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Dementia enquirers: pioneering approaches to dementia research in UK.

Authors :
Davies, Teresa
Houston, Agnes
Gordon, Howard
McLintock, Mhari
Mitchell, Wendy
Rook, George
Shakespeare, Tom
Source :
Disability & Society; Jan 2022, Vol. 37 Issue 1, p129-147, 19p
Publication Year :
2022

Abstract

This paper explores the Dementia Enquirers approach to dementia research, and the 10 local projects which have been funded in the first wave of the programme. The paper is written by six people with dementia with expertise by experience, supported by a traditional academic with expertise by research. This co-production enables the voices of people with dementia to be heard, and expands the field of disability studies. The authors discuss problems with traditional academic research, and the different ways that people with dementia go about research. Two examples of research projects led by people with dementia are discussed. The paper explores difficulties people with dementia have had with formal research ethics procedures and how they propose to do things differently. In conclusion, the authors challenge mainstream dementia research to do things differently, and to understand the potential contributions of people with dementia. People with dementia can conduct research People with dementia understand ethics and can come to considered judgements about capacity, consent and the risk of harm. People with dementia may sometimes enjoy advantages in their ways of working Mainstream research and research governance needs to adapt, if people with dementia are to be included. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
09687599
Volume :
37
Issue :
1
Database :
Complementary Index
Journal :
Disability & Society
Publication Type :
Academic Journal
Accession number :
155632603
Full Text :
https://doi.org/10.1080/09687599.2021.1916887