dementia: the link to behaviour 69
Karen Bryan and Jane Maxim

6 Counselling people with dementia 86

Elizabeth Bartlett and Richard Cheston

7 Addressing the physical care needs of people with dementia 103

Roger Watson

8 Palliative care for people with dementia 114

Kay de Vries

9 Remembering and forgetting: group work with people who have

dementia 136
Richard Cheston, Kerry Jones and Jane Gilliard
 Contents

10 Positive communication with people who have dementia 148

Jonathan Parker

11 Younger people with dementia: coming out of the shadows 164

Maria Parsons

Section 3: Practice systems

12 Helping families cope with dementia 187
Alison Marriott

13 Developing ethnically sensitive and appropriate dementia

care practice 202
Anthea Innes

14 Supporting and supervising in dementia care 213

Mark Holman

15 Elder abuse and people with dementia 225

Bridget Penhale

16 Maintaining quality in dementia care practice 240

Dawn Brooker

Index 257

iv
 Contributors

Trevor Adams PhD MSc RN CertEd CPNCert has worked in dementia care
nursing for over 25 years. During this time, Trevor has been involved in devel-
oping dementia care nursing through practice, education and research. He is
currently Mental Health Pathway Leader for the MSc in Advanced Practice at the
European Institute of Health and Medical Science, University of Surrey, UK.
Elizabeth Bartlett DipSocStud Relate Certificated Counsellor is Counsellor with
the Salisbury and District Branch of the Alzheimer's Society, UK. Before estab-
lishing this branch of the society in 1985, she was a social worker and a Relate
counsellor. The initial focus of Elizabeth's work was on practical services for
people with dementia, but the need for counselling became increasingly apparent.
As a result, she was in 1999 chosen to lead a pilot project on counselling for people
with a diagnosis of dementia.
Helen Bartlett BA MSc PhD RGN RHV is Foundation Director and Professor of
the Australasian Centre on Ageing, University of Queensland, Brisbane, Australia
and was previously Professor of Health Studies at Oxford Brookes University, UK.
Her research interests include quality measurement and policy issues in long-term
care, especially in nursing and residential homes.
Ruth Bartlett RMN BA MA is Research Consultant at the Oxford Dementia
Centre, Oxford Brookes University, Oxford, UK and a PhD student in the
Sociology Department of Oxford Brookes University. She is researching the quali-
tative dimensions of social exclusion in relation to older people with dementia
living in residential care. Ruth has also worked as a mental health nurse in a range
of clinical areas.
Dawn Brooker BSc MSc PhD CPsychol(Clin) is currently employed by the
Bradford Dementia Group at the University of Bradford, UK, where she is the
Strategic Lead for Dementia Care Mapping. She was formerly Director of the
Oxford Dementia Centre and has worked as a clinical psychologist. Dawn's
research interests include the evaluation of service quality, organizational change,
therapeutic interventions, person-centred care and emotional distress and coping
in people with dementia.

v
 Contributors

Karen Bryan BSc PhD RegMRCSLT is a Speech and Language Therapist and
Professor of Clinical Practice at the European Institute of Health and Medical
Sciences, University of Surrey, Guildford, UK. Her research has addressed assess-
ment and management of communication problems in people with dementia.

Richard Cheston MA PhD DipCPsychol is a Consultant Clinical Psychologist with

Avon and Wiltshire Mental Health Partnership NHS Trust, Trowbridge, UK as
well as a research fellow at Bath University. He has published extensively on the
experiences of people with dementia and is the co-author with Mike Bender of
Understanding dementia: the man with the worried eyes.
Kay de Vries RGN BSc(Hons) PGCEA MSc is Senior Lecturer at the Princess Alice
Hospice, Esher, Surrey, and Research Fellow at the European Institute of Health
and Medical Sciences, University of Surrey, Guildford, UK She is currently under-
taking doctoral research into dementia and dying. Prior to working in the UK, Kay
practised as a public health nurse in New Zealand.

Jane Gilliard BA CQSW FRIPH is Director of Dementia Voice, the dementia serv-
ices development centre for south-west England, having worked with and for
people with dementia for about 16 years as a social worker and a researcher. Jane
chairs the National Network of Dementia Services Development Centres and is
Visiting Professor in the Faculty of Health and Social Care at the University of the
West of England.
Mark Holman MA RN works as a Community Mental Health Nurse in
Derwentside, County Durham. He has been involved in supervisory relationships
as both supervisee and supervisor for more than 12 years, 8 of which he has spent
working in older people's services.

