Reality of Family Caregiving for Hispanics With Alzheimer's Disease and Related Dementias: A Qualitative Analysis.

Abstract

Background: Underserved Hispanic patients often experience unmet palliative care (PC) needs, particularly those with noncancer diagnoses such as Alzheimer's disease and related dementias. Most caregivers for Hispanic patients are family relatives who are less likely to use health care and community resources and experience high caregiver burden. We adapted a culturally tailored patient navigator (PN) intervention to provide support and improve PC outcomes for Hispanics with Alzheimer's disease and related dementias and their family caregivers (FCGs). Objectives: To explore Hispanic FCGs' experiences and perceptions of caregiving for a loved one, and how our PN intervention impacted their needs. Design: Qualitative descriptive. Setting/Subjects: FCG participants (n = 10) from our randomized control trial's intervention group were recruited from academic and safety net hospitals and community-based clinics across urban and rural Colorado in the United States. Measurements: Data obtained from individual, semistructured, 30-minute telephone interviews were recorded, transcribed, translated, and analyzed using NVivo and qualitative thematic analyses. Results: Four major themes emerged: Methods of Support, Cultural Expectations and Varying Family Contributions, Lack of Self-Care, and Awareness. Subthemes highlighted differing definitions of "contributing," role resentment, and interpersonal issues. Varying familial expectations underscore FCG strain when the burden of caregiving is not shared. Participants used various coping strategies as necessary support and gained awareness through education, guidance, and referrals to resources. Conclusions: PNs helped FCGs and patients beyond the intervention's scope. Providing support and awareness to FCGs, and incorporating cultural beliefs, may improve PC access to disparate populations and guide future interventions. Clinical Trial Registration Number NCT03181750.