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 Amazon Alexa. 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.
Philly Hare became a Director of Innovations in Dementia in January 2017. She was previously a Programme Manager at Joseph Rowntree Foundation, overseeing their major programme Dementia without Walls. She is also an Exchange Fellow at the University of Edinburgh and Honorary Visiting Researcher at the University of Bradford. Philly's particular interests are the empowerment and inclusion of people with dementia, and the application of research evidence to practice. As a qualified social worker, Philly has over 30 years' experience within the NHS, Local Authorities and the voluntary sector in many areas of adult social care. Rachael Litherland co-founded Innovations in Dementia in 2007 - a UK community interest company. Innovations in Dementia promotes a positive but realistic view of dementia, demonstrating that, although it is life changing, it does not have to be life ending. Rachael has a background in advocacy in care homes and psychology and works on a number of projects supporting people with dementia to shape and deliver research. Rachael was instrumental in setting up the DEEP network - a UK-wide network of over 80 grassroots groups of people with dementia who aim to influence the world around them. Rachael has a lot of experience of co-production work with people with dementia. She has co-led the transformational Dementia Enquirers programme, where people with dementia have been supported to lead their own research projects about issues that are important to them. Rachael currently holds an NIHR dementia career award where she is carrying out a realist evaluation of a self management resource for and by people with dementia called "My Life, My Goals". Innovations in Dementia is a not-for-profit Community Interest Company (CIC). People with dementia are at the heart and start of all their work. They promote a positive but realistic view of dementia, demonstrating that, although it is life changing, it does not have to be life ending. They support people with dementia to live with hope and keep control of their lives.
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
The story of the pioneering work of the Dementia Enquirers - co-creating new knowledge and processes in dementia research