Anthea limes BA MSc PhD is a Research Fellow at the Centre for Social Research
on Dementia in Stirling. Her work has investigated the experiences of people with
dementia, informal care-givers and care workers. Anthea's research and publica-
tions to date have focused on marginalized groups, such as minority ethnic
groups, unqualified care staff and those living in rural areas.

Kerry Jones BSc(Hons) MA is a Research Officer at Dementia Voice, the dementia

services development centre for southwest England. Kerry has worked for 17
years with various client groups including people with dementia. Trained in social
and health care, and research and research management, Kerry has embarked
upon a diversity of health and social care related research projects, prior to her
work with Dementia Voice and the development of the Psychotherapeutic Groups
for People with Dementia project. Kerry is presently part of a three-year Europe-
funded project to assess the impact of technology on the quality of life of people
with dementia in five European countries. She also teaches and develops work-
shops on dementia-specific issues in the UK and overseas.

vi
 Contributors

Jill Manthorpe MA is Reader in Community Care at the University of Hull, where

she specializes in research and teaching in gerontology. She has worked in the
voluntary sector and is currently undertaking research into food and dementia,
intermediate care and older nurses.
Alison Marriott BSc MSc CPsychol AFBPS is Consultant Clinical Psychologist,
Manchester Mental Health and Social Care Trust, Manchester, UK and a UKCP-
registered Family/Systems Therapist. She works clinically with older people and
their families in Central Manchester and has published in a number of areas,
including family therapy and psychological intervention for the carers of people
with dementia.
Wendy Martin BSc MA RGN is Associate Lecturer at The Open University and a
research student at the University of Warwick. She was previously a researcher
for a project exploring the empowerment of older people with dementia in
different care settings at the Oxford Dementia Centre. She has worked as a
researcher on projects relating to ageing, bereavement, cancer care and family
studies.
Jane Maxim MA PhD RegMRCSLT is Speech and Language Therapist, Head of
Department and Senior Lecturer in Human Communication Science at University
College London, UK. Her research has focused on language in normal and
abnormal populations and communication training for care assistants.
Jonathan Parker BA(Hons) MA CQSW ILTM is Head of Social Work in the School
of Nursing, Social Work and Applied Health Studies, University of Hull, UK. His
research interests include dementia care and reminiscence, life story and biogra-
phical approaches. Before joining the university, Jonathan worked as a specialist
social worker for people with dementia. He is also a cognitive behavioural
psychotherapist.
Maria Parsons BA(Hons) CQSW PGCE MA, a social worker by profession, has
over 20 years experience in practice, management and lecturing. She was instru-
mental in setting up the Oxford Dementia Centre, part of the Institute of Public
Care at Oxford Brookes University. As Head of the centre, Maria is involved in
consultancy, research and training in dementia care for health and social services
and housing organizations, and in the care of older people with mental health
needs.
Bridget Penhale BA MSc CQSW is Lecturer in Social Work and Applied Health
Studies at the University of Hull, UK. She has specialized in work with older
people since 1983. Bridget has published in the areas of decision-making and
mentally incapacitated adults, social work and dementia, as well as extensively on
elder abuse. Her principal research interests are elder abuse, domestic violence
and mental health.

vii
 Contributors

Lindsay Royan CPsychol BA(Jt Hons) DipDTh is Consultant Clinical Psychologist

with North East London Mental Health NHS Trust, Essex, UK. She specializes in
working with people in the early stages of dementia and co-wrote a document on
the expanding role of memory clinics. She was a member of the mental health task
group for the National Service Framework for Older People.
Roger Watson BSc PhD RGN CBiol FIBiol ILTM FRSA is Professor of Nursing in
the Department of Nursing and Applied Health Sciences, University of Hull, UK,
where he is responsible for leading research in nursing. Roger's clinical experience
was gained working with older people with dementia, and he has a particular
interest in the assessment of eating difficulty.

