Abstract: Aim: To find out what helps and what acts as a barrier to involving people with dementia as co‐researchers, from the perspectives of people with dementia, gatekeepers (family caregivers, ethics committee members, service providers) and researchers.
Methods: Interviews with 19 individuals (including five people with dementia) with co‐research experience.
Results: Four themes emerged from interviews with 19 participants:
(1) “getting one's head round it” – checking out assumptions about research and dementia and different use of language
(2) practicalities eg transport and clear, accessible communication
(3)“this feeling of safety” – perceived danger, protectiveness and opportunities for building trust
(4) motivations, including ‘making a difference’ and “keeping doing”
Conclusions: The findings confirm previous studies of PPI in dementia. They also show that the mental capacity of potential co‐researchers with dementia is only a part of the picture, with attitudes and expectations of researchers, gatekeepers and people with dementia also forming barriers. Researcher education, adequate resourcing, and both creativity and flexibility are needed to support recruitment of co‐researchers with dementia and to enable meaningful co‐research.
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Categories: journal article service users and carers researchers general principles of good practice involving seldom heard groups training and supporting researchers people with communication difficulties
Date Entered: 2019/11/06
Date Edited: 2019/11/06