Latino Caregivers Research Articles

Association Between Material Hardship in Families With Young Children and Federal Relief Program Participation by Race and Ethnicity and Maternal Nativity

Even brief periods of hardship during early childhood may have lifelong consequences. Prior cross-sectional research limited to respondents with English proficiency and internet access during the COVID-19 crisis documented families with young children that struggled to afford basic needs like food and rent. Few studies have examined experiences of families with young children by race and ethnicity and maternal nativity. To examine the association of COVID-19 relief programs with the mitigation of household food insecurity among families with young children, as well as being behind on rent and disparities in program receipt. This cohort study used data from the ongoing repeat cross-sectional Children's HealthWatch study comprising families surveyed at baseline (January 1, 2018, to March 20, 2020) and during the COVID-19 crisis (September 1, 2020, to June 30, 2021). Baseline questionnaires were administered face to face to caregivers of children aged 48 months or younger in English or Spanish in emergency departments or primary care clinics in 5 US cities. The follow-up questionnaires were administered via telephone. Supplemental Nutrition Assistance Program (SNAP) participation or receipt of at least 1 Economic Impact Payment (EIP; ie, stimulus check) during the COVID-19 crisis. The primary outcomes were household food insecurity (assessed via the US Household Food Security Survey Module: Six-Item Short Form) and being behind on rent. Logistic and binomial regression models were used to calculate adjusted odds ratios (aORs) and unadjusted and adjusted prevalence ratios (PRs). Of 1396 caregiver-child dyads (20.3% response rate), race and ethnicity data were available for 1357 caregivers: 514 (37.9%) were Black, non-Latino; 558 (41.1%) were Latino; 230 (16.9%) were White, non-Latino; and 55 (4.1%) were of other non-Latino race or ethnicity. Among 1390 responses with nonmissing data, 417 children (30.0%) had an immigrant mother, and among 1388 responses, 1238 (33.5%) were publicly insured. During the crisis, 467 of 1395 respondents (33.5%) reported household food insecurity, and 567 of 1391 respondents (40.8%) reported being behind on rent. Families with immigrant mothers had lower odds of EIP and SNAP participation than families with US-born mothers (eg, aOR, 0.07 [95% CI, 0.05-0.12] for both EIP and SNAP vs neither), despite being more likely to report household food insecurity (adjusted PR [aPR], 1.48 [95% CI, 1.28-1.71]) and being behind on rent (aPR, 1.14 [95% CI, 1.00-1.30]). Families with Black (unadjusted PR [uPR], 1.40 [95% CI, 1.08-1.82]) or Latino (uPR, 1.54 [95% CI, 1.19-1.98]) caregivers or caregivers of other race and ethnicity (uPR, 1.67 [1.12-2.49]) were also more likely than families with White, non-Latino caregivers to experience household food insecurity or being behind on rent (families with Black caregivers: uPR, 2.02 [95% CI, 1.58-2.58]; families with Latino caregivers: 1.68 [95% CI, 1.30-2.16]; families with caregivers of other race or ethnicity: uPR, 1.94 [95% CI, 1.34-2.80]). Adjustment for covariates and differential participation in relief programs did not entirely account for these disparities. The results of this cohort study suggest that the COVID-19 crisis exacerbated preexisting inequities in food insecurity and difficulty paying rent according to race and ethnicity and maternal nativity and that equity-focused policy changes are needed to ensure that all children and their families in the US can afford basic needs for optimal health.

Recruiting Socially Disconnected Latinos Caring for a Person with Alzheimer’s Disease and Related Dementias During the COVID-19 Pandemic: Lessons Learned

ABSTRACT Objectives The purpose of this article is to present conceptual and methodological challenges to recruitment strategies in enrolling socially disconnected middle-aged and older Latino caregivers of a loved one with Alzheimer’s disease and related dementias (ADRD). Methods Middle-aged and older Latino ADRD caregivers were recruited into two early stage, intervention development studies during the COVID-19 pandemic via online or in-person methods. Recruitment criteria included Latino ADRD caregivers over the age of 40 reporting elevated loneliness on the UCLA 3-item Loneliness Scale (LS) during screening. Results Middle-aged, Latino caregivers were recruited predominantly from online methods whereas older caregivers were mostly recruited from in-person methods. We report challenges identifying socially disconnected Latino caregivers using the UCLA 3-item LS. Conclusions Our findings support previously reported disparities in recruitment by age and language and suggest further methodological considerations to assess social disconnection among Latino caregivers. We discuss recommendations to overcome these challenges in future research. Clinical Implications Socially disconnected Latino ADRD caregivers have an elevated risk for poor mental health outcomes. Successful recruitment of this population in clinical research will ensure the development of targeted and culturally sensitive interventions to improve the mental health and overall well-being of this marginalized group.

