1st Edition

Social Research Methods in Dementia Studies Inclusion and Innovation

    246 Pages
    by Routledge

    246 Pages 35 B/W Illustrations
    by Routledge

    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 relatively new phenomenon.

    A ground-breaking 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, Qualitative Methods and Dementia Studies.



    Foreword: Ann Johnson

    Introduction: John Keady, Lars-Christer Hydén, Ann Johnson and Caroline Swarbrick

    Chapter 1: Developing the Co-researcher INvolvement and Engagement in Dementia model [COINED]: A Co-operative Inquiry Caroline Swarbrick and Open Doors

    Part 1: Social Research Methods-Participatory and Visual Media

    Chapter 2: Walking interviews as a research method with people living with dementia in their local community Agneta Kullberg and Elzana Odzakovic

    Chapter 3: Audio recorded data as a method to understand encounters between people living with dementia and social workers Johannes Österholm and Annika Taghizadeh Larsson

    Chapter 4: Video data as a method to understand non-verbal communication in couples with dementia Elin Nilsson, Ali Reza Majlesi and Anna Ekström

    Chapter 5: Video data and biographical music as a method to record and explore interaction in semantic dementia Jackie Kindell and Ray Wilkinson

    Chapter 6: Video and observation data as a method to document practice and performances of gender in the dementia care based hair salon Sarah Campbell and Richard Ward

    Part 2: Social Research Methods-Application and Innovation

    Chapter 7: Ethnographic methods for understanding practices around dementia among culturally and linguistically diverse people Eleonor Antelius, Mahin Kiwi and Lisa Strandroos

    Chapter 8: Photography and case study interviewing to document intergenerational family care in Singapore-Chinese families where one member has dementia May Yeok Koo and Helen Pusey

    Chapter 9: Storying stories to represent the lived experience of Deaf people living with dementia in research Emma


    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 University, Sweden and director of the Center for Dementia Research [CEDER].

    Dr Ann Johnson is a person living with a diagnosis of dementia in Greater Manchester, UK. She was a Nurse Tutor at The University of Manchester prior to taking early retirement in 2005.

    Dr Caroline Swarbrick is a Research Fellow in the Dementia and Ageing Research Team at The University of Manchester, UK.


    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 perspectives. The book is also incredibly timely, showing a way forward as the field of dementia studies negotiates the participatory turn, grappling with what it actually means to be doing research with people with dementia.

    Alison Phinney, Professor, School of Nursing, 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 contributors take a wonderfully courageous but necessary step that improves the epistemology of dementia and the lives of those diagnosed.

    Steven R. Sabat, Professor Emeritus of Psychology, Georgetown University, Washington, USA

    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, 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 met