Understanding the Perspectives and Needs of Latinx Caregivers of Persons with Alzheimer’s Disease in the Appalachians: An Interpretive Phenomenological Approach

Background: Alzheimer’s disease and related dementias (ADRD) disproportionately impact Latinx and other communities of color in the United States. The challenges for patients with ADRD and their informal caretakers can be attributed, in part, to the gaps that exist within health care services and systems. Objective: To understand the perspectives of barriers, beliefs, knowledge, and needs for the Latinx informal caregivers that take care of relatives with ADRD in the Upstate of South Carolina, region of Appalachia. Methods: This study was approved by the GHS-Prisma Health and Clemson University IRB, Study #Pro00086707. In-depth phone interviews were conducted with a sample of Latinx informal caregivers. A descriptive and interpretive phenomenological approach was used for analysis. Participants were recruited through community partnerships with local organizations. Results: Salient themes identified in this study included the relevance of caregiver’s degree of awareness about the disease and a perspective of Alzheimer’s disease as a progressive and degenerative disease. Critical moments identified encompassed challenges related to patient engagement with the outside world, their attitudes, and behaviors, as well as caregiver-related challenges with access to culturally and linguistically relevant resources needed to provide proper care. Caregivers identified several culturally relevant coping strategies used and motivators in providing care for their relatives with ADRD. Conclusions: Linguistically and culturally sensitive programs and resources that account for knowledge, assets, and needs of Latinx informal caregivers of ADRD patients are needed to improve the quality of care and decrease disparities in health outcomes for Latinx older adults.