Caregiver Support Services Research Articles

Family caregiving experiences of medical school faculty: high prevalence, high strain, and low resource awareness

BackgroundAdult caregiving can be demanding and stressful, especially when the caregiver is employed. As the age of the U.S. population and workforce increases, more adults are providing care to aging family members.ObjectiveTo understand the prevalence and aspects of the caregiving experience and caregiving strain among department of medicine faculty members, and to gauge their awareness and utilization of caregiving resources.DesignWe used a cross-sectional survey design. A questionnaire survey was developed and launched in Redcap in October, 2022, and an invitation was emailed followed by two reminders to all full-time and part-time faculty members (N = 1053) in our department of medicine.Main measuresFaculty demographics, caregiver status, caregiving details, degree of mental or emotional strain, and knowledge of and use of employer and external caregiver resources.Key resultsOf the 1053 faculty members who received up to three email survey invitations, 209 (20%) responded of which 76 (36%) were current caregivers and 117 (56%) were non-caregivers. Among the 76 current caregivers, 53 (70%) reported providing care for parents or parent-in-laws and 9 (12%) reported caring for a spouse. One-third of current caregivers reported caring for individuals with Alzheimer’s disease or dementia/memory problems. Ninety-five% of current caregivers reported some or a lot of caregiving strain. A wide variation in knowledge of and use of employer and external caregiver resources was reported.ConclusionsDepartment of medicine faculty who provide adult caregiving report a high prevalence of strain and wide variation in knowledge of and use of employer and external caregiver support services, suggesting opportunity to better understand where gaps exist in providing support for caregivers.

Spatial context and informal caregivers’ Well-being: A case study of a Carer Café project in Hong Kong

This paper evaluates how a Hong Kong community Carer Café program reduce the informal (unpaid) caregivers’ navigation burden of social and health care service system. The cafés took place once biweekly at pantries and activity rooms of social service centers, community centers, and churches, which installed temporary decorations to create a café-like environment. his article will use the conceptual framework of spatial context, including spatial propinquity, spatial composition, and spatial configuration, to highlight four mechanisms in the process of informalization. They are (a) changing layout; (b) promoting spatial propinquity of caregivers; (c) creating a spatial composition facilitating social interaction; and (d) allowing the caregivers to use informal spaces flexibly. Qualitative data from 26 respondents, including social workers, project staff, volunteers, and users, sheds light on the details of four mechanisms. Results show that the Carer Cafés were transformed into a safe and caregiver friendly third place by the informalization process. Thus, caregivers from communities visit cafés frequently. These frequent visits facilitate the Cafés become a hub for informal caregivers access different resources and supports. This paper suggest that spatial context would be an important consideration to further explore in the future community caregiver support service practice and policy.

Stroke caregivers’ perception on instant messaging application use for psychological intervention: a qualitative study

ABSTRACT In caring for patients with stroke, the leading cause of death and disability affecting over 80 million people worldwide, caregivers experience substantial psychological and physical burdens and difficulties in help-seeking owing to physical and time-constraints. Social distancing measures imposed during the coronavirus disease 2019 (COVID-19) pandemic further restricted them from using caregiver support services. While the use of telehealth emerged as a global prevailing trend during the COVID-19 pandemic, evidence for utilising instant messaging (IM) applications for psychological intervention is scanty. This study aimed to explore stroke caregivers’ perceived potential utility of IM-delivered psychological intervention. Between January and August 2020, 36 adult family stroke caregivers in Hong Kong were recruited to individual telephone semi-structured interviews using purposive sampling. The interviews were audio-recorded, transcribed verbatim and analysed using an interpretive description approach. Three themes of caregivers’ perceptions towards IM-delivered psychological intervention emerged: perceived high convenience and ease of use, perceived advantages that overcome existing barriers to services and message delivery tailored to individual needs. Our findings suggested that there is an imminent need among stroke caregivers for personalised psychological interventions and that IM is a potential modality for overcoming existing barriers in delivering accessible support to caregivers in real-time, real-world settings. Our study highlighted caregivers’ acceptance and perceived benefits of IM-delivered psychological intervention and provided practical insights into the design of IM-delivered psychological interventions.

