People with dementia have often played a passive role in the investigation of their condition. The contributors to this book look at ways of redressing the balance and involving them in the research process. They describe the skills that researchers and care staff need, and the methods they can use, when seeking to draw out and validate the views of people with dementia successfully, and discuss the ways in which such views can be included in debates about dementia methodology and policy.The book focuses on a number of projects which have taken different approaches to working with people with dementia in research, including a chapter examining the difficult process of interviewing people with dementia whose first language is not English and a chapter describing a project which encourages people with dementia to participate in the analysis of the research findings. This varied and innovative book will help those in the fields of health and social policy, dementia research and dementia care to hear the voices of people with dementia more clearly, and to include their opinions more effectively in the provision of services.CONTENTSPart I: Ethical and practical issues of involvement. 1. Introduction: Including people with dementia in research: Methods and motivation, Heather Wilkinson, University of Stirling. 2. Getting down to brass tacks: a discussion of data collection with people with dementia, Charlotte L. Clarke, University of Northumbria at Newcastle and John Keady, University of Wales. 3. Ethical issues in dementia care research, Helen Bartlett and Wendy Martin, Oxford Dementia Centre, Oxford Brookes University . 4. Including the perspectives of older people in institutional care during the consent process, Gill Hubbard, University of Stirling, Murna Downs, Bradford University and Susan Tester, University of Stirling. 5. Including people with dementia: advisory networks and user panels, Lynne Corner, University of Newcastle. Part II: The views of people with dementia. 6. Should people with Alzheimer's Disease take part in research? Elaine Robinson. 7. Did research alter anything? James McKillop. Part III: Methods and motivations. 8. Working with staff to include people with dementia in research, Kate Allan, University of Stirling. 9. Successes and challenges in using focus groups with older people with dementia, Claire Bamford, University of Newcastle with Errollyn Bruce, Bradford Dementia Group. 10. 'Nobody's ever asked how I felt', Rebekah Pratt, University of Stirling. 11. Don't leave me hanging on the telephone: Interviews with people with dementia using the telephone, Anne Mason, University of Stirling and Heather Wilkinson, University of Stirling. 12. Using video observation to include the experiences of people with dementia in research, Ailsa Cook, University of Stirling. 13. South Asian people with dementia: Research issues, Alison M. Bowes, University of Stirling and Heather Wilkinson, University of Stirling. References. Index.
Part I - Ethical and practical issues to involvement; introduction - including people with dementia in research - methods and motivation, Heather Wilkinson; getting down to brass tacks - a discussion of data collection with people with dementia, Charlotte L. Clarke and John Keady; ethical issues in dementia care research, Helen Bartlett and Wendy Martin; including the perspectives of older people in institutional care during the consent process, Gill Hubbard; including people with dementia - advisory networks and user panels, Lynne Corner. Part II - The views of people with dementia: should people with Alzheimer's Disease take part in research?, Elaine Robinson; did research alter anything?, James McKillop. Part III - Methods and motivations: successes and challenges in using focus groups with older people with dementia, Claire Bamford with Errollyn Bruce; ''Nobody's ever asked how I felt'', Rebekah Pratt; don't leave me hanging on the telephone - interviews with people with dementia using the telephone, Anne Mason and Heather Wilkinson; using video observation to include the experiences of people with dementia in research, Alic Cook; South Asian people with dementia - research issues, Alison M. Bowes and Heather Wilkinson.
This book is a useful contribution to our understanding of very complex issues.
