"Making Sense of a Disease That Makes No Sense": Understanding Alzheimer's Disease and Related Disorders Among Caregivers and Providers Within Alaska Native Communities

BACKGROUND AND OBJECTIVES: With the rate of Alzheimer's disease and related dementias (ADRD) increasing among Alaska Indian/Alaska Native (AI/AN) people, the Alaska Native Health system is ill-prepared to meet the challenges associated with the growing population at risk of ADRD. The high cost of care, inadequate training of health care providers, and lack of supportive services for caregivers are especially concerning.

RESEARCH DESIGN AND METHODS: Interviews were conducted with 22 AN caregivers for ANs with ADRD and 12 ANs and non-Native health care providers in communities across Alaska. Interviews lasted approximately 60 min and were transcribed verbatim. We employed directed content analysis to examine the major agreements and disagreements between the participants' understandings of ADRD in each of the domains of Kleinman's Explanatory Model of Illness.

RESULTS: Caregivers and health care providers expressed concerns about the lack of understanding, resources, and awareness of ADRD among ANs in rural and urban communities. Both caregivers and providers recognized the need to obtain an early diagnosis, blend Western and traditional medicines, promote lifestyle and dietary changes, and foster training for caregivers. Health care providers acknowledged their limited exposure to AN understanding of ADRD and wish to receive culturally relevant training to better serve AN.

DISCUSSION AND IMPLICATIONS: As the older AN adult population grows, the need for culturally responsive training and support services will continue to increase. We recommend establishing rural outreach and support groups for caregivers, developing an understanding of how ANs view ADRD to train and educate health care providers, and implement screening early for memory loss during routine medical examinations.