Shifting Paradigms

Shifting Paradigms

UNMET NEED AMONG A NATIONAL SAMPLE OF OLDER ADULT HCBS USERS

Abstract Long-term services and supports delivered in the home or community (home and community-based services) continue to be favored by consumers and policymakers alike. Given that HCBS is largely state-directed, there is considerable heterogeneity in program design and eligibility, and no standardized tool by which quality is measured. In the absence of the widespread use of standardized and uniform measures of HCBS quality, unmet need is poorly understood. We examined the relationship between services received and desired as a means of predicting unmet need among a national sample of older adult (65+) consumers of publicly funded HCBS (e.g., Medicaid, PACE, OAA) using data from the National Core Indicators - Aging and Disability survey. Our sample included 13,459 older community-dwelling adults, of which 60.0% were White, 23.2% were Black, and 17.0% of another race/ethnicity. Roughly 15% of older adults reported having AD/ADRD (54% White, 20% Black). Older adults with AD/ADRD were more likely to use personal care services (59.6%), followed by delivered meals (21.3%), and homemaker services (18.6%) compared to those without AD/ADRD. Adults with AD/ADRD desired more caregiver support services and transportation services vs what they were already receiving. Of 10% already receiving caregiver support services, approx. 9% desired additional support. Of 9.6% receiving transportation services, 7.3% desired additional support. We found variation in HCBS received and desired among older adults by both AD/ADRD status and race/ethnicity, suggesting gaps in unmet needs for these groups.

WORKING TOGETHER TO PROVIDE GERIATRIC CARE: INTERDISCIPLINARY TEAM CREATION AND EVALUATION IN CANADA

Abstract Prince Edward Island is Canada’s smallest province (pop. 160,000) and has one of the oldest populations in Canada. While there is a robust and growing geriatrics program through provincial healthcare, it consists exclusively of medical providers (i.e., geriatricians and nurse practitioners). An opportunity for formal interprofessional collaboration presented itself when the University of Prince Edward Island began a Doctor of Psychology (PsyD) program in 2019. Soon thereafter, we established an interdisciplinary team between the PsyD and the provincial geriatrics programs. The goals of the team included: 1) enhancing care for older adults on the island, 2) providing training for PsyD students, and 3) increasing interprofessional collaboration and learning. In an evaluation of the first year of the collaboration, we collected data on the types of referrals and characteristics of the patients referred (e.g., number of medications), and asked all providers on the team (N=4 geriatricians, N=9 nurse practitioners, and N=4 psychology student clinicians) to answer open ended questions on the highlights and challenges of establishing the team, the organization of formal team meetings, and provision of patient care. Of the 74 patients seen by psychology, reasons included cognitive or psychodiagnostic assessment (N=22, 30%), psychotherapy (N=20, 27%), caregiver support (N= 25, 34%), or multiple services (i.e., both assessment and intervention; n=7, 10%). Additional patient characteristics will be shared, as well as themes from provider survey responses. Our program has implications for other areas in rural North America, particularly training opportunities built into our team functioning.

ALASKA NATIVE DEMENTIA CAREGIVERS AND THE INCREASING NEED FOR CULTURALLY SAFE RESOURCES

Abstract With the rate of dementia increasing among Alaska Native people and the tribal health system ill-equipped to meet the challenges associated with dementia care, there is an urgent need to better understand cultural perspectives on dementia caregiving and what states and communities can do to support their caregivers. Despite the fact caring for others is a value and cultural practice for Indigenous communities, and caregivers tend to report fewer challenges and barriers related to care, they still experience barriers and challenges. Guided by Kleinman’s explanatory model of illness, a qualitative, the aim of this study was to gain insight on Alaska Native caregiver experiences in caring for someone living with dementia in communities across Alaska. 21 interviews with Alaska Native dementia caregivers in rural and urban communities were completed. Despite being innovative and resourceful in providing care, caregivers reported the high cost of care, inadequate training of health care providers, and the paucity of culturally safe caregiver training, education, and resources are especially concerning and need to be addressed in a timely fashion. Caregivers in this study recommended the development of basic educational materials to be aware of dementia, its stages, and the available supports, as well as caregiver support and respite services. The recommendations from this study focus on outreach and education for caregivers to improve their access to education, training, and support to reduce isolation, increase their dementia knowledge, expand their awareness of ancillary resources, and inform help-seeking decisions.

