Developing Culturally Appropriate Dementia Care Resources for American Indian Caregivers

As the elderly population continues to grow, American Indian/Alaska Native (AI/AN) communities across the country are recognizing the increasing need for Eldercare support – a population that is at a disproportionate risk of developing dementia and receiving inadequate healthcare. 

Located in northwestern Minnesota, the White Earth Band of Ojibwe is the largest of seven reservations in the state. Often at the forefront of bringing together the area’s Chippewa Tribes, the White Earth Nation is leading the way for American Indian health innovation and defining what it means to ‘age well’ far into the future. 

Jordan P. Lewis, PhD, MSW (Unangax, Native Village of Naknek), professor in the Department of Family Medicine and Biobehavioral Health at the University of Minnesota Medical School’s Duluth Campus, relocated from Alaska to Minnesota over a year ago to become the Associate Director of the Memory Keepers Medical Discovery Team (MK-MDT) on Healthy Aging. In this role, Dr. Lewis is building upon his experience as a leader in dementia care among Alaska Natives to help caregivers across Indian Country achieve culturally appropriate aging solutions. 

Supported by a one-year, $40,000 grant through the Emory University Roybal Center for Caregiver Mastery and in partnership with the White Earth Nation Medical and Public Health Departments, the pilot study “Mastery of Caregiving Skills Adapted for the White Earth Nation,” focuses on reducing stress by confronting unaddressed agitation and identifying triggers caused by the behavioral and psychological symptoms of dementia, such as hitting and biting. 

“Caregiving is a two-way street,” Dr. Lewis said. “Navigating dementia care can be stressful for those on each side of the memory loss experience.” 

As memory keepers, Elders are responsible for passing down stories and wisdom, an essential role in preserving their culture and keeping traditions alive. The groundbreaking collaboration with the White Earth Nation is the first of its kind for Minnesota-based American Indian caregivers and will have a significant impact on keeping Elders in their homes and communities longer, decreasing the likelihood of institutionalization. 

The National Indian Council on Aging, Inc., in collaboration with previous MK-MDT Executive Director, Dr. J. Neil Henderson, launched the Savvy Caregiver in Indian Country trainer’s manual, designed for those working with Indigenous dementia patients. Dr. Lewis’ project will seek input from the novel caregiving experience to expand dementia-related interventions. A cultural advisory board and focus groups will be asked to weigh in on modifications to the Savvy Caregiver in Indian Country Trainer’s manual, which will incorporate the cultural values and needs of the White Earth Nation. 

“New to the area and not familiar with the local Tribal Nations, this partnership with the White Earth Nation has helped me to learn more about Ojibwe culture, their history and Elder needs as memory keepers in the community,” Dr. Lewis said. 

Dr. Lewis’ previous research with Alaska Elders identified the benefits of incorporating traditional foods, songs, dances and other sacred practices as caregiving strategies to lower stress and agitated behaviors. 

“Agitation was a major issue recognized in previous dementia-related collaborations,” Dr. Lewis said. “Through these pivoted strategies, the relationship between caregivers and their family members with dementia will also become stronger over time.” 

Wrapping up the project by the end of 2021, Dr. Lewis and his team will share their findings and suggestions with the community and host discussions for the next steps in finalizing the mastery of caregiving skills tailored to the White Earth Nation. 

The team also plans to use the culturally appropriate modifications for The Savvy in Indian Country manual to support an application for a Stage 1b project to test the preliminary efficacy of the caregiving skills in a clinical trial.

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