Gathering Perspectives on Video- and App-Based Language Instruction: A Technology-Based Coaching Intervention to Increase Spanish-Speaking Latino Caregivers' Use of Naturalistic Language Intervention Strategies

Purpose: Few caregiver-implemented naturalistic language interventions (NLIs) are available for Spanish-speaking Latinos who have young children under 3 years with language delays, and there is a scarcity of studies that provide information about intervention development or social validity of interventions for this group. This study introduces Video- and App-Based Language Instruction (VALI) as a technology-based caregiver-coaching intervention being developed to increase caregivers' use of Spanish language-promoting strategies in everyday activities with their infants and toddlers. Method: Fifteen participants including caregivers, speech-language pathologists, and researchers completed an online survey and participated in focus groups to share their perspectives on the feasibility, acceptability, and usefulness of the first iteration of VALI. Data were summarized with descriptive statistics and thematic analysis. Results: Participants generally provided support for VALI and thought caregivers could use the technology-based intervention within naturalistic interactions. VALI materials received positive ratings for appearance, inclusivity, and understandability. Specific suggestions were provided for semantic and syntactic adjustments. Participants shared comments to improve individual VALI strategies and help ensure the asynchronous coaching procedures and targeted outcomes were culturally acceptable. Conclusions: The first iteration of VALI appears to be a promising NLI for use by Spanish-speaking Latino caregivers with their young children. After initial adaptations are made based on findings from this study, additional feasibility and efficacy evaluations should be conducted. Recommendations for further development of VALI have implications for application in similar interventions for Spanish-speaking Latino caregivers. Supplemental Material: https://doi.org/10.23641/asha.22280845

Health Information-Seeking Behavior of Latino Caregivers of People Living with Dementia: A Mixed-Methods Study.

This mixed-methods study examined the health information-seeking behavior of Latino caregivers of people living with dementia. A structured survey and semi-structured interviews were conducted with 21 Latino caregivers in Los Angeles, California. For triangulation, semi-structured interviews were also conducted with six healthcare and social service providers. The interview transcripts were coded and analyzed via thematic analysis, while the survey data were summarized using descriptive statistics. The results show that caregivers sought information on what changes to expect as dementia progresses. Some desired detailed (limited) information to be better prepared (to worry less). The most common action to address their information needs was searching the Internet. However, those who did this tended to be concerned about the quality of information. Overall, this study sheds light on how much detail Latino caregivers desire in the information they need and the actions they take to obtain this information.

Cultural adaptation of ACT to support caregivers of autistic Latino children: A pilot study

Providers working with families of autistic children have a shared responsibility to ensure access to culturally responsive and linguistically appropriate services for Latino caregivers. Acceptance and Commitment Therapy (ACT) is a promising intervention for Autism parents. However, research on ACT for Latino caregivers is absent. This small pilot study indicated that a brief, group-based, culturally adapted ACT protocol may enhance the wellbeing of Latino mothers. The 2-day intervention was associated with significant reductions in anxiety, depression and psychological inflexibility for all parents, with medium to large effect sizes. Methodological factors significantly limit conclusions, however, the study offers the foundation for a program of research centered on the promotion of thriving in Latino families with autistic children, and how to best integrate guidelines for culturally adapted practice with CBS approaches. The study also highlights the importance of centering social justice as a key component of what it means to be effective contextual behavioral scientists and the need for systemic action to address current barriers to care for Latino families.

