Healthcare Provider Experiences Delivering Dementia Care in Indigenous Communities: Challenges and Recommendations
Carey Gleason, Nickolas Lambrou, Melissa Blind, Dana Ketcher, Elizabeth Weigler, Melinda Dertinger, January Johnson, Alexis Mason, Susan L Ninham, Red Lake Nation Ojibwe, Karen Pitawanakwat, Collette Pederson, Lois Metoxen Strong, Marlene Summers, Rhonda Trudeau, Wayne Warry, Kristen JacklinAbstract
Background and Objectives
Little is known regarding the effects of Alzheimer’s disease and related dementias (AD/ADRD) in in American Indian and First Nation (AI/FN) communities in the US and Canada. Yet, research suggests FN populations in Canada experience 34% higher dementia rates and over half of US-based Indigenous adults demonstrate incident cognitive impairment, including dementia due to AD and/or cerebrovascular disease. Already higher than the general population, rates will increase as Indigenous populations age. The Indigenous Cultural Understandings of ADRD-Research and Engagement (ICARE) project was established to understand lived-experiences of dementia in AI/FN communities around the Great Lakes. We report themes describing practitioner experiences providing dementia care in selected US and Canadian Indigenous communities.
Research Design and Methods
Healthcare practitioners (n = 14) providing care in Indigenous communities were interviewed by community-based researchers using semi-structured guides exploring a range of topics. Thematic analysis was used to identify challenges and recommendations to improve care. Trustworthiness checks included reflexivity, consensus, prolonged engagement, member checking and audit.
Results
Thematic analysis yielded six superordinate themes. Provider-perceived challenges included: 1) Limited Resources for Providing Dementia Care, 2) Need for Caregiver-focused Preparation and Support, 3) Communication and Relationship Gaps, 4) Low-levels of Community Dementia-related Awareness, Education and Engagement. Provider recommendations were characterized as: 5) Increase Dementia-related Awareness, Education and Engagement, 6) Invest in Dementia Caregiver Support and Community Strengths.
Discussion and Implications
Findings were contextualized with post-colonial and relational care frameworks. Providers described relevant challenges and provided culturally safe and equitable strategies to improve dementia care outcomes.