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.

Promoting LatinX Generativity: Cultural Humility and Transformative Complicity Through Geriatric Teams

“…In fact, Dr. Jean Anastas (2012), former President of the National Association of Social Workers, published her grave concerns over the lack of critical thinking skills promoted in the professional curriculum. A case in point is the stirring account of Latinx caregivers who have felt neglected by social workers and other health service professionals (Turner et al, 2015). The following quote by a focus group participant reveals detriment to family well-being due to undereducated and experientially underexposed social workers, and to the lack of critical thinking skills that are necessary to obtain information for effective care.…”

“…In addition, compounded stigma resulting from ethnic and LGBTQ identity is often sufficient to keep the clients themselves from seeking medical attention. Their difficulties are further exacerbated when health care professionals are ignorant about the complex needs of multiple subjugated identities (Gratwick, Jihanian, Holloway, Sanchez, & Sullivan, 2014;Oswald, & Masciadrelli, 2008;Pasupathi et al, 1995;Turner et al, 2015). It is for this reason that the Partnership for Health and Aging sponsored by the American Geriatric Society (Young et al, 2011) has convened 20 participating organizations to improve elder care.…”

“…The research of Turner et al (2015) revealed a focus on family, patience, tolerance, and love as common values in the narratives of their focus group participants. These caregiving priorities are relevant to altruism and the transgenerational sharing of history in broader LGBTQ elderly community family networks (Oswald & Masciadrelli, 2008).…”

“…(p. 44) Within this population, Latinx elderly are of special concern, given their rapid growth and the heightened rate of dementia. Turner et al (2015) alert us to these concerning trends:…”

“…Although Latinxs tend to experience greater longevity due to strong family and community networks of support, their use of health services often occurs in contexts of marginalization and disregard compounded by provider-induced ageism and ethnocentrism. Ill-informed and deficit-based policies negatively target Latinxs, and minimize their sense of worth, normalcy, and "productivity" (Abela, 2015;Bullock, 2004;Carr et al, 2015;Hayslip, Maiden, & Dolbin-MacNab, 2015;Hayslip & Smith, 2013;Hou, 2015;Kelly & Damato, 1995;Turner et al, 2015).…”