Developing an Ethnographic Community-Based Participatory Research Dementia Study with Diverse Indigenous Populations: Indigenous Cultural understandings of Alzheimer’s disease and related dementias – Research and Engagement (ICARE) project

Background: Dementia diagnoses have been increasing in Indigenous populations for over a decade and have now surpassed rates in non-Indigenous populations in both Canada and the U.S. Prevalence rates of Alzheimer’s Disease and Related Dementias (ADRD) are approximately 3 times higher in Indigenous populations compared to White populations, with a 10-year earlier onset. The ICARE project (NIH –5R56-AG-62307-2) qualitatively explores the impact of ADRD in Indigenous populations across four diverse sites in Canada and the United States. Method: We used a community-based participatory research (CBPR) approach and a two-eyed seeing framework to establish research partnerships with four Indigenous communities/regions: 7 Anishinaabe First Nations on Manitoulin Island, Ontario Canada; Red Lake Tribal Nation, Minnesota; Grand Portage Tribal Nation, MN; and the Oneida Nation, Wisconsin. The community engagement strategy supported the infrastructure needed to conduct dementia research in a culturally safe and appropriate way that respects Tribal Sovereignty. Result: Indigenous community-based researchers were hired at each site and each underwent research training designed by the ICARE team. With guidance from local leadership, we established 8–12-member community advisory groups at each site to serve as partners to guide the research. We collected preliminary ethnographic data on social determinants of health, demographics, community health, aging and dementia specific services. We demonstrated feasibility with pilot data collection of key informant interviews with Traditional Knowledge Keepers, Administrators, and Providers (n = 54) and sequential focus groups with local health care staff and formal caregivers that work with Indigenous older adults (n = 17). Conclusion: NIH/NIA R56 funding resulted in the establishment of the community-based infrastructure to support on-going ADRD research in the four diverse communities. We demonstrated the feasibility of supporting community-engaged dementia research partnerships with Indigenous communities who have differing cultural, political and historical contexts. This foundation is supporting the expansion of ICARE into a 5-year ethnographic research study aimed at creating a foundational ethnographic database of AI/FN lived experience of ADRD across the disease trajectory that can be examined to inform the creation of culturally appropriate and safe approaches to improve dementia diagnostics, care, and outreach (NIH-R01-AG-62307-2).