Engaging People With Lived Experience of Dementia in Research: Perspectives From a Multi-disciplinary Research Network

Abstract

Background

Patient and public involvement/engagement in research on dementia is not new, but it is becoming increasingly common. The objective of this study was to describe researchers’ knowledge, attitudes, and activities related to engaging people with lived experience of dementia in research, and how these differ by research theme.

Methods

Data were from an online, anonymous survey of research-ers within the Canadian Consortium on Neurodegeneration in Aging.

Results

Of the 84 researchers who completed the survey (response rate: 27%), 89% agreed they understood the meaning of en-gaging people with lived experience in research, although this was lower among biomedical researchers. Almost all (93%) agreed that people with lived experience could con-tribute meaningfully to research, and nearly two-thirds were already incorporating engagement in their research. Some engagement practices reported differed by research theme. Irrespective of the type of research they conduct, researchers were most often motivated by improving the relevance and quality of their research.

Conclusions

These findings support an optimistic outlook for engaging people with lived experience of dementia in research, but identify differences across research themes. Understanding approaches to incorporate, evaluate, and adapt engagement activities across research disciplines are needed to enable researchers, as well as others involved in research, to develop and target strategies for patient and public involvement/en-gagement in research on dementia.