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

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Our research aims to improve the lives of American Indian/First Nations (AI/FN) persons with dementia (PWD) by examining the impact of the disease on patients, families and communities. This community-based participatory research (CBPR) engages AI/FN communities in Ontario, Wisconsin and Minnesota. We will collect and analyze qualitative data about the lived experience of Alzheimer’s and its Related Dementias (ADRD) using methods successfully established in our previous research, including participant observation, sequential in-depth interviews and sequential focus groups. Our overarching hypothesis is that culture and community-specific context shape the ADRD illness experience in Indigenous populations and create unique impacts of ADRD that require culturally tailored approaches to diagnosis and care. Compared to majority populations, AI/FN peoples are disproportionately and uniquely impacted by dementia and by other related chronic diseases. AI/FN people are living longer and have higher rates of age-related disease, yet, there has been little research that sheds light on peoples’ everyday experiences of ADRD. Our earlier research found that AI/FN people view symptoms of ADRD as a natural part of the biological and spiritual lifecycle. This cultural understanding, along with poor experiences with the health care system, makes it less likely that AI/FN older adults will be diagnosed early and receive good care. Research is needed to understand what contributes to early diagnosis, quality of health care and quality of life for PWD and their families. We propose to (a) examine experiences and impacts across the dementia illness trajectory, and (b) determine what Indigenous peoples want in terms of outcomes of health care. Our specific aims are to examine the lived experiences of people with dementia as the illness progresses in 3 diverse AI/FN communities to identify cultural and community factors influencing the impacts of ADRD on PWD, families and communities. We will analyze how perceptions of ADRD and the illness experience influence health care seeking behaviors and the impact of the illness. We will examine how community-specific Social Determinants of Health influence the impact of ADRD on PWD, their families and communities. We will place the specific cultural understanding of dementia within the broader context of criteria to assess quality of life, diagnosis and how dementia stages are understood to determine appropriate methods to diagnose and measure ADRD in AI/FN peoples. In sum, our research is designed to discover cultural understandings of ADRD and aging that can be used to create specific approaches to assessing and managing ADRD and its impacts in these communities. Our analysis combines western and AI/FN explanatory models of illness so that our findings can be turned into recommendations and interventions that are meaningful and accepted to the people participating in the study and can be adopted broadly by other Indigenous communities across North America.