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 Indigenous (American Indian and First Nations) populations. Minimal investments have been made in understanding the everyday experiences of ADRD in Indigenous populations worldwide, who are disproportionately impacted by dementia.
This two-year, National Institutes of Health (NIH)/National Institutes on Aging (NIA) funded grant (1R56AG062307-01), is a community-based participatory research project led by a team of investigators from the Memory Keepers Medical Discovery Team at the University of Minnesota Medical School, Duluth campus and Dr. Carey Gleason at the University of Wisconsin-Madison.
Key members of this team (Jacklin & Warry) began working over 20 years ago with First Nations communities on Manitoulin Island in Ontario (ON), Canada. During those years, the research revealed that culturally-bound understandings of dementia and community context are key determinants in healthcare-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.
Building on the work in Ontario Canada, we have expanded the previous research to include the territories surrounding the Great Lakes regions of Northern Minnesota and Wisconsin. The current research partners include: The Red Lake Band of Chippewa Indians (MN) and the Grand Portage Band of Lake Superior Chippewa (MN); Oneida Nation of WI; and the seven Anishinaabe communities on Manitoulin Island, Ontario, Canada.
The ICARE project involves four main elements:
The collection of community-level data (e.g., population, health status, services, economy, social supports and community life);
Focus groups with healthcare workers;
Interviews with key informants (e.g., physicians, geriatric specialists, Elders, traditional knowledge keepers (cultural/spiritual leaders, language speakers); and,
Attending community events and answering questions related to the research.
To establish long-term relationships that build research capacity in the partnering communities.
Continue the research by securing NIH/NIA funding for a larger five-year study to include persons with dementia and their caregivers.
Develop culturally-grounded dementia education tools and care interventions to improve outcomes and quality of life for Indigenous (American Indian and First Nations) families living with dementia.
Who is doing this work?
Minnesota Investigators and staff located at the University of Minnesota Medical School, Duluth Campus, Memory Keepers Medical Discovery Team:
Dr. Kristen Jacklin, Principal Investigator
Dr. Wayne Warry, Co-Investigator
Dr. J. Neil Henderson Co-Investigator
Dr. Jim Allen Co-Investigator
Dr. Melissa Blind Research Coordinator
Dr. Andrine Lemieux Senior Research Associate
Jessica Koski, MHSc, Research Associate
Annamarie Hill Gutsch, MA, Community Outreach Specialist
Patrick Bright, MA, Research Associate
Mindy Dertinger, MA, Research Associate
Minnesota community partners and contributors:
Karen Bedeau, Community Collaborator, Red Lake
Oran Beaulieu, Community Collaborator, Red Lake
Susan Ninham, Community Collaborator, Red Lake
January Johnson, Community Collaborator, Red Lake
Red Lake Band of Chippewa Indians Community Advisory Council
Paula Schaefbauer, Community Collaborator, Grand Portage
Polly James, Community Collaborator, Grand Portage
Collette Pederson, Community Researcher, Grand Portage
Grand Portage Band of Lake Superior Chippewa Community Advisory Group
Ontario Investigators, community partners, staff and contributors:
Karen Pitawanakwat, RN, Community Researcher
Rhonda Trudeau, Community Research Assistant
Mary Jo Wabano, Community Collaborator
Pamela Williamson, Community Collaborator
Craig Abotossaway, Community Collaborator
Manitoulin Island Community Advisory Council
Wikwemikong Unceded Territory
Noojmowin Teg Health Access Center
Mnaamodzawin Health Services (on behalf of Aundeck Omni Kaning, Sheguiandah, Sheshegwaning, Whitefish River, and Zhiibaahaasing)
M’Chigeeng First Nation
Wisconsin Investigators, community partners, staff and contributors:
Dr. Carey Gleason, Co-Investigator, & Wisconsin Lead, University of Wisconsin, Madison
Dr. Nick Lambrou, Post-Doctoral Associate, University of Wisconsin, Madison
Wes Martin, Community Collaborator
Marlene Summers, Community Researcher, Oneida
Lois Strong, Community Researcher, Oneida
Oneida Nation of Wisconsin Community Advisory Board
Great Lakes Native American Elder Association