viii
 Foreword

It is a pleasure to write a piece for the start of this book, a book for those who are
trying to support people in our position. We live at home, and about two years ago
Robbie was diagnosed as having memory problems. In fact, he recognized that
what was wrong could be related to his memory problem by reading a small
article in a holiday magazine for older people. He rang our GP and pushed to be
seen. Now Robbie is on anti-dementia drugs, and we are managing.
How would we like professionals to be? We would like them to be encouraging,
and we would like them to give both of us information (which doesn't always
happen). We appreciate it that if we need to see our community mental health
nurse, we can telephone her and she will come to see us. And we do welcome
people who are kind and helpful, not just those who work with memory problems,
but all those who help with other difficulties.
When nurses and doctors carry out tests, it makes a difference if they do this in
a certain way: it is best if they see the positives and don't keep emphasizing the
mistakes or failures that are going on in one's head. We like it if people have a
sense of humour, but that doesn't mean that we don't have bad days when we get
cross with ourselves and each other. We like it if people are predictable and reli-
able: it helps, for example, to get letters about appointments. We would like, too,
to be able to talk more to other people in our position.
There are some things that could be better, of course. We were very sad at the
state of the hospital when one of us broke a bone. And we found we were booked
for an assessment of an aspect of the condition when the drugs to treat it had
already been started. And, as we have said before, putting us in touch with other
people would be good.
We are able to share many good things from the past and still enjoy going out -
bowling and on holiday. That doesn't mean we have forgotten the terrible things,
the war in particular, but we are able to talk about the many good times of the past
and to enjoy the present.
We know people are very rushed, but our final point is that we do value those
who have time to listen to us and give us good advice, who are kind and pleasant.
We hope this book will equip people to support those in our position, both now
and in the future. Our best wishes to you.

Robbie and Mollie Ness

ix
 Introduction

Over the past 20 years, there have been considerable changes in the provision of
support to people with dementia, including a reorientation from institutional to
community care, an increased reliance on families as the primary source of care, a
discovery of the voice of the person with dementia and a shift from the monopro-
fessional, medically orientated provision of care to multidisciplinary teamwork.
The aim of this book is to provide professionals working with people who have
dementia and their informal carers with an account of innovative practice,
research and ideas on the contemporary provision of multidisciplinary dementia
care.
Although, not so long ago, dementia care attracted little innovation, it has now
become a dynamic and exciting area of professional development. Indeed,
dementia care is probably one of the fastest developing areas of health and social
care. These changes have not, however, been uniform throughout health and
social care, and there are still many areas in which dementia care is firmly set
within the 'old culture' of dementia care and all this conveys about institutional
models of thinking, lack of imagination and a focus on paternalistic provision. We
hope that this book will go some way to extending the 'new culture' of dementia
care, contribute to the dissemination of good practice within dementia care and
offer new ideas or support to those working or training in this area.
The book comprises three sections. The first is concerned with various over-
arching approaches to practice within dementia care relating to such issues as the
nature of dementia, ethical practice and health and social policy. In Chapter 1,
Trevor Adams and Ruth Bartlett draw on recent developments within social
constructionism and disability to provide a critical analysis of how dementia is
understood within contemporary society. This chapter broadens current thinking
about 'dementia' by calling for greater regard to how people with dementia may,
in our view, be helped by seeing dementia as a disability.
Helen Bartlett and Wendy Martin, in the next chapter, look at the way in which
people with dementia are constructed within a society that prevents their full
participation. In the last chapter in this section, the editors, Jill Manthorpe and
Trevor Adams provide a critical review of the policy developments that have
underpinned dementia care practice in the UK. Each issue raised in this section is

X
 Introduction

important and has considerable implications for the everyday work of health and
social professionals working with people with dementia and their families.
The second section relates to 'person-centred approaches' to dementia care. In
this section, the term 'person-centred approach' is adopted as it is used in the
Department of Health's National Service Framework for Older People, and the
contributors provide various accounts of therapeutic approaches that are now
available within dementia care. The main aim of person-centred dementia care can
appear to identify and address the needs of a range of people associated with the
care of people with dementia. The individual with dementia must, however, be at
the centre of this process, and this is one shift in emphasis that will be a yardstick
for any evaluations of the National Service Framework and its impressive plans
for improved service delivery systems in dementia care.
In this second section, Lyndsay Royan provides detailed insights into the early
identification of people with dementia in the community and emphasizes that the
effect of this shift is to facilitate swift intervention and support for people in the
early stages of dementia and their families. Karen Bryan and Jane Maxim next
address the neglected issue of communication and people with dementia,
describing how practitioners can manage language and communication difficul-
ties among people with Alzheimer's disease. Elizabeth Bartlett and Richard
Cheston explore these processes of communication more fully in their chapter and
examine various counselling strategies that health and social care professionals
may use with people with dementia.
'Person-centred care' has, however, often been understood in psychological and
social terms, but when people have dementia, their experience of dementia is
embodied and affects how they experience their body. People with dementia may
at various times feel tired, slow, wet or untidy. Indeed, having dementia is just as
much a bodily as it is an emotional experience. This section therefore continues by
examining the physical features associated with having a dementia. Roger Watson
provides a review of the bodily needs of people with dementia. This importance
of meeting the bodily needs of those with dementia is continued by Kay deVries,
who develops a palliative care approach to people in the latter stages of dementia.
Because of the tendency within a person-centred approach to marginalize people
who are dying, the palliative care needs of people with dementia must not be
neglected. People with dementia have bodies just as much as they have emotions,
and people in the latter stages of dementia require the same standard of care as
anyone else.
There is a tendency for the idea of person-centred care to fail to highlight
various aspects of dementia care, one such area being working with groups of
people with dementia. This omission is addressed in Chapter 9 by Richard
Cheston, Kerry Jones and Jane Gilliard, who provide a description of a
psychotherapeutic approach to groups of people with dementia.
The book's third section examines various systems associated with practice

