Embedding patient and public involvement in dementia research: Reflections from experiences during the ‘Journeying through Dementia’ randomised controlled trial

BERESFORD-DENT, J., SPRANGE, K., MOUNTAIN, G., MASON, C., WRIGHT, J., CRAIG, Claire and BIRT, L. (2022). Embedding patient and public involvement in dementia research: Reflections from experiences during the ‘Journeying through Dementia’ randomised controlled trial. Dementia, 21 (6), 1987-2003.

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Abstract

Background: The involvement of people with a diagnosis of dementia in patient and public involvement and engagement (PPIE) in research is an emerging field in the delivery of studies. Researchers need to understand and use the learning derived from various projects so that this growing body of knowledge can be applied in future research. Objective: To embed PPIE throughout a randomised controlled trial of a psychosocial intervention called Journeying through Dementia. We identify and discuss the approaches to involvement that worked well and those where improvements were indicated. Design: The Guidance for Reporting Involvement of Patients and the Public Short Form (GRIPP2-SF) is used to describe and critically appraise the approaches taken and the impact of PPIE involvement upon study processes, the study team and those people with dementia and their supporters who acted as advisors. Findings: The involvement of people with a diagnosis of dementia and supporters as study advisors improved the accessibility and relevance of the research for people living with dementia. It also highlighted issues that researchers may have otherwise overlooked. Successful engagement of people with dementia and their supporters in the study was associated with staff skills and particularly use of techniques to scaffold meaningful involvement, as well as participants’ memory and cognitive capacity. However, embedding robust and meaningful involvement processes required significant time and resources. Discussion: We propose that certain research processes need to be adapted to be accessible and appropriate for people living with dementia. Recruitment of PPIE advisors needs to reflect population diversity. There also needs to be greater parity of voice between people with lived experience of dementia and researchers. These steps will increase the impact of PPIE in research and improve the experience for those who volunteer to be PPIE advisors.

Item Type:	Article
Uncontrolled Keywords:	patient and public involvement and engagement; dementia; research; dementia; patient and public involvement and engagement; research; Dementia; Humans; Patient Participation; Humans; Dementia; Patient Participation; Geriatrics; 1103 Clinical Sciences; 1110 Nursing; 1702 Cognitive Sciences
Identification Number:	https://doi.org/10.1177/14713012221106816
Page Range:	1987-2003
SWORD Depositor:	Symplectic Elements
Depositing User:	Symplectic Elements
Date Deposited:	31 Aug 2022 10:52
Last Modified:	31 Aug 2022 12:43
URI:	https://shura.shu.ac.uk/id/eprint/30652

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