Engagement of people with lived experience of dementia advisory group and cross-cutting program: reflections on the first year

Abstract

Plain English summary In this paper, we describe the development of the Canadian Consortium of Neurodegeneration in Aging (CCNA) Engagement of People with Lived Experience of Dementia (EPLED) cross-cutting program and the first year of the EPLED Advisory Group. EPLED was created to build opportunities for patient engagement in the CCNA’s research on dementia. People living with dementia and current/former friends, family and care partners were recruited from across Canada to join the Advisory Group. In the first year, the Advisory Group met seven times formally, four times informally, developed a website, engaged with CCNA research projects, participated in CCNA “Central” activities and formulated an evaluation plan. Challenges included the impacts of the COVID-19 pandemic, online meetings, and differing expectations and priorities. Lessons learned and reflections on the importance of engagement are discussed in the context of research on dementia and from the perspectives of researchers and Advisory Group members.

Keywords

• Patient and public engagement
• Dementia
• Aging
• Health research
• Lived experience of dementia
• Multi-stakeholder