Xi
 Introduction

with people who have dementia and their families. In Chapter 12, Alison Marriott
considers the various ways in which dementia care practitioners may help fami-
lies to cope with dementia. Anthea Innes then addresses the issue of developing
ethnically sensitive practice for people with dementia. The importance of the
person with dementia is further developed by Jonathan Parker in Chapter 10 who
develops the notion of positive communication. This chapter complements the
earlier chapter by Karen Bryan and Jane Maxim and moves forward recent work
by Tom Kitwood (1997) relating to positive person work. Finally, within this
section, Maria Parsons highlights the needs of younger people with dementia and
puts forward various responses that can be made to enhance their welfare.
In Chapter 14, Mark Holman examines how clinical supervision may be used to
help practitioners to work with people with dementia and their families. This is an
important chapter as working with people who have dementia is physically and
emotionally demanding. Moreover, it frequently leads to practitioners becoming
emotionally numbed to the pain that individuals with dementia experience. We
would strongly argue that clinical supervision should be the part of the normal
experience of dementia care practitioners and should make an important contri-
bution to ensuring good practice.
The failure of service agencies to provide staff with effective clinical supervision
may lead to staff abusing people with dementia. We believe that clinical supervi-
sion is one way in which abuse may be prevented. Bridget Pendale addresses the
issue of abuse in dementia care more fully in Chapter 15, and finally Dawn
Brooker examines an important means of ensuring quality in dementia care -
dementia care mapping.
As much as anything, we believe that the response to people with dementia is
multidisciplinary: whereas all professionals will have their own distinctive contri-
bution, we believe that the future for dementia care lies in a multidisciplinary
response in combination with medical diagnosis and to accompany treatment or
to provide care when medication has no longer any benefit. We hope that this
book will contribute to the continued development of this new culture of
dementia care.

Trevor Adams and Jill Manthorpe

REFERENCE
Kitwood, T. 1997: Dementia reconsidered: the person comes first. Buckingham: Open University
Press.

Xii
 Section 1

Approaches to
practice
This page intentionally left blank
Chapter
Constructing
dementia
Trevor Adams and Ruth Bartlett

The first aim of this chapter is to examine recent approaches towards people with
dementia, the second is to describe the way in which language constructs people
with dementia, and the third is to provide a critical perspective on how people
with dementia are understood and treated within society. Underlying the chapter
is a social constructionist position by which the actions and language people use
with respect to dementia are understood as constructing dementia (Burr 1995).
The chapter addresses such questions as: How does society construct people who
are chronically confused? How do these constructions influence the way in which
people with dementia feel about themselves? To what extent do these disadvan-
tage people with dementia? The approach adopted in this chapter criticises domi-
nant oppressive and discriminatory forms of representing people with dementia
and provides a positive means of reconstructing their identity in terms that are
more advantageous to them.

DISCOURSE, SOCIAL PRACTICES AND THE

CONSTRUCTION OF DEMENTIA
Language is a system of signs through which the social world is represented.
Saussure (1974) argued that these signs comprise 'signifiers' and 'signified'. Take,
for example, the two words 'bag' and 'big'. The signifiers are the marks that are
made on the page, and the signified is the meaning made available by the signifier.
Saussure argued that there is no natural or inevitable link between a signifier and a
signified, and that signs do not possess any fixed or essential meaning. According to
Saussure, the meaning that signifieds possess arises out of their difference from
other signifieds. So 'bag' is a bag not because of its 'bagness' but because of its

