Public Health

Area of Science:

• Indigenous Health Research
• Dementia Care
• Community-Based Participatory Research

Background:

• Engaging Indigenous individuals with dementia and their families in research and policy requires specific, intentional strategies.
• Partnerships with Indigenous communities necessitate a different approach to engagement compared to standard research practices.
• Upholding Indigenous self-determination is paramount throughout the research process.

Purpose of the Study:

• To outline the importance of rigorous and intentional approaches for engaging Indigenous people living with dementia and their families in research and policy.
• To highlight the distinctions between federal research requirements and community-led Indigenous ethical principles.
• To present examples of commitment to Indigenous self-determination in dementia research.

Main Methods:

• Consideration of federal research requirements (Tri-Council Policy Statement) and community-led Indigenous ethical principles.
• Application of distinctions-based approaches: OCAP® (Ownership, Control, Access, and Possession) for First Nations, Métis research principles, and Inuit research principles.
• Inclusion of Indigenous people with lived experience of dementia at all research stages: design, data collection, analysis, and knowledge mobilization.

Main Results:

• Authentic engagement requires multi-level involvement to preserve self-determination.
• Community-led ethical principles (respect, reciprocity, relevance, responsibility) guide ethical research relationships.
• Successful engagement involves ceremony, traditional Knowledge Keepers, protocols, and co-production of research and knowledge.

Conclusions:

• Genuine relationships, embedded within communities and including people with dementia, are foundational to ethical research.
• Upholding Indigenous self-determination is critical when conducting research with Indigenous communities.
• Co-produced and community-owned research ensures relevance and respect for Indigenous knowledge and protocols.