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.
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.