ADVANCING RESEARCH ACROSS THE ADRD CONTINUUM IN UNDERREPRESENTED POPULATIONS

Abstract This symposium highlights innovative work advancing ADRD research with African Americans, Latinos, and Arab Americans. Included papers address critical issues along the ADRD spectrum from life course risk factors, through mild cognitive impairment (MCI), to dementia caregiving. Investigating links between the early-life environment and later-life ADRD risk, Dr. Tsotsoros examines cognitive correlates of adverse childhood experiences (ACEs) in two disparate samples, demonstrating the need to characterize risk pathways among older Latina women, who are at increased risk of both ACEs and ADRD. Using nationally representative data, Dr. Esiaka focuses on adult risk factors for ADRD among Black men. She shows that neighborhood physical disorder and poor sleep quality represent key risk factors for worse cognitive health in this critically understudied population. Moving along the ADRD continuum, Dr. Darwish focuses on another severely underrepresented group: Arab American immigrants with MCI. Based on in-depth work with older adults in Lebanon, she details cultural adaptations made in the development of a combined cognitive-behavioral and cognitive rehabilitation intervention for this group. Next, Dr. Bouldin uses nationally representative data on African American, Latino, and non-Latino White older adults with dementia to quantify racial/ethnic differences in the prevalence and correlates of caregiver support service use. Findings highlight both risk and resilience among dementia caregivers from minoritized racial/ethnic groups. Finally, Cerise Elliott from the National Institute on Aging (NIA) will offer perspectives on how disaggregating population subgroups through between- and within-group research designs can advance NIA’s goal of understanding and eliminating racial/ethnic inequalities across the ADRD continuum. This is an Alzheimer’s Disease and Related Dementias Interest Group Sponsored Symposium.

The cancer caregiver lived experience: Supporting and advocating for patients with cancer throughout the care continuum.

222 Background: Data from the National Cancer Institute’s Surveillance, Epidemiology & End Results Program (SEER 2022) estimates there are currently over 18.1 million cancer survivors in the United States who rely on family and friends to provide caregiver support. Family and volunteer caregivers fulfill a vital and essential role for cancer patients throughout the care continuum and are at the forefront of advocating and navigating the health care system for the patients under their care. Recognizing the caregiver’s lived experience and the demands and obstacles caregivers endure has a direct impact on understanding the challenges cancer patients face daily. Methods: November 2022 – April 2023 the Raymond Foundation hosted nationwide cancer caregiver focus groups, personal interviews, advisory boards, and online surveys. Primary goals included reaching a diverse range of caregivers in medically underserved communities, rural, urban and community oncology settings. In addition, researchers were interested to learn how the cancer caregiver experience and burden had evolved since our nationwide cancer caregiver published studies in 2018 and 2020. Results: 1214 caregivers (48% identified as male; 52% identified as female) participated during the six-month research period. 96% stated they provide direct patient care, such as: overseeing and ensuring adherence of oral chemotherapy or immunotherapy; communicating with clinicians to coordinate medications for adverse effects; surgical and treatment-related wound and drain care; colostomy, ileostomy, urostomy, and percutaneous endoscopic gastrostomy (PEG or G) support; 94% of caregivers reported they are included in all medical and treatment decisions; 91% reported they felt ill-equipped to navigate complex medical terminology including precision medicine information, biomarker, genetic and hereditary testing and navigating clinical trial options; 87% reported respite care, additional support and educational services would enable them to become a more empowered caregiver and patient advocate; 78% reported their overall quality of life had diminished since becoming a caregiver with feelings of depression, anxiety, financial insecurity, burn-out, loneliness and fear. Conclusions: Cancer caregivers experience significant challenges as they care for their loved one facing a cancer diagnosis. Caregivers are trusted partners in treatment decision making, but too often caregivers do not receive the tools they need to help make informed decisions. Additional caregiver education and support services are essential, so caregivers can provide the best possible support for patients throughout the care continuum.

Developing a national implementation strategy to accelerate uptake of evidence-based family caregiver support in U.S. cancer centers.

Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N=238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N=30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.

