Inside Canada’s national dementia strategy

Where legislation meets implementation, Dr. Carrie McAiney champions the involvement of those living with dementia, and discusses the challenges that lie ahead

By Jordan Flemming University Relations

Dementia is a significant public health issue in Canada. According to the Alzheimer Society, an estimated 600,000 Canadians are living with dementia in 2023. As our population ages, the number of Canadians with dementia is projected to exceed 1,000,000 by 2030.

The World Health Organization monitors countries with dementia strategies, recognizing dementia as a public health and societal concern. Canada, despite being one of the world’s leading economies, lacked a national dementia strategy, prompting pressure for action.

In 2017, the Canadian government enacted the National Strategy for Alzheimer’s Disease and Other Dementias Act, signaling a significant step toward addressing this pressing issue. The Public Health Agency of Canada (PHAC) took the lead in shaping and implementing the national strategy.

To inform their work, a critical evidence-based assessment by an expert panel was commissioned to better understand the dementia landscape and the state of the literature. Dr. Carrie McAiney, a professor and Schlegel Research Chair in Dementia from the University of Waterloo’s Faculty of Health was a member of the panel.

The legislation specified a range of key areas for focus within the national strategy, such as the health and social care system, support for family and friend care partners, workforce development and research.

However, McAiney noted a gap existed in the legislation addressing the role of individuals living with dementia in shaping their care and decision-making processes.

"One of the missing components was the role that individuals living with dementia could assume and the importance of involving them," McAiney says. "They should have a say not only in decisions about their own care but also in other matters and activities that directly impact their daily lives. This includes developing programs and support services, directing research efforts and addressing what matters most to those living with dementia. It’s about unpacking these aspects and giving them the attention they deserve."

Her contribution was instrumental, and this perspective became a cornerstone of the final report - incorporating the voices of those directly affected by dementia.

The development of the assessment involved an examination of provincial dementia strategies, seeking commonalities to ensure alignment with the federal approach. It also required extensive literature review and synthesis, all undertaken by the panel. They carefully considered challenges, existing public policy, responses from governments and current research findings in each of the strategy’s key focus areas.

"Research funding in Canada, especially for dementia, is insufficient compared to other chronic conditions, and there’s a need for comprehensive work in both fundamental and applied research areas," McAiney says. "Additionally, combating stigma and promoting education and awareness is so very important to support individuals living with dementia and encourage them to seek help."

Since the strategy’s enactment, PHAC has spearheaded its implementation with allocated funding.  Various activities have been financially supported, including community initiatives, awareness campaigns, data collection and guideline development. Communities nationwide have received funding to execute strategy-aligned projects, ranging from raising dementia awareness to aiding family caregivers and individuals with dementia.

"I’ve been involved in a project called Forward with Dementia. It aims to provide support for individuals post-diagnosis, offering not just information and resources but also hope." she says. "We want them to understand that living with dementia doesn’t mean giving up but rather finding ways to live their best lives. This involves supporting their well-being and encouraging them to stay engaged in healthy activities, maintain social connections and pursue their interests for as long as possible."

While progress has been made, the future remains uncertain after the allocated funding is expended. McAiney pointed out that questions loom about what comes next in the strategy’s evolution.

"Dementia’s impact is vast and complex. We must take a balanced approach, addressing a wide array of issues without overextending our resources. Adaptation and evaluation planning are crucial to tailor the strategy to Canada’s diverse communities," McAiney expresses.

McAiney’s work in shaping Canada’s national dementia strategy is a testament to the power of evidence-informed, person-centred approaches. By placing people living with dementia at the heart of the strategy, addressing stigma and adopting a comprehensive, adaptable approach - Canada is making significant strides in championing dementia care.

Carrie McAiney - School of Public Health Sciences