Indigenous Cultural Understandings of Alzheimer’s Disease and Related Dementias – Research and Engagement (ICARE)
The purpose of this research partnership is to better understand the lived-experiences and impact of Alzheimer’s disease and related dementias (ADRD) in American Indian populations. Minimal investments have been made in understanding the everyday experiences of ADRD in Indigenous populations worldwide, who are disproportionately impacted by dementia.
The research team represents the newly formed Memory Keepers Medical Discovery Team at the University of Minnesota Medical school. This research project is led by Dr. Kristen Jacklin who has worked with First Nations communities on Manitoulin Island, Ontario (ON), Canada for over 20 years. Our research in ON revealed that culturally-bound understandings of dementia and community context are key determinants in health care seeking behaviors and caregiving practices; and, Indigenous knowledge is an important source of support. The research in Canada resulted in a number of community resources to improve dementia knowledge and care.
What We Propose to Do
Building on our work in Canada, we intend to expand the previous research to include Indigenous communities in the territories surrounding the Great Lakes: Minnesota (MN) Ojibwe, Wisconsin (WI) Oneida and Ontario Anishinaabe. Expanding on knowledge domains previously explored, we will document the lived-experiences of diverse Indigenous people with dementia (PWD) and their caregivers, during the early, moderate and late stages of the disease.
The research we are proposing will involve three MN Ojibwe communities, the Oneida in WI, and the seven Anishinaabe communities on Manitoulin Island, ON. It will involve four main elements: (1) the collection of community level data (e.g., population, health status, services, economy, social supports and community life); (2) focus groups with health care workers; interviews with key informants (e.g., physicians, geriatric specialists, elders, traditional knowledge keepers, language speakers); (3) attending community events and answering questions related to the research; and, (4) interviews with Indigenous PWD and their caregivers.
The research activities, data collection and analysis will be guided by community advisors. We intend to establish a community advisory council at each location to meet with the research team at least six times per year to ensure community perspectives and understandings are prominent throughout the project. We will work with the leadership and community advisory councils in each location to hire a local research assistant to assist with all aspects of the research.
Why this is Important
While Indigenous epidemiological data for ADRD is sorely lacking, prevalence in Canadian and Australian Indigenous populations are reported to be 3-5x national averages and have a younger age of onset. Incidence in the American Indian/Alaska Native population is reported to be 13.6% higher than the White population. There are limited US ADRD studies including Indigenous populations, yet these populations bear the added burdens of an aging population with higher rates of co-morbidities and inequitable access to social, economic, and health systems resource.
Failure to conduct contemporary ADRD studies with Indigenous populations will widen health inequities. Trends in ADRD research including precision and personalized medicine and pre-clinical diagnostic criteria are largely developed without consideration for Indigenous-specific determinants of health.
Our premise is that if this cultural and contextual knowledge is not collected, future efforts to implement responses to dementia in Indigenous communities will lack the necessary guidance for positive outcomes.