Removing the 'gag': involving people with dementia in research as advisers and participants

BROOKS, Jennifer, GRIDLEY, Kate and SAVITCH, Nada (2017). Removing the 'gag': involving people with dementia in research as advisers and participants. Social Research Practice, 3-14.

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Abstract

People with dementia are often excluded from taking part in research because of perceived difficulties in consent, capacity and communication. We argue that involving people with dementia in research is important, and describe how we involved people with dementia as both advisers and participants in research about the use of life story work. Researchers worked in partnership with Innovations in Dementia, who supported a network of advisers with dementia. Focus groups were arranged to ensure meaningful contributions by people with dementia. It was difficult to use standardised quality-of-life measures, and we describe the challenges faced with capacity and consent, recruitment and selection, and data collection. We suggest there is a need for (a) new tools for measuring quality of life of people with dementia which do not require participants to respond in prescribed ways, and (b) ethics and consent processes which are appropriate for non-medical research and which facilitate the involvement of people with dementia.

Item Type: Article
Uncontrolled Keywords: qualitative research, dementia
Research Institute, Centre or Group: Sociology, Politics and Policy Research Group
Related URLs:
Depositing User: Jennifer Brooks
Date Deposited: 09 Dec 2016 16:49
Last Modified: 14 Feb 2017 16:11
URI: http://shura.shu.ac.uk/id/eprint/14245

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