Elderly man wearing a hat

Nearly half a million Canadians are living with dementia, and that number will grow as the population ages. The Schlegel-UW Research Institute for Aging (RIA) was awarded $2M in federal funding to lead two national projects that will advance research and drive innovation to enhance quality of life for persons living with dementia and care partners.

The Dementia Knowledge Hub project will facilitate collaboration and optimize the impact of community-based projects across the country that are funded under the Dementia Community Investment. The Dementia Surveillance System project will focus on enhancing the national dementia data system to improve our understanding of dementia and its progression. Both projects are funded by the Public Health Agency of Canada.

“The RIA is honoured to be awarded this funding and play a leadership role in these national dementia projects,” said Josie d’Avernas, RIA executive director. “These projects will allow us to understand dementia in ways we haven’t before in this country and drive practice and policy change so we can support all Canadians to live well with dementia.”

The Dementia Knowledge Hub will support community projects to build capacity in areas such as intervention research, evaluation and the engagement of persons living with dementia. A core component will be the development of a community of practice to enable projects from across the country to share information and collaborate. The Hub will share lessons learned and resources to help inform dementia policy and practice in Canada.

To advance this work, the RIA team is working closely with Professor Carrie McAiney, Schlegel Research Chair in Dementia at the RIA and University of Waterloo, and Professor Laura Middleton, RIA research scientist and associate professor at the University of Waterloo. The team will collaborate with experts, including persons living with dementia and care partners, from across Canada.

Middleton will also work with Schlegel Research Chair in Nutrition and Aging, Professor Heather Keller, on an additional project funded by the Public Health Agency of Canada to build the capacity of wellness advocates to support persons living with dementia and care partners.

The Dementia Surveillance System will use a holistic approach to expand data monitoring to include a comprehensive list of factors, including lifestyle, income, geographic location, and other health conditions.  The information gathered will improve our understanding of the range of experiences people have in developing dementia and as their dementia progresses. For the first time, there will be a detailed picture of dementia in Canada.

The surveillance system research team is led by McAiney and Dr. George Heckman, Schlegel Research Chair in Geriatric Medicine at the RIA and University of Waterloo. Heckman and McAiney will work together with researchers in dementia from 8 provinces as well as an Advisory Group that includes persons living with dementia and family care partners.

The voices of those with lived experience will be an integral part of both of these projects.

“If we want this work to be meaningful to people living with dementia, we must integrate their voices into everything we do,” says McAiney.

“We will benefit as a country by including the invaluable insights of people with lived experience as policies and practices are built out. By working in this way, we’ll optimize the relevance and impact of our efforts and investments.”

Media Contact:

Hilary Dunn-Ridgeway, Director of Communications
Schlegel-UW Research Institute for Aging
hilary.dunnridgeway@uwaterloo.ca