Shaping the Research Agenda

In early 2020, the Canadian Consortium on Neurodegeneration in Aging (CCNA) launched a new program to bring voices of lived experience into the CCNA research process. The program, called Engagement of People with Lived Experience of Dementia (EPLED), enables persons with dementia and their care partners to provide meaningful insight and counsel to CCNA research teams.

Up until relatively recently, researchers around the world have largely ignored the perspectives of people with dementia, failing to take into account that their insights, abilities and diverse perspectives can lead to more effective studies and outcomes. 

The EPLED advisory group consists of 16 people of different backgrounds and geographical locations in Canada — some of whom are living with dementia, and others who are (or have been) care partners to loved ones living with dementia.

Since their very first meeting in July 2020, members of the EPLED team have advised on a number of research projects, contributed to academic papers, served on dementia discussion panels and more (see sidebar for a longer list of achievements).

Dementia Connections had the honour of speaking to 12 of the 16 EPLED members about the work they’re doing as advisors and what it means to them. Here’s just some of what they had to say: