Services for Latino Family Dementia Caregivers: Is the Workforce Prepared?

The American healthcare system is ill-fitted to meet the needs of the growing population with Alzheimer's and Related Dementias (ADRD) and their caregivers, which disproportionately affects Latinos. This paper describes the caregiving process for Latino patients with ADRD from the perspective of caregivers and service providers to reveal service areas in need of improvement. Ten providers and 24 Latino caregivers were interviewed through the Miami-Dade County Aging Network. Interviews were analyzed using a grounded theory approach. Five themes emerged: lack of social service connectivity, case management challenges, unmet mental health needs, language barriers, and the need for alternative service models. Our analysis indicates insufficient training and the need to improve dementia competencies, support strategies, and understanding of cultural nuances among service providers. These findings can help inform the development of a required ADRD provider education curriculum that incorporates cultural competency training to improve the quality and effectiveness of care.

Care v. Caring: Obligation, Duty, and Love Among Latino Alzheimer's Family Caregivers.

The number of Latinos living with Alzheimer's disease is projected to grow. Latinos currently make one-fifth of U.S. family caregivers. In this paper, we explore the cultural scripts and gendered practice of care in Latino families in relation to the underutilization of services to persons with Alzheimer's disease and related dementias. We conducted interviews with 24 Latino caregivers in Miami-Dade, Florida representing six Latin American countries of origin. Interviews were analyzed using a grounded theory approach. We critically examined the concept of familism in order to better understand in-depth experiences of diverse Latino caregivers and concluded that an ethics of care model better elucidates the complexities of the care experience. Our analysis illustrates the ambivalence, contradictions, and changes in the beliefs and practice of care. These findings can help advance understanding among researchers and providers to develop a formal support system that is responsive to Latino caregiver needs.

The Experience of Alzheimer's Disease Family Caregivers in a Latino Community: Expectations and Incongruences in Support Services.

OBJECTIVES: Current theoretical constructs on the utilization of formal support for Latino caregivers focus on familism and exclude the cultural values represented in the service system. The purpose of this paper is to highlight the experience of care for Latino family caregivers to persons with Alzheimer's disease and related dementias (ADRD). We also examine the cultural congruence between provider perspectives with the expectations of Latino ADRD caregivers. METHOD: We conducted extended interviews with 24 Latino ADRD caregivers and 10 service providers. Interview transcripts were coded and analyzed using a grounded theory approach. RESULTS: Our study provides a deeper understanding of Latino caregiving experiences and highlights some of the structural and systematic issues in current systems of caregiver support. While Latino families have very specific notions of care, by upholding notions of familism, there is a tendency to not look deeper into how they may be better supported in caregiving and fall into the "culture trap." The assumption that family should be the natural support network for older adults may lead to health and social systems of care to ignore the specific needs of the Latino population. DISCUSSION: Services are being provided under a model that was established four decades ago and may not reflect current realities. The concept of "an ethics of care" allows us to move beyond familism and explain that underutilization of services may also be due in part to the cultural incongruence between what service providers offer and the perceived needs of Latino caregivers.