An Overview of the National Dementia Strategy
15 August 2019
By Sara Pon
On June 17, 2019, the Government of Canada released A Dementia Strategy for Canada: Together we Aspire [National Dementia Strategy]. This strategy was created following several steps:
- In November 2016, the Senate of Canada released a report on dementia in Canada;
- In 2017, Parliament passed the National Strategy for Alzheimer’s Disease and Other Dementias Act, legislating the development of a national dementia strategy, and the creation of a ministerial advisory board;
- In May 2018, the Public Health Agency of Canada hosted a National Dementia Conference (our staff lawyer Valerie Le Blanc attended the conference and reported on the event in this blog post); and
- In April 2019, the Public Health Agency of Canada published the What We Heard: Informing a Dementia Strategy for Canada Report (the What We Heard Report) identifying themes and issues stakeholders raised at the 2018 conference.
In this blog post we:
- Highlight key aspects of the What We Heard Report;
- Summarize the national strategy;
- Make connections with the 2016 Provincial Guide to Dementia Care in BC; and
- Comment on what it means to incorporate a human rights approach into a dementia strategy.
In developing the National Dementia Strategy, the government completed consultations, including with people living with dementia, caregivers, researchers, among others, and conducted a National Dementia Conference. Here are some of the highlights from the What We Heard Report.
- Canadians want to live better with dementia, including better diagnosis, improved quality of life in later stages, and reduced stigma.
- There is a need for improved work environments and training for front-line health care providers such as personal support workers and health care assistants.
- More supports are needed for the family and friend caregivers, who often spend a great many hours caring to the detriment of their own financial, physical, and emotional well-being.
- Canadians feel it is especially important to include people with dementia in the research to ensure it is effective research.
- Research findings need to be put into practice and be accessible.
- Consultations also demonstrate a need for the strategy to apply a human rights lens, as some feel that the rights of people living with dementia are not being upheld, as there is a great deal of stigma and discrimination associated with the diagnosis which affects quality of life.
- It is important for the dementia strategy to focus on diversity, and the unique needs of people living in rural and remote communities and Indigenous peoples.
Vision and Principles Underlying the Strategy
The National Dementia Strategy’s vision is “[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.” The National Dementia Strategy sets out five principles which it used to create the strategy. These five principles are:
- Prioritizing Quality of Life
- Respect and Value Diversity
- Respect Human Rights
- Results Focused
The Three National Objectives
The first national objective is to prevent dementia. To prevent dementia:
- More research is needed to understand the full picture of what causes dementia and understand what factors increase the risk of dementia.
- Evidence-based interventions need to be developed.
- Both health care professionals and the public need more education on what the risk factors are, and how healthy lifestyles can reduce the risk of dementia.
- Research has shown that the physical and social environment can affect healthy lifestyles and the risk of dementia. This area needs more research and targeted intervention.
The second national objective is to advance therapies and find a cure for dementia. To advance therapies and find a cure:
- Setting research priorities and developing therapies need to be conducted in consultation with people living with dementia, and adapted with time.
- Dementia research also requires an influx of money and partnerships.
- Research needs to be focused on developing therapies and disseminating the research into clinical settings where they can be used to help people living with dementia.
The third national objective is to improve the quality of life for people living with dementia and their family and friend caregivers.
- Areas of focus include:
- Eliminating stigma associated with dementia;
- Creating more inclusive communities; and
- Improving supports for caregivers.
- Improving the quality of life for people living with dementia requires:
- Early diagnosis;
- Creation of better diagnosis procedures; and
- Creating more services throughout the disease course.
- Health care professionals, especially doctors, need more education on dementia.
The Five Implementation Pillars
The National Dementia Strategy sets out five pillars which the implementation of the National Dementia Strategy should be built on.
- Collaboration: the levels of government in Canada, organizations, researchers, and international partners must work together.
- Research and Innovation: collaboration is needed in funding and addressing research gaps and translating research into practice.
- Surveillance and Data: information needs to be shared between governments, and more public health data on dementia and who is at risk for it is needed.
- Information Resources: information on research findings, best practices, and available supports need to be accessible.
- Skilled Workforce: dementia care must be of high quality, which includes improving the education of health care providers and increasing the number of care providers.
Barriers to Care and Higher Risk Populations
The National Dementia Strategy notes that research is lacking in the area of what groups are at a higher risk of dementia or face additional or unique barriers to equitable care. The National Dementia Strategy seeks to enhance knowledge in these areas and aims to help people who face greater risk or additional barriers to equitable care. For example, the National Dementia Strategy notes:
- Indigenous people and people living with intellectual disabilities face both barriers to equitable care and a higher risk.
