Social Research Methods in Dementia Studies: Inclusion and Innovation

247 Pages·2017·8.092 MB·English

by  John Keady (Editor), Lars-Christer Hydén (Editor), Ann Johnson (Editor), Caroline Swarbrick (Editor)

For anyone seeking to do research involving people with dementia, this book
should be required reading. It is both inspiring and useful in its frank discussion
of some of the inventive qualitative methods that are being developed and applied
by emerging scholars who bring a range of social and applied disciplinary per-
spectives. The book is also incredibly timely, showing a way forward as the field
of dementia studies negotiates the participatory turn, grappling with what it actu-
ally means to be doing research with people with dementia.
Alison Phinney, PhD, RN, Professor, School of Nursing, Co-Director,
Centre for Research on Personhood in Dementia, University of British
Columbia, Vancouver, Canada
The innovative methods of investigation, critical discussion and application
thereof, presented in this book enhance our understanding of the inner and social
lives of people with dementia and their care partners far more deeply than could
any randomised controlled trial. By entering their worlds and learning from
people diagnosed while supporting the dignity of everyone involved, the contrib-
utors take a wonderfully courageous but necessary step that improves the epi-
stemology of dementia and the lives of those diagnosed.
Steven R. Sabat, PhD, Professor Emeritus of Psychology,
Georgetown University, Washington, D.C. 20057, U.S.A.
This book heralds a new era in social science research. The compiled papers
position people with dementia in their relational context from a range of
viewpoints. They also articulate new and innovative approaches to research that
challenge convention and drive a desire to better understand the authentic lived
experience of people with dementia in their own environments. It is a must read
for social scientists working in dementia research.
Andrew Robinson RN, MNS, PhD, Professor of Aged Care Nursing,
Co-Director, Wicking Dementia Research and Education Centre,
University of Tasmania, Australia
We have had to wait a long time for a new book about social research methods
involving people with dementia, but it has been worth the wait. This is a wonder-
fully rich textbook written by those actively engaged in cutting edge social
research. The book is current and packed full of creative ideas and approaches for
engaging with citizens with dementia and their families. I would recommend it to
anyone new to this area of research, as well as those looking to advance and
refresh their methodological techniques.
Ruth Bartlett PhD, FHEA, MA, BA, Associate, Professor & Director,
Doctoral Training Centre (Dementia Care), University of Southampton,
Southampton, UK

