Family Caregiving in a Great Lakes Native American Community: A Mixed Methods Study of Service Utilization

Abstract

AbstractBackgroundNative Americans are disproportionately impacted by ADRD, and family caregiving is uniquely significant within Indigenous communities. Caregiving services can improve outcomes but are underutilized, and increasing use of caregiver services is key to addressing the dementia care crisis. Indigenous populations are underrepresented in the ADRD caregiving literature, resulting in a significant gap in understanding of how to improve engagement with services. We examine perspectives on service utilization among caregivers in a large tribal nation in the US Great Lakes region.MethodWithin a community‐based research partnership between the Wisconsin ADRC and the Oneida Nation of Wisconsin, N = 481 completed a survey on use of seven common caregiver resources, including support groups, respite, caregiver training, household help, transportation for care recipient, nursing home, and financial assistance. Drawing on the Andersen model of utilization, multiple regression models examined correlates of positive attitudes toward use of services among caregivers (N = 207), defined as past, current, or intended future use of services. Follow‐up in‐depth interviews with 10 caregivers of elders with ADRD (Table 3) explored decision‐making regarding service utilization using qualitative content analysis.ResultThere were few demographic differences between caregivers and non‐caregivers in the sample (Mage = 52 and 54 yrs; 75% female; Table 1). Over half (54.6%) of caregivers were employed; most (64%) cared for someone with ADRD. In the final regression model in the caregiver subsample, only level of belief that traditional Oneida values and practices support caregivers in using caregiver services predicted positive attitudes toward service utilization (p<.001; Table 2). Interviews revealed barriers to service use include low awareness, complexities of service funding structures, and Elder preferences. Perceptions of alignment of traditional cultural values with service use were complex and nuanced.ConclusionUsing mixed methods in a Native American community sample, we identified unique barriers to access resources to support elders with ADRD and their families, including perceived cultural support for service use. Our findings contribute to the scant literature on ADRD caregiving among Native Americans and provide support for tailored interventions (e.g., Savvy Caregiver in Indian Country). Results can inform public health initiatives to address ADRD disparities and improve outcomes for Indigenous persons with ADRD.