Development of CuidaTEXT: a text message intervention to support Latino dementia family caregivers

ObjectivesTo describe the development of CuidaTEXT: a tailored text message intervention to support Latino dementia family caregivers.MethodsCuidaTEXT is informed by the Stress Process Framework and Social Cognitive Theory. We developed and refined CuidaTEXT using a mixed-method approach that included thematic analysis and descriptive statistics. We followed six user-centered design stages, including the selection of design principles, software vendor collaboration, evidence-based foundation, caregiver and research/clinical advisory board guidance, sketching and prototyping, and usability testing among five Latino caregivers.ResultsCuidaTEXT is a bilingual 6-month long intervention tailored to caregiver needs that includes: 1) 1-3 daily automatic messages (n=244) about logistics, dementia education, self-care, social support, end-of-life, care of the person with dementia, behavioral symptoms and problem-solving strategies; 2) 783 keyword-driven text messages for further help with the above topics; 3) live chat interaction with a coach for further help; 4) a 19-page reference booklet summarizing the purpose and functions of the intervention. CuidaTEXT’s prototype scored 97 out of 100 in the System Usability Scale.ConclusionsCuidaTEXT’s prototype demonstrated high usability among Latino caregivers. CuidaTEXT’s feasibility is ready to be tested.Clinical ImplicationsCuidaTEXT’s usability and its potential for widespread implementation holds promise in supporting Latino caregivers.

Older Latinos’ Perceptions of the Caregiving Experience

There has been a rapid growth of Latinos age 65 and older in the United States and the population is projected to grow to 21.5 million by 2060. Latinos with Alzheimer’s disease is expected to increase 832% by 2060. Caregiving for adults with Alzheimer’s Disease and Related Dementias (ADRD) is physically, emotionally, and financially demanding, and has significant implications for caregivers’ health, personal and social life, and overall well-being. This study aimed to describe the perceived experiences of middle-aged and older Latino who were primary caregivers of relatives with ADRD. We conducted semi-structured interviews with Latino caregivers to examine their perceived experiences of providing care for a relative with ADRD. Interviews were conducted in English and Spanish and were transcribed, translated into English when needed, and coded. We conducted direct content analysis. Participants were aged 50 to 75 years (n = 16), the majority were female (n = 12), and majority were caring for either their parent or spouse. We identified six reoccurring themes in the Latino caregiving experiences: (1) caregiver burden; (2) dealing with care recipient; (3) coping strategies; (4) social support; (5) cultural values; and (6) knowledge about services. The identified themes showed that Latino caregivers need support from their family and friends for caregiving. Latino family’s structure plays an important role in caregiving experience. These themes are important to consider in future interventions that aim to reduce caregiver burden in Latinos as they influence the overall well-being of the caregiver.

Engaging Isolated Hispanic and Latino Older Adult Caregivers in Remote Behavioral Interventions

Recruiting Hispanic/Latino older adults for behavioral clinical trials is challenging, particularly those who are isolated. This presentation describes the recruitment process and feasibility/acceptability outcomes for the adaptation of two interventions (Connect for Caregivers and Engage Coaching) aimed at improving the social relationships and supports of older adult Hispanic/Latino caregivers of a family member with dementia. We compare online and community-based recruitment methods for English and Spanish-speaking Hispanic/Latino caregivers across the United States and present recruitment challenges during COVID-19. Of eligible participants, 82% were identified via online (e.g., research registry) and 18% via community-based (including snowball sampling) methods. Of participants recruited via online methods, 22% were Spanish-speaking, versus 100% of those recruited by community-based methods. Overall, 91% of all eligible/interested participants enrolled in at least one of the interventions. We discuss further the feasibility/acceptability of study procedures and the interventions, as the study was conducted remotely (via phone/Zoom) due to COVID-19.

The Experience of Alzheimer's Disease Family Caregivers in a Latino Community: Expectations and incongruences in support services

Objectives Current theoretical constructs on the utilization of formal support for Latino caregivers focus on familism and exclude the cultural values represented in the service system. The purpose of this paper is to highlight the experience of care for Latino family caregivers to persons with Alzheimer’s disease and related dementias (ADRD). We also examine the cultural congruence between provider perspectives with the expectations of Latino ADRD caregivers. Method We conducted extended interviews with 24 Latino ADRD caregivers and 10 service providers. Interview transcripts were coded and analyzed using a grounded theory approach. Results Our study provides a deeper understanding of Latino caregiving experiences and highlights some of the structural and systematic issues in current systems of caregiver support. While Latino families have very specific notions of care, by upholding notions of familism, there is a tendency to not look deeper into how they may be better supported in caregiving and fall into the “culture trap.” The assumption that family should be the natural support network for older adults may lead to health and social systems of care to ignore the specific needs of the Latino population. Discussion Services are being provided under a model that was established four decades ago and may not reflect current realities. The concept of “an ethics of care” allows us to move beyond familism and explain that underutilization of services may also be due in part to the cultural incongruence between what service providers offer and the perceived needs of Latino caregivers.

