Social Research Methods in 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 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.

• AcknowledgementsContributorsForeword: Ann JohnsonIntroduction: 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 DoorsPart 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 LarssonChapter 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 InnovationChapter 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 Hydén, Caroline Swarbrick, Ann Johnson and John Keady

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, CanadaThe 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, USAThis 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, AustraliaWe have had to wait a long time for a new book about social research met