- People with existing health issues, older adults, and women are at a higher risk of dementia.
- Ethnic and cultural minorities, LGBTQ2, rural and remote communities, and people diagnosed with young onset dementia are some of the groups facing unique barriers to equitable care.
Providing health care and regulating health care professionals involved in dementia care are the responsibilities of provincial and territorial government. While the National Dementia Strategy will provide broad guidance to dementia research and care and support funding, the main work will be done by the provinces and territories. Some jurisdictions do have their own strategies or guides to dementia care, including BC. The Provincial Guide to Dementia Care in BC [2016 Provincial Guide] was released in 2016, updating the 2012 Provincial Dementia Action Plan for BC.
The 2016 Provincial Guide sets out four priority areas for planning services and supports in BC for people living with dementia and their caregivers.
- Increase public awareness and early recognition of cognitive changes
- Support people living with dementia to live safely at home for as long as possible, including caregiver support.
- Improve quality of dementia care in residential care, including palliative and end of life care.
- Increase system supports and adoption of best practices in dementia care.
While the 2016 Provincial Guide was developed before the National Dementia Strategy, the 2016 Provincial Guide does reflect similar goals, particularly in the area of improving the quality of life for people living with dementia. As the provinces will be conducting most of the work in the area of providing dementia care, and education of health professionals and the public, the province’s plan for dementia care is important to fulfilling the National Dementia Strategy’s goals.
Human Rights and Citizenship for People Living with Dementia
The academic literature on dementia and the What We Heard Report both stress the importance of considering the experiences of people living with dementia through a human rights and citizenship lens. In Canada, the right to be free from discrimination, including because of a disability, is enshrined in both human rights legislation (federal, provincial and territorial) and the Canadian Charter of Rights and Freedoms. The United Nations Convention on the Rights of Persons with Disabilities, to which Canada is a signatory, holds that a person should be able to fully participate in society and have a right to make their own decisions. The citizenship approach affirms that people living with dementia should be able to live free of stigma, and fully participate in society with respect for their rights, competencies, and abilities to participate in decision-making.[i]
The National Dementia Strategy does have the potential to enhance respect for the citizenship rights of people living with dementia. The National Dementia Strategy states that respect for human rights and quality of life are at the strategy’s foundation, and that improving quality of life for both the person living with dementia and their caregiver is important. Additionally, the National Dementia Strategy seeks to reduce some of the stigma and discrimination around dementia, both within the National Dementia Strategy and going forward through education of the public and health care providers. The emphasis on how the experience of dementia differs for different groups of people is also a critical step toward increasing citizenship for people living with dementia. Different people may require access to different services or supports.
Where the National Dementia Strategy may fall short in ensuring full engagement for people living with dementia is in its strong focus on evidence-informed research and results. The National Dementia Strategy seeks to focus on improving evidence-based best practices for dementia, which is a laudable goal. But focusing on areas more amenable to quantitative measurement and data collection—such as important factors like the number and effectiveness of treatments and supports, statistics on dementia, and funding of collaborative research—may pull focus away from the recommendations in the National Dementia Strategy which focus on daily quality of life and engagement in society. For example, two interventions which would greatly improve quality of life for people living with dementia are modifications to built environments, and public education to reduce stigma. This work has the potential to prevent discrimination and support people living with dementia to more fully engage in community. However, the success of such interventions is more difficult to measure, and may require a great deal of time and the involvement of multiple levels of government. We hope the National Dementia Strategy’s focus on results and data will not de-prioritize such work to enhance respect for the citizenship and inclusion of people living with dementia.
We are excited about the emphasis on respect for human rights found in the National Dementia Strategy. We encourage all agencies to consider what kinds of education and institutional changes are required to give life to this commitment, and we look forward to supporting communities and governments to bring a human rights analysis to issues impacting people living with dementia and their families. To get a flavour of what a human rights approach looks like, please see our recent report, Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia.
[i] Deborah O’Conner, Jim Mann, & Elaine Wiersma, “Stigma, discrimination, and agency: Diagnostic disclosure as an everyday practice shaping social citizenship” (2018) 44 J Aging Studies 45; Deborah O’Conner & Ann-Charlotte Nedlund, “Editorial Introduction: Special Issues on Citizenship and Dementia” (2016) 15:3 Dementia 285.