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People with Dementia at the Heart of Research Rachael Litherland

People with Dementia at the Heart of Research By Rachael Litherland

People with Dementia at the Heart of Research by Rachael Litherland

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Summary

Dementia care can be revolutionised to put service users at the centre of decisions, by recognising and removing the societal and environmental barriers in the way of accessibility. The culmination of 5 years of research, this book shows the way through the results of 26 projects led by people with dementia in the DEEP Network.

People with Dementia at the Heart of Research Summary

People with Dementia at the Heart of Research: Co-Producing Research through The Dementia Enquirers Model by Rachael Litherland

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.

People with Dementia at the Heart of Research 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, Alzheimers 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.

About Rachael Litherland

Rachael Litherland (Author)
Rachael Litherland co-founded Innovations in Dementia with Nada Savitch in 2007. She has a background in psychology and advocacy and is particularly interested in ways of working that enhance people's day to day lives. She especially enjoys working with people with dementia in care homes, having begun her working life managing an advocacy project for care home residents with dementiain London. Rachael has focused for the past few years on involvement methods and has seen a lot of change from the early 2000s when she set up an involvement programme for the Alzheimer's Society.

Philly Hare (Author)
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.

Table of 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

Additional information

NGR9781787757028
9781787757028
1787757021
People with Dementia at the Heart of Research: Co-Producing Research through The Dementia Enquirers Model by Rachael Litherland
Rachael Litherland
New
Paperback
Jessica Kingsley Publishers
2024-04-18
176
N/A
Book picture is for illustrative purposes only, actual binding, cover or edition may vary.
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Customer Reviews - People with Dementia at the Heart of Research