Social Research Methods in
Dementia Studies
Traditionally, the most preferred social research methods in dementia studies
have been interviews, focus groups and non- participant observations. Most of
these methods have been used for a long time by researchers in other social
research fields, but their application to the field of dementia studies is a relat-
ively new phenomenon.
A ground-b reaking book, Social Research Methods in Dementia Studies, shows
researchers how to adapt their methods of data collection to address the individual
needs of someone who is living with dementia. With an editorial team that includes
Ann Johnson, a trained nurse and person living with dementia, this enlightening
volume mainly draws its contents from two interdisciplinary social research teams
in dementia, namely the Center for Dementia Research (CEDER) at Linköping
University in Norrköping, Sweden and the Dementia and Ageing Research Team
(DART) at The University of Manchester in Manchester, UK. Case examples are
shared in each of the main chapters to help ground the social research method(s) in
a real- life context and provide direction as to how learning can be applied to other
settings. Chapters also contain key references and recommended reading.
This volume will appeal to undergraduate and postgraduate students, as well
as postdoctoral researchers, interested in fields such as: Research Methods, Qual-
itative Methods and Dementia Studies.
John Keady is Professor of Older People’s Mental Health Nursing, a joint
appointment between The University of Manchester and the Greater Manchester
Mental Health NHS Foundation Trust.
Lars- Christer Hydén is Professor of Social Psychology at Linköping Univer-
sity, Sweden and director of the Center for Dementia Research (CEDER).
Ann Johnson is a person living with a diagnosis of dementia in Greater Man-
chester, UK. She was a Nurse Tutor at The University of Manchester prior to
taking early retirement in 2005.
Caroline Swarbrick is a Research Fellow in the Dementia and Ageing Research
Team at The University of Manchester, UK.
Routledge Advances in Research Methods
www.routledge.com/Routledge-A dvances-in-R esearch-Methods/book-s eries/RARM
14 Researching Marginalized 19 Commons, Sustainability,
Groups Democratization
Edited by Kalwant Bhopal and Action Research and the Basic
Ross Deuchar Renewal of Society
Edited by Hans Peter Hansen,
15 Methodologies of Embodiment Birger Steen Nielsen,
Inscribing Bodies in Qualitative Nadarajah Sriskandarajah and
Research Ewa Gunnarsson
Edited by Mia Perry and
Carmen Liliana Medina 20 Phenomenology as Qualitative
Research
16 Social Science Research Ethics A Critical Analysis of Meaning
for a Globalizing World Attribution
Interdisciplinary and Cross- John Paley
Cultural Perspectives
Edited by Keerty Nakray, 21 Sharing Qualitative Research
Margaret Alston and Showing Lived Experience and
Kerri Whittenbury Community Narratives
Edited by Susan Gair and
17 Action Research for Democracy Ariella Van Luyn
New Ideas and Perspectives from
Scandinavia 22 Walking Through Social Research
Edited by Ewa Gunnarsson, Charlotte Bates and
Hans Peter Hansen, Alex Rhys-T aylor
Birger Steen Nielsen and
Nadarajah Sriskandarajah 23 Social Research Methods in
Dementia Studies
18 Cross- Cultural Interviewing Inclusion and Innovation
Feminist Experiences and Edited by John Keady,
Reflections Lars- Christer Hydén, Ann Johnson
Edited by Gabriele Griffin and Caroline Swarbrick
Social Research Methods in
Dementia Studies
Inclusion and Innovation
Edited by John Keady,
Lars- Christer Hydén, Ann Johnson
and Caroline Swarbrick
First published 2018
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
711 Third Avenue, New York, NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2018 selection and editorial matter, John Keady, Lars-C hrister Hydén,
Ann Johnson and Caroline Swarbrick; individual chapters, the contributors
The right of John Keady, Lars-C hrister Hydén, Ann Johnson and Caroline
Swarbrick to be identified as the authors of the editorial matter, and of the
authors for their individual chapters, has been asserted in accordance with
sections 77 and 78 of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or
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known or hereafter invented, including photocopying and recording, or in
any information storage or retrieval system, without permission in writing
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without intent to infringe.
British Library Cataloguing in Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging in Publication Data
A catalog record for this book has been requested
ISBN: 978-1-138-69920-5 (hbk)
ISBN: 978-1-315-51749-0 (ebk)
Typeset in Times New Roman
by Wearset Ltd, Boldon, Tyne and Wear
Contents
Notes on contributors ix
Foreword xv
Acknowledgements xvi
Introduction 1
JOHN KEADY, LARS- CHRISTER HYDéN, ANN JOHNSON AND
CAROLINE SWARBRICK
1 Developing the Co- researcher INvolvement and
Engagement in Dementia model (COINED): a co- operative
inquiry 8
CAROLINE SWARBRICK AND OPEN DOORS
PART I
Social research methods – participatory and visual media 21
2 Walking interviews as a research method with people living
with dementia in their local community 23
AGNETA KULLBERG AND ELzANA ODzAKOvIC
3 Audio recorded data as a method to understand encounters
between people living with dementia and social workers 38
JOHANNES H. ÖSTERHOLM AND
ANNIKA TAGHIzADEH LARSSON
4 Video data as a method to understand non- verbal
communication in couples where one person is living with
dementia 56
ALI REzA MAJLESI, ELIN NILSSON AND ANNA EKSTRÖM
viii Contents
5 Video data and biographical music as a method to record
and explore interaction in semantic dementia 77
JACKIE KINDELL AND RAY WILKINSON
6 Video and observation data as a method to document
practice and performances of gender in the dementia
care- based hair salon: practices and processes 96
SARAH CAMPBELL AND RICHARD WARD
PART II
Social research methods – application and innovation 119
7 Ethnographic methods for understanding practices around
dementia among culturally and linguistically diverse people 121
ELEONOR ANTELIUS, MAHIN KIWI AND LISA STRANDROOS
8 Photography and case study interviewing to document
intergenerational family care in Singapore-C hinese families
where one member is living with dementia 140
MAY YEOK KOO AND HELEN PUSEY
9 Storying stories to represent the lived experience of Deaf
people living with dementia in research 169
EMMA FERGUSON- COLEMAN AND ALYS YOUNG
10 Critical discourse and policy analysis as a method to
understand dementia policies 192
ANN- CHARLOTTE NEDLUND AND JONAS NORDH
11 Privileging the play: creating theatre with people living with
dementia 205
HANNAH zEILIG AND LUCY BURKE
12 Conclusion: messages and futures in social research
methods in dementia studies 222
LARS- CHRISTER HYDéN, CAROLINE SWARBRICK,
ANN JOHNSON AND JOHN KEADY
Index 225
Contributors
Eleonor Antelius is a medical anthropologist currently holding a position as
Senior Lecturer of Health and Society with a focus on communication and
dementia, at the Division of Aging and Social Change and Centre for Demen-
tia Research at the Department of Social and Welfare Studies at Linköping
University. Her research primarily concerns communicative disorders in rela-
tion to meaning making processes and being able to maintain/uphold a sense
of self. Social interaction, identity, embodiment, ethnicity and cross- cultural
perceptions and experiences of illnesses and ageing are all central concepts in
her research. She has initiated and coordinates the international research
network Different dementias as well serving as president of The Nordic
Research Network on Ethnicity and Dementia. She is co-e ditor of the book
Living with dementia: relations, responses and agency in everyday life (Pal-
grave Macmillan) as well as leading guest editor of the special issue Ethno-
cultural Contextualisation of Dementia Care: Cross- cultural Perceptions on
the Notion of Self in Care Management Journals.
Lucy Burke is Principal Lecturer in the Department of English at Manchester
Metropolitan University. Her research explores the cultural dimensions of the
current dementia crisis from two main perspectives: first, how dementia is
represented across a range of literary, filmic, televisual and auto/biographical
texts; and, second, the role of creativity and the arts and humanities in rela-
tion to the lived experiences of dementia and care. She is particularly inter-
ested in how we think about value in this context and what it means to try to
measure and capture the value of the arts. She is also currently working with
younger disabled people on a major AHRC Connected Communities project,
D4D, which explores concepts of identity, community and exclusion through
a range of arts based activities.
Sarah Campbell is a Research Associate and PhD candidate within the Demen-
tia and Ageing Research Team in the School of Health Sciences at The Uni-
versity of Manchester. Sarah works on the ESRC/NIHR funded
‘Neighbourhoods and Dementia: a mixed methods study’ as part of work pro-
gramme 4: ‘Neighbourhoods: Our People, Our Places’. She is also working
on a PhD in Dementia Studies exploring ‘Atmospheres of Dementia Care’