Indigenous Cultural Understandings of Alzheimer's Disease and Related Dementias - Research and Engagement (I-CARE)

Project Summary/Abstract This project, titled the Indigenous Cultural-understandings of Alzheimer’s – Research and Engagement (ICARE) focuses on the urgent need to address the increasing burden of Alzheimer’s disease and related dementias (ADRD) in American Indian (AI) and First Nations (FN) populations. Our central hypothesis is that culture and community-specific context shape ADRD illness experiences in Indigenous populations significantly enough to create distinct impacts of ADRD requiring culturally tailored approaches to diagnosis, care and education. Our goal is to create a foundational ethnographic database of AI/FN lived experience of ADRD that can be examined to inform the creation of culturally appropriate and safe approaches to improve dementia diagnostics, care and outreach. Our findings will inform our longer-term goal to create culturally safe clinical guidelines and dementia diagnosis and care tools for North American Indigenous populations. AI/FN ADRD rates are approximately three times higher, with a 10-year earlier onset, compared to majority populations. Higher rates of co-morbidities and limited access to social, economic, and health resources increase Indigenous health disparities. Culture and community context influence Indigenous peoples’ experience with dementia and culturally grounded approaches/resources increase awareness and improve outcomes. Currently, there is little information to guide culturally appropriate efforts to address ADRD. Using community-based participatory research (CBPR), ICARE engages AI/FN communities in Minnesota, Wisconsin and Ontario. We will undertake a CBPR qualitative ethnographic examination of the AI/FN lived experience across the illness trajectory including: cultural understandings of ADRD; experiences with diagnosis and care; and AI/FN community strengths and challenges. Specific methods include participant observation and semi-structured in-depth interviews with people with dementia (PWD), caregivers, and healthy seniors. Our qualitative analytic approach incorporates both biomedical and Indigenous understandings of ADRD. Our research has three specific aims. First, we will document and examine the lived experiences of ADRD across the disease trajectory in 3 diverse AI/FN regions (Red Lake Nation and Grand Portage, MN; Oneida Nation, WI; Manitoulin Island, ON) and identify cultural, health systems, and community factors influencing ADRD diagnostic and care pathways for PWD. Second, we will use this ethnographic data to delineate AI/FN specific explanatory models of ADRD and understandings of ADRD Quality of Life, diagnosis and staging to identify appropriate approaches to diagnose and assess ADRD in AI/FN populations. Third, we will conduct collaborative knowledge translation of ethnographic knowledge into culturally appropriate health promotion/education tools (fact sheets, videos or training modules) to respond to community needs. This study represents an important step in identifying effective, culturally-grounded approaches to address dementia- related inequities in AI/FN populations.