Scale of Parental Playfulness Attitude (PaPA): Psychometric Properties With Latino Caregivers in the United States

Parent-child play is a beneficial and meaningful co-occupation. Therapists who want to optimize parent-child play for Latino- and Latina-American dyads need valid, reliable measures to assess caregiver playfulness in addition to preexisting measures of child playfulness. To evaluate data collected from Latino-American caregivers with the Scale of Parental Playfulness Attitude (PaPA), a 28-item parent self-report to determine its construct validity, internal reliability, and cross-cultural validity. Quantitative exploratory design applying a latent-trait psychometric model. Online survey. Convenience sample of 50 Spanish-speaking parents from the mainland United States recruited via snowballing (88% mothers, ages 24-47 yr; M = 34.8 yr; 82% first-generation Americans). The inclusion criteria were age ≥18 yr; literate in Spanish; primary caregiver to a child age 2.5-7 yr. Data from an existing sample of 50 parents dwelling in Puerto Rico were used to examine cross-cultural validity. Rasch analysis demonstrated evidence for adequate construct validity: positive point-measure correlations, 93% fit of items, logical item hierarchy, and good progression of the rating scale. Range and mean for parent playfulness exceeded those of the items; principal-components analysis revealed one contrast of 4.46 eigenvalues, bringing unidimensionality into question. Evidence suggested excellent internal reliability (person-reliability index = 0.85, strata = 3.55) and good cross-cultural validity (25 of 28 items formed a similar hierarchy for parents dwelling in the mainland United States and Puerto Rico). Although the PaPA can be used to assess caregiver playfulness with culturally diverse Latino-American dyads, further research is required. What This Article Adds: This study provides evidence for the construct validity and internal reliability of a tool that measures parent playfulness in the context of parent-child play. The PaPA is an important tool for occupational therapists working with Latino-American families.

"I Lay Awake at Night": Latino Family Caregivers' Experiences Covering Out-of-Pocket Costs When Caring for Someone Living With Dementia.

The financial burden of caregiving has received less research attention than physical and emotional costs. This is especially true for underserved ethnic minorities. Financial strain affects mental and physical health and is unequally distributed across caregivers of different races and ethnicities. Although caregivers overall spend, on average, one quarter of their income on caregiving, Latino caregivers, the focus of this study, spend nearly half. To better understand this disparity, we conducted 11 qualitative interviews with 14 Latino caregivers of persons living with dementia located in either California or Texas. Interview transcripts were thematically coded, guided by a material-psychosocial-behavioral conceptual model of financial strain. We identified 3 themes: daily needs and costs, psychological distress caused by financial issues, and stressful barriers to accessing family and societal support. Furthermore, interviews revealed how Latino culture may influence spending patterns and management of costs. Findings suggest that preference by Latino families to care for a family member in the home may be met with a financial disadvantage due to the high out-of-pocket costs of care. A better understanding of the factors contributing to high costs for Latino caregivers and how these costs affect caregivers will inform approaches at both the individual and policy levels and develop culturally relevant interventions to help Latino families to lower caregiving costs. This is especially important as the number of Latinos living with dementia is expected to increase over the next 4 decades and effective interventions are lacking.

LATINO FAMILY CAREGIVERS’ EXPERIENCES COVERING OUT-OF-POCKET COSTS WHEN CARING FOR SOMEONE LIVING WITH DEMENTIA

Abstract Family caregivers to persons living with dementia spend an average of $11,293 annually out-of-pocket on caregiving costs. Costs include home modifications, medications, and other daily expenses. Financial strain from caregiving affects caregiver mental and physical health and is unequally distributed across race/ethnicity groups. While other caregivers spend approximately one-quarter of their income on caregiving, the cost for Latinos family caregivers comprises nearly half of annual income. To gain insight into this disparity, eleven 1-hour in-depth qualitative interviews were conducted with Latino caregivers of persons living with dementia living in California and Texas. Interview transcripts were thematically coded, guided by the Tucker-Seeley Material–Psychosocial–Behavioral Model of financial strain. We identified four themes: 1) caregivers were concerned with meeting the daily needs of care recipients and would incur additional costs, such as credit card interest, to address immediate needs; 2) high levels of psychological distress were expressed regarding caregivers paying for the care of loved ones and themselves in the future; 3) caregivers wanted to use community resources that help older adults and their families but described stressful barriers accessing support. Further, Latino culture affected spending. For example, caregivers incurred shared living costs given reluctance to place loved ones in a nursing facility, exemplifying the concept of familismo. By understanding the factors contributing to high caregiving costs for Latino caregivers and the challenges met when addressing these costs, we can build approaches at both the individual- and policy-levels and develop culturally relevant interventions to help Latino families to lower care costs.

