Lead: Jennifer Bethell
Program Managers: Ellen Snowball and Emma Lanza
The Engagement of People with Lived Experience of Dementia (EPLED; www.epled.ca) is an innovative CCNA program initiated in 2019, in which we have brought people with cognitive impairment and their care partners into many aspects of CCNA’s research and knowledge mobilization.
As part of the Research Support Hub, EPLED will:
- Support persons with dementia and care partners to be actively involved in research
- Work with researchers and trainees associated with CCNA to develop novel mechanisms and formats to further this collaboration
- Advance methods of patient engagement in research on dementia.
EPLED will use learnings from the first Advisory Group of PWLED, which was active from 2019-2024, to renew and expand the Advisory Group structure and membership. EPLED has recruited Advisory Group members from across Canada to maximize diversity of lived experience of dementia, including in different roles (i.e., people living with dementia or caregivers) and demographic characteristics. Visit the EPLED website to meet them.
EPLED developed a process for recruiting and onboarding new members in the Advisory Group, and will develop resources for EPLED Advisory Group members and researchers that will guide engagement, including updated role profiles, and a compensation framework that is aligned with other Canadian guidance.
- For more information on this program, visit the EPLED Website
- Grant writing: resources on how to engage people with lived experience in your research
- EPLED in Research Reference List
Learn about our integration of lived experience perspectives in research meetings: