Caregiver Health Outcomes Research Articles

Systematic review and meta-analysis of home visiting interventions aimed at enhancing child mental health, psychosocial, and developmental outcomes in vulnerable families

BackgroundNumerous systematic reviews have shown home visiting interventions to be effective at improving a variety of parent and child outcomes. No review has, however, examined the impact of home visiting programs targeting child (aged 0–5 years) mental health, socioemotional and/or developmental outcomes in the context of families with high vulnerability and complex needs.MethodA systematic review and meta-analysis were undertaken to examine and synthesize the literature on home visiting programs administered by professionals/paraprofessionals for families with young children, high vulnerability, and complex needs. PsychInfo, Scopus, Embase, PubMed, and CINAHL were searched through August 2023. A manual review was also undertaken of the reference lists of the articles selected for the review and the Home Visiting Evidence of Effectiveness 2023 review/database. English language studies were included if they were evaluated with a group of participants (case studies were excluded), reported results of home visiting intervention targeted at improving mental health and psychosocial outcomes of caregivers and/or developmental outcomes for children (aged 0–4 years 11 months) of families with high vulnerability and complex needs. Two independent reviewers extracted data and assessed for risk of bias. Qualitative results were consolidated narratively while a meta-analysis was used to synthesize quantitative results.ResultsInitial searches identified 623 articles, of which 22 were included in the final review. Findings showed that 18 different home visiting interventions have been implemented with families with high vulnerability and complex needs, and that these interventions are effective at improving a variety of child outcomes. The meta-analysis showed that the weighted mean standardised effect sizes ranged from -0.31 to 0.20, with only one of the four outcomes (i.e., socioemotional and/or behavioural outcomes) being significantly different from 0 (standardised mean difference -0.31; 95% CI: -0.49, -0.13; z = 3.45, p = 0.00). High intervention variability and missing information meant that it was not possible to determine clear patterns regarding features that led to effective versus non-effective interventions.ConclusionTaken together, results indicate that there is some evidence showing that home visiting interventions targeted at families with high vulnerability and complex needs can be effective at improving some child outcomes. More research is required to solidify findings.Trial registrationThe University of York Centre for Reviews and Dissemination (PROSPERO) registration number CRD42023460366.

Health Literacy Profiles of Caregivers of Acute Myocardial Infarction Patients.

Health literacy among caregivers of patients with myocardial infarction is a crucial area that is still not fully addressed in research. In this study, our aim was to explore the health literacy profiles of caregivers of patients with acute myocardial infarction (AMI). A cross-sectional design was used, involving 121 caregivers of patients with AMI recruited through convenience sampling. Data were collected using a demographics questionnaire and the Health Literacy Questionnaire. Hierarchical cluster analysis was performed to determine health literacy profiles based on Health Literacy Questionnaire scores and sociodemographic characteristics. Six distinct clusters of health literacy profiles emerged from the analysis. Caregivers in cluster 1 exhibited the highest health literacy levels, whereas those in cluster 6 had the lowest health literacy scores with significant difficulties in understanding and using health information. Caregivers' sociodemographic factors such as age, gender, smoking status, and education level played a significant role in determining health literacy profiles. The study highlights the diverse health literacy profiles among caregivers of patients with AMI, emphasizing the importance of designing tailored interventions to address these differences to improve the health outcomes of caregivers and patients.

Factors influencing awareness of family caregivers on the potential health benefits of papaya (Carica papaya, 1753) leaves in dengue fever management

Dengue fever remains a major public health concern in the Philippines, particularly in endemic areas like Kalibo, Aklan. This study examines the factors influencing family caregivers' awareness of the potential health benefits of papaya (Carica papaya) leaves in managing dengue fever. Employing a quantitative, comparative-correlational research design, the study surveyed 349 family caregivers in a dengue hotspot barangay in Kalibo, Aklan, Philippines. Data were gathered using a validated, researcher-made questionnaire and analyzed through statistical tools, including descriptive statistics, Kruskal-Wallis test, Mann-Whitney U test, and Spearman’s rho correlation coefficient. The findings revealed that socio-demographic variables such as age, gender, education, and income significantly influenced awareness levels. Older caregivers and those with higher education demonstrated greater awareness of papaya leaves' benefits, while economic constraints often directed families toward alternative remedies. Technological factors, including access to online resources, and cultural influences within kinship and social factors also significantly shaped caregivers' understanding. Statistical analysis revealed significant differences in awareness when grouped by socio-demographic characteristics and highlighted correlations between influencing factors and awareness levels. Papaya leaves were recognized by the respondents for their therapeutic benefits, particularly in alleviating thrombocytopenia and enhancing immune response in dengue fever management. The findings emphasized the need for integrated health education programs and community-driven campaigns to promote informed and safe use of herbal treatments. By bridging traditional knowledge with evidence-based practices, the study contributes to enhancing caregiving practices and health outcomes in underserved areas in the Philippines.