3
 Constructing dementia

difference from other signifieds. This issue of 'marking a difference' is of particular

interest since the way in which people with dementia are represented in talk, actions
and the media affects how they are categorized and differentiated within society.
When people write, speak or do anything associated with people who have
dementia, they draw upon a range of culturally and historically specific signifying
practices that come together to form a discourse (Hall 1997). Foucault provides
insights into how discourse is contained within social practices that give rise to the
way in which social phenomena are understood. He defines discourses as 'practices
which systematically form the objects they speak' (Foucault 1972, p. 49). Moreover,
Foucault does not restrict discourse to refer to just verbal systems of representation,
that is spoken discourse, but instead extends discourses to include people's behav-
iours and social practices. In this sense, discourse provides a way by which the
knowledge about the social world comes to exist. Because there are many ways in
which social phenomena may be described, there are many ways of talking and
behaving with regard to people with dementia. The concern within this chapter is
therefore how people with dementia are represented within the social world.
The relationship between social practices, discourse and the construction of
social phenomena may be illustrated by an episode entitled The Rat that is taken
from the television comedy series Fawlty Towers. The story line is that Manuel, the
hotel porter, has acquired a rat that he keeps hidden away in his hotel room.
Inevitably, the rat escapes just when a hotel inspector is due to visit the hotel.
Throughout the episode, social practices occur relating to the rat, practices that
contain certain discourses and are therefore called 'discursive practices'. Two sets
of discursive practices are particularly evident. The first relates to love and affec-
tion, and provides the rat with the identity of something that Manuel adores. The
second relates to hygiene and identifies the rat as a health hazard. The presence of
one discourse rather than another makes certain features of a person (or, in this
case, a rat) more visible than if another discourse were used. It is through the use
of these discursive practices that people acquire knowledge about another. This is
true of dementia: the availability and use of different discourses within social
practices allow people to understand and experience dementia in particular ways
and also give rise to their variable treatment in society.
Traditional ways of understanding identity that have arisen since the
Enlightenment have assumed that a person's identity results from some essential
feature associated with that person. An alternative argument has more recently
developed in which identity is seen to be dependent not upon individuals them-
selves but rather upon their surrounding social setting (Antaki and Widdicome
1998). What is at issue here is the organization of conversational and discursive
materials within people's talk and other social practices that gives rise to people
occupying certain subject positions (see Wetherell 1998). The idea is that social prac-
tices within which discourses are contained allow people to occupy certain social
positions within society.

4
 Dementia as a bio-medical construction

It should also be noted that additional insights into the representation of people
with dementia may also be gleaned from a further aspect of Saussure's work. The
focus of attention here is that meaning is dependent upon marking the difference
between signifiers. Thus, the meaning of the signifier 'dementia' arises through
the difference between dementia and other social phenomena. The meanings asso-
ciated with dementia are therefore understood in terms of their difference and
relate to what it is not, leading to people with dementia being thought of as not
rational and not normal. By marking out the difference between those who have
dementia and those who do not, people with dementia are constructed as being
different from the rest of society, as marginal and part of 'the Other'. This way of
understanding people with dementia gives important insights into the injustice
that people with dementia receive within society.

DEMENTIA AS A BIO-MEDICAL CONSTRUCTION

Towards the end of the nineteenth century, various discourses became available
through the work of medical scientists that highlighted bio-medical features of
dementia. It is important to note that these discourses did not exist prior to the
work of medical science but rather arose from a particular way in which medical
scientists saw people with dementia that did not exist prior to their work. One of
these discourses highlighted the physiological nature of dementia and gave rise to
experimental studies that led to such social practices as the identification of
neurophysiological and neurochemical changes in the brains of chronically
confused people, the classification of brain pathology and the publication of
papers in acclaimed and prestigious scientific journals. Another discourse that
became available at this time related to cognitivism. This discourse constructed
chronic confusion in terms of the 'cognitive paradigm' in which dementia is
primarily understood to affect people's cognitive functioning and give rise to
memory failure (see Berrios and Freeman 1991).
Throughout the twentieth century, these two discourses were typically used to
construct people with dementia. Kitwood argues that advances in technology in
the 1960s and 70s, such as the development of computerized tomography, were
used to support bio-medical discourses and gave rise to the closing down of
psychosocial discourse about people with dementia (Kitwood 1987). In addition,
various writers, notably Katzman and Bick (2000) and Fox (1989), describe the
social and political processes that led to the increased public awareness of
Alzheimer's disease in the 1980s and helped to transform it from an obscure,
rarely applied medical diagnosis to a major cause of death.
Bio-medical discourses are contained in various social practices, such as the
standard practice that professional bodies in medicine have of giving definitions
of illnesses. The oft-quoted definition of dementia given by the Royal College of
Physicians (1981), for example, defined dementia as:

5
 Constructing dementia

the acquired global impairment of higher cortical functions including

memory, the capacity to solve the problems of everyday living, the perform-
ance of learned perceptuo-motors skills, the correct use of social skills and the
control of emotional reactions, all aspects of language and communication
and the control of emotional reactions, in the absence of gross clouding of
consciousness.

