Facilitators and barriers to co-research by people with dementia and academic researchers: findings from a qualitative study

Jacob Waite, Fiona Poland, Georgina Charlesworth

Research output: Contribution to journalArticle

18 Citations (Scopus)
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Abstract

Background
Public and patient involvement (PPI) is now established in dementia research. Barriers and facilitators to engagement from family carers and people in early stages of dementia have been explored. However, specific barriers and facilitators to co‐research with people with dementia have not previously been investigated.
Objective
To discover the facilitators of, and barriers 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.
Design
Thematic analysis of data from individual interviews about the co‐research experience.
Results
Four themes emerged from interviews with 19 participants (five people with dementia): “getting one's head round it” (assumptions about research and dementia; different forms of language); practicalities (eg transport; accessibility of communication); “this feeling of safety” (perceptions of danger, protectiveness and opportunities for building trust); and motivations (“making a difference” and “keeping doing”).
Conclusions
Findings both replicate and extend previous knowledge on PPI in dementia. Cognitive 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.
Original languageEnglish
Pages (from-to)761-771
Number of pages11
JournalHealth Expectations
Volume22
Issue number4
Early online date22 Apr 2019
DOIs
Publication statusPublished - Aug 2019

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