Full Description
People with dementia are uniquely qualified to discuss the challenges of their condition and the features of effective support, but their voices are all too often drowned out in research and debates about policy. It's time for that to change.
Dementia Enquirers is an ambitious and novel programme of work which has tested out what it means for people with dementia to lead research and has developed a new 'driving seat' approach to co-research.
This ground-breaking book features 26 research projects led by groups of people with dementia, supported by group facilitators and academics, to make their voices heard. Topics include giving up driving, GP dementia reviews, living alone with dementia, and using AI platforms such as smart speakers. The book also describes how people with dementia shaped the entire programme, and addressed head-on issues such as ethics approval processes and complex research language.
A key read for anyone involved in dementia support, this research brings the voices of people with dementia to the fore to explore their experiences of researching the condition.
Contents
Foreword - by Dr David Crepaz-Keay
Acknowledgments
1
The Background to Dementia Enquirers
2
An Overview of the Programme
3
The Dementia Enquirers Projects
4
Opening up the World of Research
5
Tacking the Complexities of Research Ethics
6
What does this all mean for DEEP Group Members and Facilitators?
7
What does this all mean for the Academic Community?
8
Towards a New Model of Co-research - 'the Driving Seat'
9
Reflections and Key Messages
10
Our Manifesto
Appendix 1
List of Dementia Enquirers Projects
Appendix 2
Case Studies
Appendix 3
Conference and Seminar Presentations