The constitution of people with dementia through the use of bio-medical

discourses has been thought to lead to the depersonalization of people with
dementia (Jonas-Simpson 2001). An example of this may be found in medical text-
books. Jacques and Jackson (2000, p. 99), for example, comment that 'At the final
stages the patient may be assumed to have no real subjective awareness, no sense
of self at all, and to be in this sense mentally "dead"'. Social scientists, Fontana and
Smith (1989, p. 36) argue that:

The Alzheimer's disease patients, in the early stages of the disease, continue
to interact on the surface as if they were sentient beings. ... This self is
increasingly devoid of content.

In publications for the wider public, the well-known evolutionary scientist

Richard Dworkin (1993, p. 234) comments that:

Demented people in the late stages have lost the capacity to recognize, appre-
ciate or suffer indignity. ... It is expensive, tedious and difficult to keep seri-
ously demented patients clean, to assure them space for privacy, to give them
the personal attention they often crave.

This last quotation, perhaps more than any of the others, displays how the
construction of people with dementia can affect their welfare. The constitution of
people with dementia through bio-medical discourses alone constitutes people
with dementia as having diminished and limited human value. Constructed in
this way, bio-medical discourse identifies people with dementia as having no
sense of self or any ability to make worthwhile decisions, thus allowing the possi-
bility that they might be seen as having no worth and being an infringement on
other people.

IMPLICATIONS FOR PRACTICE

When used in health and social care, bio-medical discourse positions people with
dementia as having a severe mental illness - dementia, chronic brain syndrome or
chronic brain failure. When dementia is understood as an illness, those with the
condition themselves recede into the background, and the disease process itself is

6
 Dementia as a behavioural problem

highlighted. This construction of dementia plays down the significance of, for
example, psychosocial features of dementia which might have contributed to its
development.
Moreover, bio-medical discourse highlights the relevance of physical treatments
such as drug therapy and creates the impression that a cure may be just around
the corner. In the absence of a cure, bio-medical discourses create therapeutic
nihilism and 'warehousing', in which those with dementia cannot be offered a
cure and are stored away in institutions in the hope that a cure may one day
appear. The bio-medical discourse that often surrounds chronic confusion there-
fore constructs the work of health and social care workers as a form of 'body main-
tenance' in which the person with dementia is merely kept clean, fed and watered.
In addition, the failure of bio-medical discourse to construct people with
dementia as sensate human beings may give cause for health and social care
workers to develop practices that distance them from people with dementia.
When this occurs, people with dementia are often treated as objects or objectified,
and are more likely to be at risk of oppressive and discriminatory practices,
including emotional and physical abuse.
The objectification of people with dementia was a consistent finding of
numerous reports on mental hospitals in the 1960s and 70s, especially notable
being Sans Everything, which focused specifically on older people. In Sans
Everything, an acting chief male nurse reported that:

after six months in certain hospitals, there are ways in which psychiatric
nurses are no longer like ordinary people. Their attitude to mental illness
changes - as it does to old age, to cruelty, to people's needs, and to dying. It
is as if they become numbed to these things (Robb 1967, p. 13).

In this way, people with dementia often found themselves placed in difficult and
sometimes humiliating situations that led to their devaluation, disempowerment
and marginalization by psychiatric nurses. One explanation why institutional
practices such as these occurred may be the dominance of bio-medical discourses
that identified people with dementia as being different from the rest of society and
constructed them as marginal, as 'the Other'.

DEMENTIA AS A BEHAVIOURAL PROBLEM

Various discourses developed within the academic discipline of psychology have
been applied to people with dementia. These have constructed people with
dementia in terms of their behaviour rather than, as with bio-medical discourse,
their diagnosis. They have given rise to dementia care practitioners regarding
some of the behaviours of those with dementia, such as wandering and aggres-
sion, as a problem. This behaviour is typically seen to be the result of prior

7
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