Evaluating the Extent of Participation of People Living With Dementia in Research

Abstract

Most research about dementia consults with carers, community workers, nurses or other health professionals, but rarely with people living with dementia (PLWD). This paper investigates why this is the case and documents the extent to which dementia research includes those with lived experience. We searched for studies reported in academic articles focussing on dementia that described using participatory methods. Approximately half of the studies we found were excluded because the purpose of the research was commercial (developing apps or other products) and comprised only superficial product testing with PLWD rather than seeking any insight into their lived experience. Other studies were excluded because for various reasons, most significantly not meeting the definition of participatory methodology we adopted from Cornwall and Jewkes (1995). Ultimately only 27 academic articles were included in the analysis. In each of these studies the seven stages of research we identified (conception; design; participant recruitment; data collection; analysis; validation and knowledge translation) were evaluated for participatory methods. We found only one study which undertook participatory methodology in all stages which was the intended purpose of the research. We found that recruiting research participants, undertaking data analysis or validation with PLWD was seldom done and conceiving the study with PLWD was the rarest of all. In most studies we identified that participatory research was limited to only two or three research phases: data collection scored highest, then dissemination of data and then design. We found that participatory research with PLWD was not often considered possible and that rationales for the lack of consultation, when given, were largely ethical, or because of resource and time constraints. We found however that certain environments and approaches were more hospitable to PLWD involvement. This article describes exemplary examples of participatory research in different stages of the research processes, documents the strategies used to enhance participation and recommends increasing participatory methodology so as to better understand the perspectives and insights of PLWD making assessments and recommendations more effective.