RECRUITING THE ULTRA-INVISIBLE: COMMUNITY RECOMMENDATIONS FOR FORMER DEMENTIA CAREGIVER RECRUITMENT

Abstract Bereaved dementia caregivers often refer to themselves as “Ultra-Invisible” (contrasting with caregivers’ “Invisibility”). We report on a series of open-ended discussions with the “Supporting Dementia Caregivers After Death” community advisory board (CAB) about how best to recruit bereaved dementia caregivers for research. The 12-member CAB includes current and former caregivers of PLWD due to early- and normal-onset Alzheimer’s, Lewy body, and Parkinson’s, an Alzheimer’s Association senior program manager, the Indian Health Board of Minneapolis Spiritual Health leader, the Engaging communities of Hispanics/Latinos for Aging Research Network leader, and a Federally Qualified Healthcare Center Equity Director. Strategies included: partnering with local religious institutions who may be primary source of bereavement services across cultures, multiple survey formats (e.g., recruiting Latino caregivers by phone; written surveys for Indians on rural reservations with limited phone/internet access). 3) Broadened age group considerations (e.g., one African American CAB-member’s young children contribute meaningfully to caregiving).

Exploring Care Service Use Among Latino LGBTQ+ Caregivers of Persons Living with Alzheimer’s Disease and Related Dementias

AbstractBackgroundLatino and lesbian, gay, bisexual, transgender or queer (LGBTQ+) adults are both growing populations at increased risk of Alzheimer’s disease and related dementias (ADRD). The increased prevalence in ADRD among these populations requires caregiving that is often met by informal caregivers. Yet, very little is known about the experiences of informal ADRD caregivers who identify as both Latino and LGBTQ+.MethodWe examined differences in sociodemographic characteristics, caregiving characteristics, and use of caregiver support services between English‐proficient Latino and non‐Latino LGBTQ+ ADRD caregivers recruited via social media (n = 286; Latino n = 103).ResultLatino caregivers identified as gay (45%), lesbian (24%), bisexual (20%), and queer/other (11%). Sixty‐one percent identified as cisgender (not transgender) women, 39% cisgender men, and 19% identified as transgender. On average, Latino caregivers were younger (36 vs. 38 years old), reported a lower percentage of individuals who completed a college degree (36% vs. 51%), a higher income (64% vs. 50%), and a lower percentage of being married or partnered (44% vs 63%). Latino caregivers were in their caregiving roles for seven months less than non‐Latino caregivers, and reported a greater (8% vs. 6%) presence and severity of behavioral symptoms of distress (e.g., agitation, disrupted sleep) among their care recipients living with ADRD. Latino caregivers indicated their care recipients had less dependence in activities of daily living (1.3 vs. 1.8) and more independence in instrumental activities of daily living (5.1 vs. 4.2). Latino caregivers also reported lower use of respite services (38% vs. 51%), transportation services (37% vs. 53%), and making home modifications (34% vs. 71%) for their care recipients living with ADRD.ConclusionFindings indicate Latino and non‐Latino LGBTQ+ ADRD informal caregivers differed in sociodemographic characteristics, length of time caregiving, and the presence and severity of behaviors and functioning levels of their care recipients living with ADRD. Latino caregivers utilized caregiver support services to a lesser degree than non‐Latino caregivers. More research is needed to understand ways to address the needs and better serve this growing population.

A Text Message Intervention to Support Latino Dementia Family Caregivers (CuidaTEXT): Feasibility study

AbstractBackgroundLatino family caregivers experience disproportionately poor health outcomes and access to caregiver support. We aimed to test the feasibility, acceptability, and preliminary efficacy of CuidaTEXT: a tailored text message intervention to support Latino dementia family caregivers.MethodCuidaTEXT is a six‐month, bilingual, and bidirectional intervention tailored to caregiver needs (e.g., education, problem‐solving, resources). We enrolled 24 Latino caregivers in a one‐arm trial, and assessed feasibility, acceptability, and preliminary efficacy within six months.ResultRecruitment took 61 days and enrollment took 20. None of the participants unsubscribed from CuidaTEXT, and 83.3% completed the follow up survey. Most participants (85.7%) reported reading most text messages thoroughly. Participants reported high levels of satisfaction with the intervention (3.6 on a scale from 1 to 4). CuidaTEXT helpfulness was high (3.5‐3.8 on a 1 to 4 scale). Compared to baseline, at six months caregiver behavioral symptom distress (0‐60) decreased from 19.8 to 12.0, and depression (0‐30) from 8.8 to 5.4 (p<0.05).ConclusionCuidaTEXT demonstrated high levels of feasibility, acceptability, and preliminary efficacy among Latino caregivers. The next logical step is CuidaTEXT’s efficacy‐testing.

A text message intervention to support latino dementia family caregivers (CuidaTEXT): feasibility study

ABSTRACT Objectives To test the feasibility, acceptability, and preliminary efficacy of CuidaTEXT: a bidirectional text message intervention to support Latino dementia family caregivers. Methods CuidaTEXT is a six-month, bilingual intervention tailored to caregiver needs (e.g., education, problem-solving, resources). We used convenience sampling and reached 31 potential participants via clinics, registries, community promotion, and online advertising. We enrolled 24 Latino caregivers in a one-arm trial and assessed feasibility, acceptability, and preliminary efficacy within six months. Results None of the participants unsubscribed from CuidaTEXT and 83.3% completed the follow up survey. Most participants (85.7%) reported reading most text messages thoroughly. All participants reported being very or extremely satisfied with the intervention. Participants reported that CuidaTEXT helped a lot (vs not at all, a little, or somehow) in caring for their care recipient (71.4%; n = 15), for themselves (66.7%; n = 14), and understanding more about dementia (85.7%; n = 18). Compared to baseline, at six months caregiver behavioral symptom distress (0–60) decreased from 19.8 to 12.0 and depression (0–30) from 8.8 to 5.4 (p < .05). Conclusions CuidaTEXT demonstrated high levels of feasibility, acceptability, and preliminary efficacy among Latino caregivers. Clinical implications CuidaTEXT’s feasibility and potential for widespread implementation holds promise in supporting Latino caregivers of people with dementia.

Care v. Caring: Obligation, Duty, and Love Among Latino Alzheimer's Family Caregivers.

The number of Latinos living with Alzheimer's disease is projected to grow. Latinos currently make one-fifth of U.S. family caregivers. In this paper, we explore the cultural scripts and gendered practice of care in Latino families in relation to the underutilization of services to persons with Alzheimer's disease and related dementias. We conducted interviews with 24 Latino caregivers in Miami-Dade, Florida representing six Latin American countries of origin. Interviews were analyzed using a grounded theory approach. We critically examined the concept of familism in order to better understand in-depth experiences of diverse Latino caregivers and concluded that an ethics of care model better elucidates the complexities of the care experience. Our analysis illustrates the ambivalence, contradictions, and changes in the beliefs and practice of care. These findings can help advance understanding among researchers and providers to develop a formal support system that is responsive to Latino caregiver needs.

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.

The Experience of Alzheimer's Disease Family Caregivers in a Latino Community: Expectations and Incongruences in Support Services.

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. We conducted extended interviews with 24 Latino ADRD caregivers and 10 service providers. Interview transcripts were coded and analyzed using a grounded theory approach. 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. 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 Latino parents: An outcome evaluation of the Academia de Cultura Latina Para Padres.

Social capital interventions have been linked to various health and well-being outcomes in children and families. This study evaluated the Academia de Cultura Latina Para Padres (ACLP), a grass roots women-led parent engagement program that aimed to increase its participants' understanding and access to information about their children's education to support their academic success. Cross-sectional data were collected from 100 Latino caregivers who were on average 40.3 (SD = 12.12) years old, participated in the ACLP program between September and November 2019, and had at least one child or grandchild who attended Rosa Parks Elementary School in San Diego, California. A paired t test and multiple linear regression were conducted to compare the participants' scores on a pretest and posttest. A thematic analysis approach was also used to code participant responses to open-ended workshop satisfaction questionnaires. Participants scored significantly higher on the posttest after participating in the ACLP program, and although we did not find a significant relationship between the participants' attendance and posttests, we found a significant relationship between their positive ratings of the workshops and posttest scores. Findings from this study can inform future parent involvement programs, strategies for community engagement and practice with Latino caregivers, and research.

"My backpack is so heavy": Experiences of Latino caregivers of family with early-onset Alzheimer's.