Experiences of HIV and/or AIDS caregiving by informal caregivers and the experience of care in low- and middle-income countries: a qualitative systematic review protocol

Objectives: The objective of this review is to identify, appraise, and synthesize available evidence on the experiences of informal caregivers providing HIV and/or AIDS care and the experiences of care received by people living with HIV and/or AIDS (PLHIV) in sub-Saharan Africa. Introduction: PLHIV share the burden of the disease with their informal caregivers throughout their lives. Experiences of HIV- and/or AIDS-related caregiving and care receiving have a significant impact on the treatment and physiological health outcomes of both care receivers and caregivers. However, there is limited evidence regarding how caregiving approaches and caregiving experiences influence HIV and/or AIDS care. Inclusion criteria: This review will consider qualitative studies on informal caregivers providing HIV- and/or AIDS-related care and PLHIV receiving care in sub-Saharan Africa. Eligible studies will focus on positive and negative experiences of informal caregivers and PLHIV throughout the HIV/AIDS caregiving continuum. Methods: A comprehensive search strategy will be developed to retrieve relevant articles from Ovid MEDLINE (R), Embase (Ovid), PsycINFO (Ovid), and CINAHL (EBSCOhost). The review will be conducted by 2 independent reviewers using the JBI approach to perform study selection, critical appraisal, data extraction, assessment of confidence, and data synthesis. Review registration: PROSPERO CRD42023470996

Family Navigation Programs for Children With Autism Spectrum Disorder: A Scoping Review.

Family navigation (FN) programs are an integrated care delivery model for children with chronic conditions. However, there is a lack of synthesized evidence of FN programs for children with autism spectrum disorder (ASD). This scoping review aimed to map the current evidence to describe the characteristics and synthesize the effectiveness of FN programs for children with ASD. We searched the PubMed, Web of Science, Embase, CINAHL, PsycINFO, and ProQuest databases for studies published between 2011 and 2023. After duplicate records were removed, 2 researchers read the titles and abstracts and screened the full texts. Disagreements were resolved by a third researcher. Two researchers independently extracted the data and performed data synthesis in both tabular and narrative formats. Twenty-seven studies were included. The navigation activities included family assessment, service coordination, psychosocial support, health education, service advocacy, and logistic assistance. Navigators could be professionals or nonprofessionals with bilingual and bicultural backgrounds. FN programs accelerated service access from positive screening to definite diagnosis and to intervention initiation for children with ASD. Positive effects were also detected for the health outcomes of caregivers. The results were narratively synthesized because of the heterogeneity of the included studies. This study provides guidance for the development and implementation of future FN programs. The findings indicate that the inclusion of solid theoretical frameworks, consistent reporting of intervention components, and conduction of effectiveness-implementation mixed studies may facilitate the generalizability of FN programs in wider contexts.

Mental Health Outcomes in Caregivers of Individuals with Neurocognitive and Neurodevelopmental Disorders: A Quantitative Comparative Study of a Pakistani Cohort

Literature is scarce regarding the mental health outcomes of caregivers of individuals with neurocognitive and neurodevelopmental disorders, particularly when comparing caregivers of both disorders, specifically in Pakistan. This study aims to fill this gap, provide implications and policy recommendations, and contribute to future research. The mental health outcomes are operationalized as depression, anxiety, and stress. A cross-sectional correlational design and purposive sampling were used to collect data from caregivers of children with neurodevelopmental disorders (under 18) and caregivers of individuals with neurocognitive disorders (at least 65 years old). The study included 210 participants: 100 caregivers of individuals with neurodevelopmental disorders and 110 caregivers with neurocognitive disorders, with a mean age of 37.78 and a standard deviation of 9.62. The Depression Anxiety Stress Scale (DASS-21) was used to measure depression, stress, and anxiety. Findings revealed a significant positive relationship between stress, anxiety, and depression. An independent samples t-test showed that caregivers of individuals with neurodevelopmental disorders scored significantly higher on depression, anxiety, and stress than caregivers of individuals with neurocognitive disorders. The study discussed these findings about relevant literature and provided implications and policy recommendations for the social welfare of caregivers of individuals with neurodevelopmental and neurocognitive disorders.

Interventions to enable and reach patients with heart failure and their caregivers, with palliative care (TIER-HF-PC): a study protocol of a two-armed parallel group, open label randomised controlled trial that evaluates the effectiveness of a tiered model of palliative care in tertiary cardiac institutes in Singapore

IntroductionPalliative care (PC) improves quality of life (QOL). However, PC is currently delivered ‘too little, too late’ in heart failure (HF). Timely interventions to enable and reach patients with HF...

Sense of coherence, subjective burden, and anxiety and depression symptoms in caregivers of people with dementia: Causal dynamics unveiled by a longitudinal cohort study in Europe.

