Assessing the Unmet Needs of Spanish Speaking Family Caregivers of Persons Living with Dementia in the Greater Boston Area

Abstract

AbstractBackgroundSpanish‐speaking family caregivers of persons living with dementia (PLD) have limited resources in Spanish to aid in psychological coping with caregiver burden. They often have difficulty attending in‐person training due to barriers such as transportation costs, identifying substitute care, and ongoing COVID‐19 pandemic containment measures. There are few studies identifying Spanish language caregiver unique needs and preferences regarding desired caregiving skills and stress‐reduction interventions. In this study, we sought to identify the unmet needs of Spanish‐speaking family caregivers of PLD in the greater Boston area, as well as their preferences for virtual intervention frequency and duration.MethodsWe conducted two virtual focus groups with twelve Spanish language family caregivers of PLD (ages 37 to 87 years) recruited from the greater Boston area. Participants were asked semi‐structured questions regarding their unmet needs for caregiver skills training and stress reduction. We employed an inductive and deductive driven mixed method analytic approach. A taxonomy was created to organize results based on participant responses.ResultsThree major thematic clusters emerged. First, caregivers noted a desire to develop skills for managing stress, emotional reactivity, frustration, and grief. Second, there was an expressed need for education regarding disease‐specific knowledge such as stages of dementia, common manifestations, management of challenging symptoms and communication strategies with the PLD; how to navigate the health care system; and finding additional resources for care in the community. Third, there was an interest in learning about interventions for the PLD, such as specific activities to help keep them engaged and active. A particular interest was expressed in any interventions that might slow disease progression. Regarding frequency and duration for virtual intervention, caregivers most commonly preferred weekly sessions for 6‐10 weeks.ConclusionsUnmet needs of Spanish language family caregivers of PLD in the greater Boston area include education regarding disease‐specific symptoms and their management, and resources to enhance well‐being both in the caregiver and the PLD. Based on these results, we will develop a comprehensive virtual therapeutic intervention incorporating stress reduction techniques to facilitate emotion regulation, caregiver skills training, psychoeducation regarding dementia and caregiver resources, and healthful activities for the PLD.