Social support experiences of hispanic/latino parents of childhood cancer survivors in a safety-net hospital: a qualitative study

Purpose To describe the social support experiences of Hispanic/Latino parents while caregiving for childhood cancer survivors. Research approach Semi-structured one-on-one interviews were conducted among 15 caregivers from a safety-net hospital in Los Angeles. A thematic analysis approach was used to analyze data. Findings The positive influence of social support throughout their caregiving experience included (1) sharing information-enhanced knowledge, (2) receiving comfort and encouragement, (3) receiving tangible assistance reducing the caregiving burden, and (4) enhancing caregiving empowerment/self-efficacy. Sub-themes regarding the lack of social support included (1) being a single parent and (2) family and friends withdrawing after the child’s cancer diagnosis. Conclusion We found Hispanic/Latino parents strongly value social support as it enables them to have essential resources that support caregiving for their child and themselves. Efforts should ensure that caregivers are routinely screened to identify their supportive needs so that support services for caregivers can be optimized and tailored, as those with a lack of social support may experience excessive caregiver burden.

Experiences of family caregivers of people with spinal cord injury at the neurosurgical units of the Komfo Anokye Teaching Hospital, Ghana.

Spinal cord injury (SCI) often leaves affected persons with a lifelong demand for care. As a result, the effect of the condition goes beyond the injured person to affect family members and significant others who have to adjust their lives to provide care and support. However, little is known about the experiences of these family caregivers regarding the care of people with SCI in Ghana. Exploring their experiences would enhance the understanding of family caregiving of people with SCI and contribute to policy intervention. This qualitative descriptive phenomenology study used the purposive sampling method to select 10 family caregivers. Data were collected using a semi-structured interview guide through individual in-depth interviews. Written informed consent was obtained and interviews were audio-recorded and transcribed verbatim. Data were manually analysed following Colaizzi's method of data analysis. In all, 4 main themes emerged from the analysis of data (1) becoming a caregiver, (2) roles of the caregiver, (3) the burden of caregiving, and (4) coping strategies. The family caregivers provided vital assistance to their relatives with SCI and experienced physical and financial burdens as a result of the care. Due to the strains involved in the caregiving process, family caregivers adopted various strategies to cope with the situation. This study has provided evidence of the lived experiences of family caregivers of people with SCI in the Ghanaian context and further supports the findings of previous studies. Measures including training, counselling, and instituting social support services for family caregivers should be considered by the management of healthcare institutions to enhance the experiences of family caregivers.

Risk factors associated with home care safety for older people with dementia: family caregivers’ perspectives

BackgroundMany older people with dementia currently prefer home care; however, homes are neither professionally designed nor regulated like health care facilities, and home care is more prone to safety incidents. Many studies have examined home care safety for older people with dementia. However, factors contributing to safety incidents in home care have not been adequately considered. This study explored the risk factors for home care safety for older people with dementia based on the perspective of family caregivers.MethodsThis study used a qualitative research approach; a total of 24 family caregivers were interviewed face-to-face and semi-structured from February 2022 to May 2022, and the Colaizzi seven-step phenomenological research method was used to analyze the data and refine the themes.ResultsSafety risks in home care for older people with dementia stem from five areas: poor health of older people with dementia, dementia symptoms, unsafe home environment, the insufficient caring ability of family caregivers, and lack of safety awareness of family caregivers.ConclusionThe risk factors for home care safety for older people with dementia are complex. And as the primary caregivers of older people with dementia, the caregiving ability and safety awareness of family caregivers primarily determine the safety of home care for older people with dementia. Therefore, when addressing home care safety for older people with dementia, the focus should be on providing targeted education programs and support services for family caregivers of older people with dementia.

