In 2019, the Public Health Agency of Canada announced the launch of Canada’s first national dementia strategy, a milestone in our country’s efforts to help people affected by dementia and address the impact of dementia on social and health care systems.

The strategy focuses on advancing prevention and treatment for dementia, as well as improving quality of life for people living with dementia, care partners, and families.

Carrie McAiney, Schlegel Research Chair in Dementia with the Schlegel-UW Research Institute for Aging (RIA) and University of Waterloo, was part of a national panel of experts that informed the development of the strategy. She and five other experts produced a report for the Canadian Academy of Health Sciences (CAHS) outlining current knowledge, emerging ideas, and existing gaps related to dementia care in Canada. Their report served as a foundational resource as the Government of Canada built the national strategy.

As the strategy is put into action, the RIA is taking on a significant leadership role in two key projects.

Leading the Dementia Knowledge Hub

The Public Health Agency of Canada has launched an initiative called the Dementia Community Investment (DCI). The DCI funds community-based projects across the country aimed at enhancing the well-being of people living with dementia.

To support and connect all of these projects, the DCI has also funded a Knowledge Hub to facilitate collaboration and optimize impact. The RIA has been selected to lead the hub.

The RIA team is working closely with McAiney and RIA research scientist, Laura Middleton at the University of Waterloo. They will collaborate with other experts across Canada to support all DCI projects by helping to build capacity in areas such as intervention research, evaluation and the engagement of persons living with dementia, as well as identify gaps for consideration in future funding opportunities. The Knowledge Hub will also examine and share lessons learned across the country to help inform dementia policy and practice in Canada.

Leading the Dementia Surveillance Program

The RIA has also been selected to lead the enhancement of Canada’s dementia data system.

Known as the Enhanced Dementia Surveillance Program, this initiative aims to expand the type of data collected across the country. This information drives dementia policy and practice improvements.

McAiney and Dr. George Heckman, Schlegel Research Chair in Geriatric Medicine, will play key roles in this initiative.

“We are pleased that this is a priority for Canada and are proud to lead this effort,” says Heckman.

“There is increasing variability in how dementia presents and progresses. We need to learn more about the factors that influence people’s experience of dementia and how this experience changes over time. If we create a more comprehensive model of our understanding of dementia, we can improve care and prevention strategies, and can better plan for the future.”

Research leaders from eight provinces will collaborate to examine Canada’s current data system and develop recommendations to enhance the existing system. An enhanced dementia data system can enable policy makers, planners, researchers and others to monitor a comprehensive list of factors, including lifestyle, income, race/ethnicity, and other health conditions.

A common element across all of these initiatives is the engagement of people with lived experience with dementia. McAiney provided early leadership and guidance in building this approach into Canada’s strategy.

“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.”

These important new initiatives are a prime example of how the RIA drives collaborative research to co-design solutions that solve real-world problems and enhance quality of life and care for older adults across the country.