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People with Dementia at the Heart of Research

Paperback / ISBN-13: 9781787757028

Price: £22.99

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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.

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Reviews

This very important book showcases accurately a giant stride this project achieved in moving people living with dementia from participants to leaders in the world of dementia research. As someone fortunate to have been closely involved in one project, and knowing the pioneers and the book's authors well I cannot commend too highly this game changing initiative. For the first time people living with dementia were placed at the centre with their needs, wishes, aspirations, talent and commitment encouraged and supported to lead answering questions we all are asking and can benefit from answering - that is genuine research. Let us all hope the baton it is handing over will be taken further.
Keith Oliver, author of Dear Alzheimer's
People living with dementia know better than anyone what will help to improve their experience. This groundbreaking and heartwarming project shows the potential of putting people with dementia 'in the driving seat' of enquiry. It challenges researchers and research funders to rethink involvement and work in genuine partnership.
Linda Clare, Professor of Clinical Psychology of Ageing and Dementia, University of Exeter
This book is both a challenge to move beyond co-production in research and a guide to how we can achieve it. The questions posed and lessons shared apply not just to research but to how we work together with people with dementia in all aspects of our work.
Colin Capper, Associate Director of Evidence and Involvement, Alzheimer’s Society
This inspirational book marks the emergence of a new research culture for dementia studies. It is essential reading for the research community, policymakers and students of health and social care.
Richard Ward, Senior Lecturer in Dementia Studies, University of Stirling
An essential read for researchers and academics challenging the myths and misconceptions about the ability of people with dementia to actively participate in research. The Dementia Enquirers Gold Standards are excellent and should be used to guide all dementia research.
Dr Hilda Hayo, Chief Admiral Nurse and CEO Dementia UK
This account of the Dementia Enquirers Project has inspired me, and given me excellent resources, to go further in working together with people living with dementia in my own research career.
Jan Oyebode, Professor of Dementia Care, University of Bradford.