Dementia Care Research and Psychosocial Factors

Area of Science:

• Gerontology
• Public Health
• Community Health

Background:

• Canada's National Dementia Strategy prioritizes enhancing the quality of life for individuals with dementia and their caregivers.
• The Dementia Community Investment (DCI) initiative funds community-based projects to improve quality of life for those affected by dementia.
• The Canadian Dementia Learning and Resource Network (CDLRN) was established to support DCI projects through education and capacity building.

Purpose of the Study:

• To describe the co-design and implementation of the Canadian Dementia Learning and Resource Network (CDLRN) with meaningful engagement from people living with dementia and care partners.
• To highlight the principles of Authentic Partnership guiding the CDLRN's collaborative approach.
• To demonstrate how lived experience shapes network structures, processes, and activities.

Main Methods:

• Co-design of CDLRN structures and processes involving people living with dementia as project representatives and advisors.
• Establishment of a Community Advisory Committee with members living with dementia for strategic guidance.
• Inclusion of people living with dementia in CDLRN events, activities, and evaluation teams.

Main Results:

• Engagement of people with dementia and care partners influenced the network's name, website, communications, and event planning.
• The CDLRN Community Advisory Committee ensures decision-making aligns with the priorities of people living with dementia.
• People with dementia actively participate in and present at CDLRN forums, panels, and working groups.

Conclusions:

• Authentic partnership with people living with dementia and care partners is integral to the CDLRN's success.
• This collaborative approach has created a flexible and responsive knowledge hub tailored to the needs of DCI-funded projects.
• The CDLRN model demonstrates effective strategies for involving people with lived experience in dementia support networks.