Latino family caregivers who care for loved ones with dementia are likely to experience challenges navigating the healthcare system as well as unique cultural pressures, according to an October study published in the Journal of the American Geriatrics Society.
Researchers interviewed 19 Latino family caregivers of persons living with moderate to advanced dementia who resided in New York City from June to November 2024, with five interviews (26%) conducted in Spanish and the rest in Spanglish. The average age of care recipients was 88.5; most (94.7%) were born outside of the United States. The average age of the caregivers was 64.7, and 15 (78.9%) were female.
The study identified two themes as the sources of problems for Latino dementia caregivers: Caregiving and understanding of dementia shaped by individual, family and social factors (Theme 1); and navigating formal services amid gaps in cultural alignment and support (Theme 2).
Subthemes of Theme 1 include the caregiver’s own understanding of dementia, a lack of support and understanding among family members and Latino cultural perspectives on dementia. One participant said that “In our culture, we [the women] are the caretakers,” implying an unequal distribution of caregiving responsibilities between male and female family members. Additionally, dementia is often equated with being “crazy” in many Spanish-speaking communities, which creates a stigma that prevents patients from seeking care.
Subthemes of Theme 2 included trial and error, an education and resources gap, and cultural tension with healthcare. Participants described miscommunications in care including misinterpretations of Spanish idioms as well as being given overly complex or unavailable Spanish-language care resources. However, participants responded positively to healthcare team members who spoke Spanish or shared their Latino culture.
“In conclusion, we found that Latino family caregivers of PLWD lacked support from family, the community and healthcare teams,” authors said. “They reported receiving little to no education or resources on dementia from healthcare teams. This often left them feeling isolated and unprepared in their role. This study highlights the need to improve communication during outpatient appointments, provide culturally centered and linguistic educational resources, and empower caregivers to express their dementia concerns and needs to healthcare teams.”