Caregivers’ willingness to pay for digital support services: Comparative survey

BackgroundConsidering the substantial information needs experienced by informal caregivers, the increased availability of digital support services for caregivers as well as the potential they offer, further understanding of caregivers’ willingness to pay for digital support services is needed. ObjectiveThe aim of this study is to identify associations between informal caregiver's characteristics and their willingness to pay for digital support services in two countries: Italy and Sweden. MethodsA sample of 378 respondents participated in a cross-sectional survey. Respondents were recruited by the Italian National Institute of Health and Science on Ageing and the Swedish Family Care Competence Centre. A two-part regression model was used. In the first part, logistic regression analysis was applied to investigate the association between willingness to pay and sets of independent variables (caregiver’s demographics, caregiver’s socioeconomic resources and caregiving context). In the second part, a generalized linear model (log-link and gamma distribution) was applied to determine the adjusted mean willingness to pay. ResultsMore than half of the participants from both countries of our study were willing to pay out of pocket for digital support services. A recommendation by a healthcare professional was the top factor that may motivate caregivers’ willingness to pay an additional amount for a paid version of a digital support service. In both countries, the majority of the respondents believe that the government should allocate more funds for digital support services and for improving digital infrastructures. Caregiver' s gender, care recipient relationship to the caregiver, care duration, the total household income and the amount spent per month on professional caregiving services are all associated with willingness to pay. For every additional 10 Euro increase in the amount spent per month on professional caregiving services, the odds of willingness to pay an additional Euro for a digital support service increased by 0.60 % in the Italian sample (p= 0.002, 95% CI: 1.002, 1.009) and 0.31% in the Swedish sample (p=0.015, 95% CI: 1.006, 1.057). ConclusionsFactors such as demographics, socioeconomic resources and the caregiving context may play a role in caregivers’ willingness to pay for digital support services. The digital and social divide may negatively affect caregivers’ willingness to pay for digital support services. Policy makers and insurance providers should consider innovative policies to fund digital support services that have been shown to be effective at supporting and improving caregivers’ health outcomes via subsidies or other incentives. Future research that evaluates the cost-effectiveness of digital support services is needed in a context of a growing number of informal caregivers and ever scarcer resources.

Abstract B115: A qualitative study on caregiving social support among Hispanic/Latino parents of childhood cancer survivors in a safety-net hospital

Abstract Background: Parents are the primary caregivers throughout their child's cancer journey. As a result, they may experience a shift in their self and social identity both immediately and in the long term after their child is diagnosed with cancer. Insights into Hispanic/Latino parents of childhood cancer survivors' social support is limited, however. This qualitative study aimed to address the existing gap by describing the social support experiences of Hispanic/Latino parents while caregiving. Methods: Caregivers were recruited from a safety-net hospital in Los Angeles County between July to September 2020. Qualitative semi-structured interviews were conducted with 15 Hispanic/Latino caregivers of childhood cancer survivors (in English and Spanish). The interviews were audio-recorded, professionally transcribed, and analyzed following a reflexive thematic analysis approach. Two coders independently reviewed and coded transcripts and used grounded theory methodology elements (e.g., gerund coding and memo-writing) on Dedoose. Results: Two related themes were identified: the positive influence of social support when available and the challenges associated with lack of social support. All caregivers spoke about the positive influence of social support throughout their caregiving experience (both during and after treatment). Participants' descriptions of the influence of social support included (1) information sharing enhanced knowledge, (2) receiving comfort and encouragement, (3) receiving tangible assistance reducing the caregiving burden, and (4) enhancing caregiving empowerment/self-efficacy. The most common form of social support among these caregivers was tangible assistance, which included financial support for groceries, bills, rent, and essential services such as transportation, work hour flexibility, childcare for other children, and help with household maintenance. Sub-themes regarding the lack of social support included (1) being a single parent and (2) family and friends withdrawing after the child's cancer diagnosis. Single parents described juggling multiple roles, including caring for the patient, maintaining financial support for the entire family, and caring for other children while managing their child's illness. One caregiver expressed that "if there were two of us [during treatment], it would have been easier." Conclusion: When a child is diagnosed with cancer, parents are the primary caregivers and the presence or absence of social support may impact their caregiving experience, particularly for Latino/Hispanic caregivers who are medically underserved. The findings of this study indicate that Hispanic/Latino parents strongly value social support as it enables them to have essential resources that support caregiving for their child and themselves. Efforts should ensure that caregivers are routinely screened to identify their supportive needs. In an effort to optimize support services for caregivers, it needs to be tailored as those with a lack of social support may experience excessive caregiver burden. Citation Format: Carol Ochoa, Randall Y. Chan, Lissette Cervantes, Kimberly A. Miller. A qualitative study on caregiving social support among Hispanic/Latino parents of childhood cancer survivors in a safety-net hospital [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B115.

