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Canadian Science Policy Centre | Panel 208 - The Dementia Challenge: Facing the Rising Tide

Panel 208 - The Dementia Challenge: Facing the Rising Tide

Conference Day: 
Day 1 - November 7th 2018
Takeaways and recommendations: 

The Dementia Challenge: Facing the Rising Tide

Organized by: Canadian Academy of Health Sciences, Eleanor Fast

Speakers: Carrie McAiney, PhD, Associate Professor, School of Public Health and Health Systems, University of Waterloo; Isabelle Vedel, MD, PhD, Assistant Professor, Department of Family Medicine, McGill University

Moderator: Howard Bergman, MD, FCFP, FRCPC, FCAHS, Chair, Panel for the Assessment of Evidence and Best Practices for the development of a Canadian Dementia Strategy, Canadian Academy of Health Sciences (CAHS)

Takeaways and recommendations

  • 1 in 8 baby boomers in Canada will likely develop dementia.

  • The healthcare system needs to be prepared to perform pre-symptomatic diagnostic tests.

Canadian Academy of Health Sciences Report

  • To advance the federal priorities under the 2017 National Strategy for Alzheimer’s Disease and Other Dementias Act, the Canadian Academy of Health Sciences (CAHS) was asked to provide an evidence-informed and authoritative assessment on the state of knowledge. The report is scheduled for release in January 2019 by the CAHS Panel for the Assessment of Evidence and Best Practices for the development of a Canadian Dementia Strategy.

  • The report will:

    • Highlight challenges, summarize public-policy responses, identify evidence-informed, and emerging best practices

    • Build on rich Canadian experience, including reviewing multiple provincial strategies

    • Recognize that this is a social, health, and societal issue

    • Ensure that engaging people living with dementia and their caregivers is done in a meaningful and respectful manner

    • Ensure an equitable balance in research investment

    • Create, seek out and use evidence and best practices to implement the strategy

    • Ensure implementation is flexible

Engaging people living with dementia

  • Engaging people who live with dementia takes various forms: care decisions, planning for the future, decision-making in their daily lives, advocacy for people with dementia, advising the creation of programs and services, and research.

  • Some want to be involved in their daily lives and care plans, others may want to be involved in advocacy, etc.

  • In research, they must be engaged as partners, not participants.

  • Engagement must be genuine and meaningful.

  • Often we turn to others – caretakers – to be proxies.

  • We must understand the impacts of engagement, and ensure diversity is considered.

  • The key is to engage the person living with dementia and do what we can to increase her or his wellbeing.

An implementation plan for dementia care

  • Limited capacity to adapt, innovate and improve is a challenge to effectively implementing a dementia strategy.

  • The cycle for a dementia implementation plan should be: develop plan, implement plan, evaluate processes and impact, and adapt if needed.

  • A case study from Quebec:

    • Alzheimer plan launched in 2009

    • 40 family medicine groups (2012-2016) were involved

    • Medicine groups were provided support (e.g. project managers, guidelines and training)

    • Processes (sustainability) and impact (quality of care, use of services) were evaluated

    • The plan was adapted and scaled up for the whole province

  • The federal/provincial relationship is an important challenge: Provinces are responsible for the management and deployment of the healthcare system, and a Canadian Dementia Strategy is national.

Caring for people living with dementia

  • People who provide home care to people living with dementia are part of an unregulated workforce. We need to improve training, skills and wages, so they know how to develop an effective care plan with the person.

  • There is some innovation in good practices in how to engage people with dementia: ask people with dementia what they need.

  • Innovation needs to be stimulated in clinical practice and government. Ministries tend to favour standardized approaches and metrics that can be measured and compared.

  • There will be different responses to what the impacts and benefits are of any strategy.

  • We need to consider various levels of impacts: the level of the individual and what is most beneficial for them, for their family, as both an organizational level and a system level.

  • We need to measure things that matter for various groups, which vary across groups.

  • There are two groups that need to be considered with any policy or intervention: those living with Alzheimer’s and their family caregivers.