Using an Emic Lens to Understand How Latino Families Cope With Dementia Behavioral Problems

Abstract

Focus group data collected for a larger project to develop a fotonovela for Latino caregivers was used to conduct a meaning-centered thematic analysis in order to elicit Latino family caregiver perspectives on how behavior problems occurring in the context of dementia are perceived and managed. A sample of 42 Spanish-speaking Latino caregivers were recruited from organizations affiliated with the Alzheimer's Association near San Diego, California. Caregivers were queried on challenging behaviors, coping strategies, as well as other daily challenges. Focus group sessions were conducted in Spanish, translated and transcribed into English, and analyzed using qualitative, grounded anthropological methods. In addition to a range of behavior problems, five indigenous approaches to managing challenging behaviors were identified: acceptance, love, patience, adaptability, and establishing routines of care. Additionally, participants identified persistent challenges which deter effective coping. These include: issues with providers, problems with family members, limited knowledge of resources, emotional distress, and financial strain. To our knowledge, this is one of the few qualitative studies to report indigenous coping strategies for dementia behavioral problems. These findings have the potential to inform culturally-tailored intervention.