Engaging Underrepresented Caregiving Communities in Dementia Research

Family and friend caregivers of persons with dementia from underrepresented and traditionally underserved backgrounds are significantly underrepresented in dementia and caregiving research despite heightened disease risk, poorer outcomes, and disproportionate use of services within these populations. Efforts to develop and disseminate methods that foster greater inclusion of underrepresented caregiving populations in research are essential to ensuring that culturally specific understandings, priorities, and needs of these groups are systematically understood and addressed. In this symposium, we present a variety of studies that illustrate successful efforts to include dementia caregivers from underrepresented backgrounds in research. Two presentations focus on African American caregivers, one on caregivers residing in highly under-resourced areas, one on Latino caregivers, and one on sexual and gender minority (SGM) caregivers. The first presentation describes a capacity building approach through African American faith communities to develop a research registry and address informational needs regarding dementia. The second presentation focuses on eliciting African American caregivers experiences of crisis events. Presentation three describes a coalitional, community-informed approach to engaging caregivers in highly under-resourced areas to investigate experiences with post-acute care. The fourth presentation describes a community-network approach to implementing a text-message based support intervention among Latino caregivers; and the fifth presentation illustrates the utility of digital methods for engaging SGM dementia caregivers. Collectively, these presentations demonstrate a variety of approaches to engaging dementia caregivers from underrepresented and traditionally underserved backgrounds in research that are specific to individual communities and local contexts – as well as the findings that result from these efforts.

Information Seeking Behavior of Latino Family Caregivers of People With Alzheimer’s Disease and Related Dementias

Latinos are disproportionately affected by Alzheimer’s disease and related dementias (ADRD) compared to non-Latino Whites. Family caregivers need access to high-quality information, education, and support. The study objective was to understand the information seeking behavior of Latino caregivers of individuals with ADRD. We conducted qualitative interviews in Los Angeles County with Latino caregivers of individuals with ADRD (N=21) and with healthcare and community stakeholders serving Latinos with ADRD and their caregivers (N=6). Caregivers sought information about ADRD, healthcare services and treatment, available community resources, caregiving skills, and short- and long-term care. Having limited time to seek information, lacking skills to navigate the Internet, and insufficient availability of information created barriers to accessing information. With access to information, caregivers increased their knowledge about ADRD, enrolled the person with ADRD in a memory/dementia clinic, participated in treatment decisions, attended community events, learned how to respond to challenging behaviors, and enrolled in daycare/respite programs. Caregivers experienced barriers to using information due to the insurance and immigration status of the person with ADRD and due to services only being available in English. Our study contributes new knowledge on the accessibility and use of information by Latino caregivers and their unique barriers in transforming information access into meaningful results. Healthcare and community-based providers can use our study findings to tailor informational interventions to the needs and preferences of Latinos and to the unique barriers they face in using information to support their caregiving role.

Latino Caregivers’ Interactions With Their Children With Language Delays: A Comparison Study

Evidence-based treatments for young children with developmental language delays include caregiver-implemented naturalistic interventions. However, there is little research on culturally appropriate interventions for Spanish-speaking caregivers from low–socioeconomic status (SES) households and their young children with identified language delays. We compared interaction strategies of Latino Spanish-speaking caregivers from low-SES backgrounds and non-Latino English-speaking caregivers from high-SES backgrounds with their children with language delays. Caregivers’ interactions were coded for (a) interaction characteristics, (b) use of naturalistic language support strategies, and (c) linguistic input. Results indicated Spanish-speaking Latino caregivers from low-SES backgrounds used a more directive, responsive, and warm interaction style than non-Latino caregivers. Non-Latino, English-speaking caregivers from high-SES backgrounds used more cognitively stimulating strategies, spent more time observing and narrating play, and used longer utterances and more lexical diversity. Findings provide directions for future research and guidance for clinicians working with Latino families from low-SES households.