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

Research output: Contribution to journalArticle

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JournalSocial Research Practice
DateAccepted/In press - 9 Dec 2016
DateE-pub ahead of print - 1 Jan 2017
DatePublished (current) - 1 Jan 2017
Volume3
Number of pages12
Pages (from-to)3-14
Early online date1/01/17
Original languageEnglish

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.

Bibliographical note

© 2017, The Author(s) .This is an author-produced version of the published paper. Uploaded in accordance with the publisher’s self-archiving policy. Further copying may not be permitted; contact the publisher for details.

    Research areas

  • Dementia, Research, INVOLVEMENT

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