Indigenous Cultural-understandings of Alzheimer’s – Research and Engagement (ICARE) Project
Kristen Jacklin | Associate Director of Memory Keepers
Image Caption: Anishinaabe Cognition by artist Leland Bell.
There is an urgent need to address the increasing burden of Alzheimer’s disease and related dementias (ADRD) in American Indian and First Nations populations. Life Course Center Member Kristen Jacklin received new funding from the National Institute of Health (NIH) to create a foundational ethnographic database of lived experience of ADRD from these communities to inform the creation of culturally appropriate and safe approaches to improve diagnostics, care, and outreach.
ADRD rates are approximately three times higher among American Indian and First Nations populations, 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.
This project will use community-based participatory research, to engage Indigenous communities in Minnesota, Wisconsin and Ontario. The project will include cultural understandings of ADRD, experiences with diagnosis and care, and community strengths and challenges. Information will be collected using participant observation and semi-structured in-depth interviews with people with dementia, caregivers, and healthy seniors. The qualitative analytic approach incorporates both biomedical and Indigenous understandings of ADRD.
Mark Lee is a member of the LCC Advisory Board. As a new Senior Data Analyst at ISRDI, Mark studies population trends and disparities in dementia from a life course perspective. He was a predoctoral trainee in the population studies (2017-2019) and population health (2019-2021). Mark primarily works with health and aging surveys (e.g., WLS, HRS) that have been linked to the 1940 Census to study the long-term impact of early life exposures. His dissertation focuses on describing and explaining recent declines in age-specific dementia prevalence in the United States. His recent scholarship has appeared in journals such as Epidemiology and PloS One.