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 Linkoeping University in Norrkoeping, 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.
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 methods involving people with dementia, but it has been worth the wait. This is a wonderfully 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, Associate Professor & Director, Doctoral Training Centre (Dementia Care), University of Southampton, Southampton, UK
This book provides a researcher with the tools and information they may need to conduct research with individuals with dementia. It aligns with the goals and recommendations set out in the researching dementia roadmap where 'advancing methodological innovation, development and refinement' and 'enabling research to be more inclusive'.
Chloe Waterman, University of Birmingham
Foreword: Ann Johnson
Introduction: John Keady, Lars-Christer Hyden, 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 OEsterholm 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 Ekstroem
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 Ferguson-Coleman and Alys Young
Chapter 10: Critical discourse and policy analysis as a method to understand dementia policies Ann-Charlotte Nedlund and Jonas Nordh
Chapter 11: Privileging the play: Creating theatre with people living with dementia Hannah Zeilig and Lucy Burke
Chapter 12: Conclusion: Messages and futures in social research methods in dementia studies Lars-Christer Hyden, Caroline Swarbrick, Ann Johnson and John Keady