Improving the quality of life and care of persons living with dementia and their caregivers: more investments are needed

As health care researchers and practitioners working to improve the quality of life and care for persons living with dementia and as concerned citizens we would like to highlight the importance of the planned federal investment to support a national dementia strategy and also to emphasize that more is needed. This important work will require sustained collaborative efforts from a variety of stakeholders in addition to the federal government – provinces, voluntary agencies, post-secondary institutions, practitioners, researchers, and persons living with dementia, their caregivers/families and the general public.

Dementia touches the lives of many Canadians. It is estimated that over 400,000 Canadians are currently living with dementia and this number is expected to almost double within the next 15 years. It is estimated that approximately one in five baby boomers will develop dementia in their lifetime if we don’t act now to lower our risk of developing it (and there is emerging evidence that this is possible). Dementia has a profound impact on the person living with the condition, their family and friends, and the health and social care systems. Unless we develop more effective and efficient approaches by 2031, the combined Canadian health care system and out-of-pocket expenses for dementia is expected to increase to $16.6 billion. While much has been learned on how to deliver good care, we need to continue to support the creation and dissemination of new knowledge about dementia.

Most Canadian provinces have developed or are developing strategies and/or action plans for Alzheimer disease and other dementias. A national dementia strategy that builds on this experience will provide a compelling central vision that provides direction for mobilizing the resources needed to meet this health and social care challenge. In 2017, Parliament passed the “National strategy for Alzheimer’s disease and other dementias Act”. The federal Minister of Health, through the Public Health Agency of Canada, asked the Canadian Academy of Health Sciences to provide an evidence-informed and authoritative assessment to inform national dementia strategy priorities. In 2019, the report titled “Improving the quality of life and care of persons living with dementia and their caregivers” was published.

This assessment identified the following overarching themes: 1) Building on the rich Canadian experience in developing and implementing provincial dementia strategies; 2) Recognizing the centrality of engaging persons living with dementia and their caregivers in a meaningful and respectful manner; 3) Addressing dementia as a societal, health and social issue, emphasizing the complex combination of health and social needs of persons living with dementia and their caregivers; 4) Ensuring an adequately trained and supported dementia workforce is available to deal with current and anticipated demands; 5) Assuring an equitable balance in research investment across biomedical, clinical, health services, and social, cultural, environmental, and population health research and between creating and translating knowledge ; 6) Creating, seeking and utilizing evidence and best practices to implement the strategy in a coherent and practical way.

It will be important to assess the impact of investments and the strategy overall, in order to ensure that they meaningfully impact the quality of life and the quality of care of persons living with dementia, their caregivers and families.

Co-signing authors
Amélie Quesnel-Vallée, PhD, Canada Research Chair on Policies and Health Inequalities at McGill University. Director of the McGill Observatory on Health and Social Services Reforms.
Other authors of the CAHS report: Howard Bergman, MD, FCFP, FRCPC, FCAHS; David Hogan, MD, FRCPC; Janice Keefe, PhD; Carrie McAiney, Phd; Debra Morgan, PhD, RN, FCAHS; Sonya Kupka, MAdEd, RD.

The report can be found here:
Improving the quality of life and care of persons living with dementia and their caregivers – Canadian Academy of Health Sciences. https://www.cahs-acss.ca/improving-the-quality-of-life-and-care-of-persons-living-with-dementia-and-their-caregivers/
Améliorer la qualité de vie et les soins pour les personnes vivant avec la démence et leurs aidants. https://www.cahs-acss.ca/improving-the-quality-of-life-and-care-of-persons-living-with-dementia-and-their-caregivers/?lang=fr