Canada's First National Dementia Strategy: A Historic and Long Overdue Moment for Our Nation

June 26, 2019

Canada’s Minister of Health released Canada’s first ever National Dementia Strategy last week, A Dementia Strategy for Canada: Together We Aspire. “This is a historic and long overdue moment for Canada,” says NIA Director of Health Policy Research, Dr. Samir Sinha. “We have lagged behind other major countries in being one of the last to develop a strategy, but have made up for this with a funded, collaborative, and thoughtful strategy developed with the input of experts, including, most importantly, many of those living with and affected by dementia.”

According to the report, the strategy was crafted by governments, researchers, health professionals, people living with dementia, and caregivers. The strategy includes a $50M investment over five years, first announced in the 2019 federal budget. There was also $31.6M over five years provided by the Canadian Institutes of Health Research (CIHR) to lead collaborative research on dementia through a national dementia research consortium known as the Canadian Consortium on Neurodegeneration in Aging (CCNA).

What is the strategy?

The National Dementia Strategy sets out a vision to achieve, “a Canada in which all people living with dementia and caregivers are valued and supported, quality of life is optimized, and dementia is prevented, well understood, and effectively treated.”

There are five principles set out to inform all elements of the strategy and the strategy calls on all governments and stakeholders to utilize these principles when working on dementia.

These are: 

1.   Prioritizing quality of life: where actions taken to implement the strategy prioritize the wellbeing of people living with dementia and caregivers.

2.   Respect and value diversity: where actions and initiatives undertaken by all partners maintain an inclusive approach, with special consideration given to those most at risk or with distinct needs in support of greater health equity.

3.   Respect human rights: where actions taken under the strategy respect the human rights of those living with dementia and reflect and reinforce Canada's domestic and international commitments to human rights.

4.   Evidence-informed: where partners implementing the strategy engage in evidence-informed decision making, taking a broad approach to gathering and sharing the best available knowledge and data.

5.   Results-focused: where partners maintain a results-focused approach to implementing the strategy and tracking progress, including evaluating and adjusting actions as needed.

There are three national objectives outlined:

1.   Prevent dementia

2.   Advance therapies and find a cure

3.   Improve the quality of life for people living with dementia and their caregivers

There are five pillars that are considered essential to the implementation of the strategy: collaboration, research and innovation, surveillance data, information resources, and a skilled workforce (includes researchers and care providers who interact with people living with dementia).

What is Dementia and why do we need a strategy?

Dr. Samir Sinha’s report for the Government of Ontario, Living Longer, Living Well, defines dementia as a progressively debilitating disease that erodes cognitive and functional abilities, noting that Alzheimer’s disease is the most common form of dementia.

In Canada, there are over 419,000 people over the age of 65 that have been currently diagnosed with dementia. We see that number increasing every year. It has been further estimated that approximately over 78,000 older adults (aged 65 and over) are being newly diagnosed per year in Canada.

In Living Longer, Living Well, Dr. Sinha notes that when the cognitive and functional impairments of dementia advance, more intensive care and supports will be required. As the prevalence of dementia increases, so does the demand for long-term care and the overall resources of our health care system. Dr. Sinha also notes that as older adults with dementia remain living in the community, increased investment in community support services like adult day programs, respite services, mental health services, and long-term care supports, including home care and care in nursing homes will be required.  These services will need to be tailored to older adults at every stage of the disease. For example, in the more advanced stages of dementia, some individuals for whom English isn’t their first language, revert to their original language, which creates additional challenges in providing care. Therefore, given that only 58 per cent of Canadians report English as their original spoken language, it will be important to address the evolving linguistic needs of Canadians living with dementia.

Consideration must also be given for the impact on the mental health of unpaid caregivers who are often family members and friends of those living with dementia. Approximately one third of family caregivers of people with Alzheimer’s and other forms of dementia report having symptoms of depression. Caregivers, of course, provide a substantial amount of care for older Canadians, and the challenges can often be that much greater in cases of dementia. Research from the Canadian Institute for Health Information (CIHI) finds that unpaid caregivers of older adults with dementia provide more hours of care and experience higher levels of distress (45%) than those providing care to individuals without dementia (26%).

Looking at the growing impact of dementia on the health care system, A Dementia Strategy for Canada notes that the projected total annual heath care costs and out-of-pocket costs for Canadians with dementia will double from $8.3 billion in 2011 to $16.6 billion by 2031. This number doesn't take into account the value of care that unpaid caregivers provide on an annual basis as well. It is estimated that caregivers for people with dementia paid $1.4B in out of pocket costs in 2016. It is clear that a dementia strategy for Canada is long overdue.

