Involving people with dementia in research v2
Research type
Research Study
Full title
Involving people living with dementia in research: exploring collaboration and facilitation
IRAS ID
233798
Contact name
Katie Davis
Contact email
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Although research in the dementia care field is continually expanding, the voice of people living with the condition is often not at its centre, with few opportunities afforded for people with dementia to actively be involved as co-researchers. The main aim of this study, therefore, is to explore ways in which people living with dementia are involved in research, beyond that of being participants, and how this is facilitated.
To operationalise the study aim, this study will adopt three phases. The first phase, a survey of researchers who have carried out participatory research with people with dementia, will seek to explore how this kind of research is facilitated and what barriers, if any, may be present in working collaboratively with people living with dementia in research.
The second phase makes use of a co-operative inquiry methodology (Heron & Reason, 2006) which is an approach to participatory research that involves cycles of action and reflection through clearly defined phases. It is research ‘with’ people as opposed to research ‘on’ people. The co-operative inquiry, consists of a group of people living with dementia, their care partners and the researcher, and will seek to explore ‘stigma and representation’ of people living with dementia. This will involve the production of a play script. Whilst it has a long-established history, co-operative inquiry is an emerging methodology in the field of dementia research.
The third phase of the study will consist of semi-structured interviews with people living with dementia from two member involvement groups in the Northwest of England who are involved in the ESRC/NIHR Neighbourhoods and Dementia study. The interviews will seek to explore why people living with dementia become involved in research and what part they play, or want to play, in the process.
REC name
Wales REC 4
REC reference
17/WA/0264
Date of REC Opinion
11 Sep 2017
REC opinion
Favourable Opinion