FACTORS INFORMING CLINICIAN CHOICE OF TELEHEALTH MODALITY TO SUPPORT DEMENTIA CAREGIVERS

Abstract In summer 2020, 68 clinicians in the New England area caring for Veterans with dementia as part of a specialty team were surveyed regarding caregiver support services, with a 46% response rate (n=31). When faced with the need to abruptly discontinue in-person dementia support services, the majority of respondents offered caregivers support via telephone rather than video telehealth. Only 4 of 31 (13%) mentioned offering video visits for the first time to replace face-to-face visits. Clinician choice of modality largely reflected shifts among preestablished communication modalities/patterns and were influenced by clinician perception that older patients and their caregivers would prefer the telephone. Clinicians without experience using video telehealth with older adults were unlikely to offer video visits despite evidence that many older adults are willing and able to participate. Assessing caregiver wish/ability to participate in video visits may inform and shape clinician choice of telehealth modality.

CAREGIVING BURDENS OF TASK TIME AND TASK DIFFICULTY AMONG PAID AND UNPAID CAREGIVERS OF PERSONS LIVING WITH DEMENTIA

Abstract Demands of caregivers of persons living with dementia (PLWD) are often influenced by the context of their caregiving situation. This study examines factors associated with caregiving burden in terms of task time and task difficulty among paid and unpaid caregivers of PLWD. Cross-sectional baseline survey data were analyzed from 110 paid and unpaid caregivers of PLWD participating in a larger NIH-funded study assessing the feasibility of using a novel in-situ sensor system. Oberst Caregiving Burden Scale constructs of task time and task difficulty served as dependent variables. Two least squares regression models were fitted, controlling for contextual items related to the caregiver, care recipient, and caregiving logistics. Caregivers whose care recipients were female (B=-0.29, P=0.006), had more chronic conditions (B=0.31, P=0.011), and had lower Mini-Mental State Exam scores (B=-0.20, P=0.015) reported higher task time burdens. Caregivers whose care recipients had other paid caregivers (B=0.30, P=0.031) and spent more months/years caring for their care recipients (B=0.28, P=0.004) reported higher task time burdens. Caregivers’ task time burden was positively associated with their emotional stress level (B=0.30, P=0.020). Caregivers’ task difficulty burden was positively associated with their emotional stress (B=0.30, P=0.029) and depressive symptomatology (B=0.32, P=0.002). Results reinforce the relationship between caregiver burden and mental health. While the care recipient’s disease profile and needs were drivers of task time burden, which may also require coordination with other paid caregivers, task difficulty was emotionally driven. Findings highlight the importance of caregiver support services and programming for mental health.

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.

Impact of additional community services provision on dementia caregiver burden: an interrupted time-series analysis of 12-year interRAI assessments in Hong Kong

ObjectivesTo evaluate the impact of providing additional dementia caregiver support services on caregiver burden.DesignInterrupted time-series analysis using territory-wide panel data.SettingsAll public-funded district elderly community centres in Hong Kong (HK).ParticipantsPrimary caregivers...

A study of caregiver support services: Perspectives of family caregivers of persons with intellectual disabilities in Singapore

AbstractMost people with intellectual disabilities in Singapore live with family and are supported by family caregivers. Many caregivers lack the awareness, skills and resources needed for their caregiving role. A caregiver support service designed to build the capability of family caregivers serving children and adults with intellectual disabilities was evaluated after 2 years of operation to ascertain the level of caregiver coping and resilience, perceived impact of strategies for emotional support, and satisfaction with a range of support services and gaps in service. Family caregivers were surveyed regarding satisfaction with services received using the Client Satisfaction Questionnaire (CSQ‐8) and feedback from activities and events. Their coping and resilience were measured with the Coping Competence Questionnaire (CCQ). Qualitative data from caregiver interviews and staff focus groups were analysed for key themes that were triangulated and converged with other findings. Satisfaction, better coping and resilience were associated with specific support services. Key themes emerged around several effective supports and areas of unmet needs across the lifespan. Limitations and areas for improvement were identified to meet a broader range of caregivers. Targeted family support services can enhance the well‐being of caregivers supporting people with intellectual disabilities (ID) across the lifespan. The results inform policymakers and support agencies that support of the family, not just the person with ID, is an important factor and needs to be incorporated at the heart of the design and development of any inclusive community living in Singapore.