Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives

Front Dement. 2024 Jul 5:3:1421737. doi: 10.3389/frdem.2024.1421737. eCollection 2024.

Abstract

This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.

Keywords: advisory group; aging; dementia; engagement in research; health research; lived experience of dementia; multi-stakeholder; patient and public engagement.

Grants and funding

The author(s) declare that financial support was received for the research, authorship, and/or publication of this article. The Canadian Consortium on Neurodegeneration in Aging (CCNA) was supported by a grant from the Canadian Institutes of Health Research with funding from several partners (CNA-163902). The Engagement of People with Lived Experience of Dementia program was funded by the Alzheimer Society of Canada as part of their commitment to CCNA. JB and KM were supported by the Walter & Maria Schroeder Institute for Brain Innovation and Recovery.