Dementia Care Research and Psychosocial Factors

Area of Science:

• Neuroscience
• Public Health
• Gerontology

Background:

• Limited research exists on Canadian public perceptions of dementia disease-modifying treatments (DMTs).
• Existing discourse focuses on drug development, health system readiness, and healthcare professional views.
• This study explored experiences and perceptions of Canadians affected by dementia regarding DMTs.

Purpose of the Study:

• To understand public perceptions of disease-modifying treatments (DMTs) for dementia in Canada.
• To explore the experiences of people living with dementia and their care partners with potential DMTs.
• To identify key considerations for the implementation of DMTs in Canada.

Main Methods:

• Focus groups were conducted in British Columbia and Ontario, Canada, between February and December 2024.
• Participants included individuals living with dementia and their care partners, some enrolled in DMT clinical trials.
• Thematic analysis was used to analyze data from 90-120 minute focus groups exploring treatments, risk tolerance, and support needs.

Main Results:

• Four key themes emerged: equitable access (financial, geographic, care partner support), risk tolerance (varying by individual and disease stage), need for clear information for decision-making, and DMTs as a source of hope.
• Participant experiences varied based on dementia progression.
• Alzheimer Societies of BC and Ontario were identified as trusted sources for DMT navigation support.

Conclusions:

• Findings highlight priority areas for DMT availability in Canada, emphasizing patient and care partner involvement.
• Developing DMT care pathways with people with lived experience is essential for accessibility and meaningful benefits.
• Ensuring DMTs extend quality of life and improve care quality is paramount.