Understanding Healthcare Barriers for Latino/a/e/x Families with Alzheimer's Disease: Insights from Primary Care Provider interviews

Abstract

Background: Alzheimer's Disease and Related dementias (ADRD) are disproportionately underdiagnosed, misdiagnosed, and undertreated in Latino/a/e/x populations living in the U.S. Latino/a/e/x families also experience low access to ADRD caregiver support services and high levels of depression. Primary care providers (PCPs) are the first point of contact for patients and their families, and they are critical in understanding the factors associated with disparities in accessing services. This project aims to reflect on the barriers that Latino/a/e/x families experience in accessing and using healthcare services from the perspective of PCPs.

Methods: The data was collected through structured interviews with 23 diverse PCPs across the US via videoconference or phone calls. Participants were recruited via snowball sampling. Two reviewers used an inductive coding approach to conduct qualitative thematic analysis. The Rigorous and Accelerated Data Reduction (RADaR) technique was used to extract relevant data and organize it into relevant categories.

Results: Some of the themes identified reflect the experiences of individuals in the diagnostic process and subsequent care: 1) Family members are usually the first ones to notice the symptoms, 2) Delays in seeking care might be partially influenced by denial from individuals and their families, 3) Language congruency promotes the disclosure of symptoms, 4) Care that is linguistically and literacy appropriate requires additional support of patients and families, and 5) Caregiving expectations and preferences by Latino/a/e/x families do not shield caregivers from feeling burnout. Overall, PCPs reflected that the experiences of individuals are highly influenced by socioeconomic factors, which also influence their care plans.

Conclusion: Most Latino/a/e/x older adults with ADRD will be cared for by a PCP at some point during their disease, which means that they require additional support and resources at primary care appointments to address the barriers to accessing care services and enhance health equity in Latino/a/e/x communities.