What will the impact be on Canadians?

The National Dementia Strategy’s three main objectives are very closely tied to their expected impact on Canadians in supporting Canadians in the prevention of dementia, working towards finding a cure, and leading to improved quality of life for people living with dementia and caregivers.

Preventing Dementia

The National Dementia Strategy plans to support the further development of our understanding of how dementia can be prevented and share information with Canadians on how they can reduce their risk of developing dementia or delay the onset of dementia.

There are certain behaviours that that could reduce or increase the chance of dementia. For example, behaviours such as healthy eating and exercise can reduce your risk, while smoking and hypertension increase your risk of developing dementia. Through this strategy, the goal is to better understand the risk factors in order to educate Canadians on how to prevent dementia. In addition to preventing dementia, the strategy aims to investigate ways to delay the onset of dementia.

According to the report, studies suggest delaying the onset of dementia could significantly decrease the number of dementia cases in subsequent years, improve quality of life, and reduce the overall costs of care (personal and societal). Indeed, improved levels of educational attainment, decreasing rates of smoking and improved treatments around vascular health issues have led to many fewer Canadians living with dementia today compared to the number that were expected to be living with dementia based on our prevalence rates from earlier decades.

Four areas of focus are highlighted in the report to support prevention:

  1. Advance research to identify and assess modifiable risk and protective factors

  2. Build the evidence base to inform and promote the adoption of effective interventions

  3.  Expand awareness of modifiable risk and protective factors and effective interventions

  4. Support measures that increase the contribution of social and built environments to healthy living and adoption of healthy living behaviours

Finding a cure

The strategy aims to improve the understanding of dementia to find ways to prevent the condition but also find a cure. There are five areas of focus in advancing this goal outlined in the report:

  1. Establish and review strategic dementia research priorities for Canada

  2. Increase dementia research

  3. Develop innovative and effective therapeutic approaches

  4. Engage people living with dementia and caregivers in the development of therapies

  5. Increase adoption of research findings that support the strategy, including in clinical practice and through community support

The strategy also looks at leveraging a variety of approaches to fund dementia research and increase the impact of research investments through methods such as public-private partnerships.

Improving the quality of life for people living with dementia and their unpaid caregivers

Of Canada’s 8.1 million unpaid caregivers, approximately 486,000 or 6% are caring for an individual living with dementia.  Given that they often devote more time and personal expense towards their caregiving duties, caregivers of people with living with dementia often have unmet respite care needs and need better access to in-home, community-based and emergency respite care options, better access to financial supports, and finally, for those still working,  more flexible working options and other employer-based supports.

The government report has 5 areas of focus for improving quality of life for people living with dementia and their unpaid caregivers:

  1. Eliminate stigma and promote measures that create supportive and safe dementia-inclusive communities

  2. Promote and enable early diagnosis to support planning and action that maximizes quality of life

  3. Address the importance of access to quality care, from diagnosis through end-of-life

  4. Build the capacity of care providers, including through improved access to and adoption of evidence-based and culturally appropriate guidelines for standards of care

  5. Improve support for family/friend caregivers, including through access to resources and supports

What are the next steps?

While the creation of this strategy is a historical moment for Canada, it’s just the beginning. It is a blueprint for much that needs to be done, and there is a long road ahead in turning this plan into actionable items that will directly benefit Canadians living with and affected by dementia. The federal government’s strategy and funding will be most effective if coordinated with provincial and territorial actions. Some experts have noted that the $50M funding is a good start, but likely nowhere near sufficient to address the overall dementia-related challenges that lie ahead for Canada. Ontario’s Dementia Strategy launched in 2017, by contrast, was to provide $101M over three years with an annual ongoing proposed investment of $50M thereafter. Dr. Samir Sinha says, “as a Member of the federal government’s Ministerial Advisory Board on Dementia, we know now that the work has only just begun, and the role of organizations like the NIA and the Alzheimer Society of Canada will be crucial to ensuring we turn this strategy into noteworthy actions and demonstrable progress.”

The National Institute on Ageing is a Ryerson University think tank focused on the realities of Canada’s ageing population. We are Canada’s only think tank dedicated to policy solutions at the intersections of healthcare, financial security, and social well-being. Through our work, our mission is to enhance successful ageing across the life course and to make Canada the best place grow up and grow old.

By Arianne Persaud, Communications and Public Affairs Manager, National Institute on Ageing | Email: arianne.persaud@ryerson.ca. Follow us on Twitter and sign up for our mailing list.

Allan McKee