Informing Dementia Support Programs That Serve Low-Income, Multilingual Communities in a Safety Net Health System: Use of Focus Groups to Identify Specific Needs

Abstract

The Centers of Medicare and Medicaid Services recently announced a new voluntary nationwide model. This model aims to provide comprehensive, standard care for people living with dementia and their unpaid caregivers and to enhance health equity in dementia care. However, little is known about the needs of older adults with dementia and their caregivers in a multiethnic and multicultural patient population of a safety net health system. The aim of this study is to include their voices. We conducted four focus groups in English and Spanish to investigate the common needs and barriers unique to the care of patients within the Los Angeles County healthcare system. Using qualitative, iterative analyses of the transcripts, we identified four domains of concern from the dyads (persons with dementia and their caregivers): need for education for dyad-centered care, barriers to resources, dyad safety, and caregiver burden and insight. These domains are interconnected, and the way this patient population experiences these domains may differ compared to those in well-resourced or predominantly English-speaking healthcare settings. Therefore, the identified domains serve as potential building blocks for dementia support programs inclusive of underserved, multicultural populations.