While it is well-known that caregiving can have adverse effects on the physical and mental health of informal caregivers and their families, caregivers of those with early-onset Alzheimer's Disease (EOAD) may have distinct needs. Little is written about the experiences of Latino caregivers of family members with EOAD, especially inherited forms. This study's objective was to explore the experiences and needs of Latino caregivers of persons with EOAD. Five focus group discussions (FGDs) were conducted among 27 informal caregivers of Latinos with EOAD who were recruited through an AD clinic in Los Angeles. The stress of caregiving was compounded by other pressures and worries, such as taking care of young children, providing financially for family, caregivers' own co-morbidities, and contemplating their own risk of inheriting EOAD. Resources for monolingual Spanish speakers were scarce. Participants had two primary unmet needs: information and support services. Participants lacked information about how to provide appropriate care, which heightened fears. Difficulty in obtaining a diagnosis from physicians who were uninformed about EOAD was also common. Recommended topics for informational campaigns included how-to videos on caring for a loved one but also topics related to self-care for caregivers. Our results underscore the need to tailor programs for caregivers of family members with EOAD. Educational campaigns could help to dispel myths and misconceptions, reduce stigma associated with EOAD, and encourage more people to seek timely care. Additional psychosocial support, such as support groups, could build solidarity and self-efficacy. Better access to dual-language information and support could encourage early help-seeking but also improve caregivers' quality of life as they manage long-term caregiving responsibilities.

41896 Surveying knowledge of quality of dementia care among Latino caregivers

ABSTRACT IMPACT: This qualitative study describes health system barriers to high-quality care for Latino older adults with Alzheimer’s Disease and Related Dementias OBJECTIVES/GOALS: Compared to non-Latino Whites, Latino older adults are more likely to receive low-quality dementia care such as high-risk medications or services. Caregivers play a critical role in managing medical care for persons with dementia (PWD). Yet little is known about the perceptions and knowledge of dementia quality of care among Latino caregivers of PWD. METHODS/STUDY POPULATION: We used a qualitative research design and conducted interviews with Latino caregivers of PWD and caregiver advocates. We recruited both from community organizations, senior centers, and clinics. Our interview guide focused on experiences of caregiving, interactions with medical system, and knowledge and experiences managing behavioral and eating problems. We used Grounded Theory methodology for coding and analysis, focusing on contrasting and comparing experiences within and between caregivers and caregiver advocates. RESULTS/ANTICIPATED RESULTS: Preliminary results from interviews with two caregivers and two caregiver advocates illustrate that caregivers of persons with dementia have a difficult time receiving high quality care from primary care clinicians. All participants noted that many primary care doctors didn’t know how to diagnose ADRD and dismissed critical symptoms as part of old age. Caregivers also reported that they wished they had more information on what to expect with ADRD disease progression, noting they received little information from the formal medical care system. With respect to behavioral problems, caregiver advocates noted that primary care doctors often did not provide non-pharmacological alternatives to behavioral problems. DISCUSSION/SIGNIFICANCE OF FINDINGS: Findings from our pilot study demonstrate that there is a clear need to train primary care physicians who serve Latino older adults on ADRD care. Improved diagnosis and management could improve outcomes among Latino older adults with dementia.

Social support and healthcare utilization of caregivers of Latinas with breast cancer.

Family caregivers experience significant health consequences related to caregiving, including higher mortality rates. Latino caregivers may have additional challenges related to social determinants of health. Gender and social support are key factors to consider in the context of chronic illnesses and healthcare use in caregivers of Latinos diagnosed with cancer. The purpose of this study was to examine the moderating effect of gender and social support on the relationship between chronic illnesses and healthcare utilization in caregivers of Latina breast cancer survivors. This was a secondary analysis of family caregivers from an experimental study with breast cancer survivors and their designated family caregivers. Participants completed telephone surveys about demographics, presence of chronic illnesses, frequency of emergency department, urgent care, and hospital visits, social support, and acculturation. Data were analyzed for direct and moderated relationships. There was a significant relationship between number of chronic illnesses and healthcare utilization, informational support, and social isolation. Income and acculturation were not related to chronic illnesses or healthcare utilization. Gender did not moderate the relationship between chronic illnesses and healthcare utilization. Informational support was a marginal moderator of the relationship between chronic illnesses and healthcare utilization alone and with acculturation and income included as covariates. Clinicians should consider the influence of informational support and social isolation on chronic illnesses and healthcare use in caregivers of Latina breast cancer survivors, specifically, how these factors may influence navigation of the healthcare system.

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.