People with Dementia at the Heart of Research

Co-Producing Research through The Dementia Enquirers Model

Häftad, Engelska, 2024

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Beskrivning

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.

Produktinformation

Utgivningsdatum:2024-04-18
Mått:152 x 228 x 16 mm
Vikt:260 g
Format:Häftad
Språk:Engelska
Antal sidor:176
Förlag:Jessica Kingsley Publishers
Medarbetare:David Crepaz-Keay
ISBN:9781787757028

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Mer om författaren

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 dementia in 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.

Recensioner i media

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.

Innehållsförteckning

Foreword - by Dr David Crepaz-KeayAcknowledgments1The Background to Dementia Enquirers2An Overview of the Programme3The Dementia Enquirers Projects 4Opening up the World of Research5Tacking the Complexities of Research Ethics6What does this all mean for DEEP Group Members and Facilitators? 7What does this all mean for the Academic Community?8Towards a New Model of Co-research - 'the Driving Seat' 9Reflections and Key Messages10Our ManifestoAppendix 1List of Dementia Enquirers Projects Appendix 2Case StudiesAppendix 3Conference and Seminar Presentations