Table Of ContentDementia 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,
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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
