Indigenous Cultural Understandings of Alzheimer’s Disease and Related Dementias – Research & Engagement (ICARE)

The purpose of this research is to better understand the lived-experiences and impact of Alzheimer’s disease and related dementias (ADRD) in Indigenous populations. Our research acknowledges that culture and community context influence Indigenous peoples’ experience with dementia. Culturally grounded approaches and resources to increase awareness and improve outcomes are needed. We use ethnographic and community-based participatory research (CBPR) approaches to work in partnership on this research with Indigenous communities in Minnesota, Wisconsin and Ontario. Our qualitative analytic approach incorporates both biomedical and Indigenous understandings of ADRD. Findings will support the creation of culturally specific health promotion and education materials. These efforts also reinforce our long-term goal to create culturally safe clinical guidelines and dementia diagnosis with care tools for North American Indigenous populations.

The Center for Community-Engaged Rural Dementia and Alzheimer’s Research (CERDAR)

The Center for Community-Engaged Rural Dementia and Alzheimer’s Research (CERDAR), aims to tackle the growing challenge of dementia and dementia care needs in rural Minnesota. CERDAR will use community-based approaches to engage rural communities in Northern Minnesota in Alzheimer’s and Related Dementia’s (ADRD) research. CERDAR is comprised of five pilot projects that address:

  • The role of community-based exercise in rural dementia prevention.
  • Cultural factors in dementia and ADRD care.
  • Technology to support caring for those with dementia in their homes.
  • Rural epidemiology and health services efforts.
  • The identification of factors that would increase rural and Indigenous participation in ADRD related clinical trials.
  • Our long-term goal is to improve the quality of life for rural Minnesotans impacted by dementia.

Addressing Alzheimer’s Disease and Related Dementias Disparities: The American Indigenous Cognitive Assessment (AMICA)

Memory Keepers Medical Discovery Team (MK-MDT) has been awarded $10 million over five years by the National Institute on Aging (NIA), part of the National Institutes of Health (NIH) for their grant entitled “Addressing Alzheimer’s Disease and Related Dementias Disparities: The American Indigenous Cognitive Assessment (AMICA)” (R01AG074231). MK-MDT Executive Director, Dr. Kristen Jacklin (PI), will lead the five-year project (2022-2027) to develop a culturally appropriate dementia evaluation toolkit for American Indian communities. This toolkit will include:

(1) a cognitive assessment

(2) caregiver report of symptoms of dementia,

(3) evaluation of depression symptoms

(4) inventory of changes in activities of daily living (ADLs)

Dr. Kristen Jacklin shared that “Having an accurate diagnosis of dementia is critical to having access to appropriate care for the person living with dementia and their caregivers. In our previous research we learned that Indigenous populations are reluctant to seek care for dementia because the clinical diagnosis process and tools are not culturally fair or safe. The toolkit we aim to develop will help meet a significant community need and will lead to greater accuracy and earlier detection of dementia.” This research expands and adapts previous clinical tools that have been developed and validated with Indigenous populations in Australia and Canada. The tools to be adapted include the Canadian Indigenous Cognitive Assessment (CICA), as well as the Australian Kimberly Indigenous assessments for depression (KICA depression), Activities of Daily Living (KICA-ADL) and a caregiver report (KICA-Carer). Memory Keepers researchers: Drs. Kristen Jacklin (PI), Wayne Warry (Co-I), Will Mantyh (Co-I) have partnered with the Red Lake Nation in Minnesota on this project. Drs. Carey Gleason (MPI) and Megan Zuelsdorff (Co-I) from the University of Wisconsin-Madison, will implement the project with the Oneida Nation in Wisconsin; and Drs. Tassy Parker (MPI) and Nancy Pandhi (Co-I) from the University of New Mexico will work on the AMICA project with a diverse urban population through the First Nations Community HealthSource in Albuquerque, New Mexico. Addressing Alzheimer’s Disease and Related Dementias Disparities: A 5-year project to develop a culturally safe assessment toolkit called the American Indigenous Cognitive Assessment (AMICA)

Dementia Caregiver Mastery Using Cultural Practices of the White Earth Nation

In partnership with the White Earth Nation, the purpose of this research partnership is to culturally adapt and modify the Savvy Caregiver in Indian Country manual to address the unique cultural experiences and needs of family caregivers. Savvy Caregiver for Indian Country is psychoeducational in nature, employing instruction (basic information about dementia), skills training (provision of caregiving strategies), active practice of behaviorally-oriented skills, and a coaching method that provides reinforcement as well as further guidance in the mastery of caregiving skills.

The activities proposed in our study are premised on the idea that teaching caregivers to identify triggers for Behavioral and Psychological Symptoms of Dementia (BPSD), particularly agitation, to implement effective psychosocial strategies. These activities produce an increase in feelings of contented involvement among caregivers and a sense of caregiver mastery, resulting in a decreased likelihood of institutionalization. We will specifically explore the impact of cultural activities (e.g., Native foods, music, dancing, arts and crafts, and storytelling) for family caregivers and Persons with Dementia (PWD) in reducing agitation.

Investigating Alaska Native Successful Aging in Two Regions of Alaska through Elder-Centered, Tribal Participatory Research Approaches

The purpose of this project is to improve the quality of life among Alaska Native Elders across Alaska and learn how to “age in a good way” from the experiences and lessons of Alaska Native Elders in two culturally and geographically distinct regions of Alaska. The goal of this study is to develop a comprehensive theory of Alaska Native successful, create tools to educate communities on successful aging, learn how to encourage successful aging in care facilities, and establish a measure of Alaska Native successful aging to be tested in a future grant.