Sense of coherence, subjective burden, and anxiety and depression symptoms in caregivers of people with dementia: Causal dynamics unveiled by a longitudinal cohort study in Europe.

The effectiveness of dyadic interventions for health outcomes of prostate cancer patients and informal caregivers: a systematic review and meta-analysis

BackgroundProstate cancer is a worldwide health issue, and current prostate cancer care extends to the patient‒caregiver dyadic setting, where individuals are interdependent and interact with each other as well as possible negative psychological and behavioural outcomes. However, the impact of dyadic care interventions on health outcome indicators for prostate cancer patients and their informal caregivers has yet to be examined.AimTo describe the characteristics of dyadic interventions involving patients with prostate cancer and their informal caregivers and investigate their effects on psychosocial health, sexual health, and dyadic relationships.MethodsTen electronic databases (Web of Science, Cochrane Library, PsycINFO, PubMed, Embase, CINAHL, CNKI, Wanfang, VIP, and SinoMed) were thoroughly searched for related publications published between the database’s founding and April 2024. The risk of bias for the included studies was evaluated using the Cochrane risk-of-bias tool, and a meta-analysis was performed using RevMan 5.4.ResultsThis study identified and evaluated 19 RCTs reporting 22 different interventions, as well as outcome indicators for the three aspects of psychosocial health, sexual health, and dyadic relationships in prostate cancer patients and informal caregivers. A meta-analysis of pooled data revealed that for prostate cancer patients, the intervention improved dyadic coping (SMD95% CI [95% CI] = 0.22 [0.01;0.42], p = 0.04), and for informal caregivers the dyadic care intervention reduced anxiety (SMD95% CI [95% CI] = -0.35 [-0.65;-0.06], p = 0.02), enhanced self-efficacy (SMD [95% CI] = 0.22 [0.01;0.43], p = 0.04), and improved sexual functioning (SMD [95% CI] = 0.29 [0.05;0.54], p = 0.02). No statistically significant overall effects were observed for the other outcome indicators.ConclusionThe results of this review indicate that dyadic care interventions benefit prostate cancer patients and informal caregivers. However, given features such as research quality and sample size, further randomized controlled trials with excellent study designs are needed in the future to evaluate and validate the efficacy of dyadic care treatments for patients with prostate cancer.Trial registrationThe protocol for this study is registered in PROSPERO with registration number (CRD42024567542).

Efficacy of Supportive Care Interventions for Improving Posttraumatic Stress Symptoms and Resilience in Family Caregivers of Cancer-Affected Children: A Meta-Analysis of Randomized Controlled Trials.

The diagnosis of pediatric cancer is a major shock to family caregivers, and posttraumatic stress symptoms (PTSSs) emerge as the most prevalent adverse psychological outcomes. However, not all family caregivers have sufficient resilience to cope with these challenges; thus, supportive care interventions are necessary. These interventions, which include psychosocial support, education, and other forms of assistance, are designed to enhance the well-being of those affected by disease. In the past few years, more research has been delving into supportive care interventions for family caregivers of cancer-affected children, yet there is still a variance in the results. To investigate the impacts of supportive care interventions on PTSSs and resilience in family caregivers of cancer-affected children, also focusing on the impacts of prerecruitment time to diagnosis, duration, type of intervention, and recruitment area on the outcomes. Nine databases (Cochrane Library, Ovid MEDLINE, CINAHL Plus with Full Text, Embase, CNKI, Sinomed, WANFANG, VIP, and Web of Science) were searched from their inception to February 21, 2024. The revised Cochrane Risk of Bias tool and the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) method were used to evaluate the quality of evidence. To gauge the effectiveness of the interventions, we computed the standard mean difference (SMD) and the 95% confidence interval (CI) utilizing StataCorp (version 16.0). Sensitivity analysis and Egger's test were also conducted. Supportive care interventions significantly improved the PTSSs (SMD = -0.86, 95% CI [-1.39, -0.33], p < 0.01, I2 = 94.95%) and resilience (SMD = 0.85, 95% CI [0.26, 1.44], p < 0.01, I2 = 88.3%) among family caregivers of cancer-affected children. Subgroup analyses revealed that early interventions for family caregivers after the diagnosis of children and the short-term interventions were associated with improvements in their PTSS and resilience. Moreover, cognitive behavioral interventions were the most common type of interventions and were effective in supporting family caregivers. Additionally, supportive care interventions did not improve PTSSs among family caregivers in middle-income countries. Supportive care interventions have demonstrated efficacy in improving PTSSs and resilience among family caregivers of cancer-affected children. This research proved the imperative of providing prompt supportive care to family caregivers early after the pediatric cancer diagnosis. Additionally, it is also necessary to further study and explore the optimal way to combine different intervention components based on caregivers' need and to develop regionally adapted and culturally sensitive supportive care interventions to better improve health outcomes for family caregivers.

Factors which influence social connection among cancer caregivers: an exploratory, interview study

Background/aimsSocial connectedness is increasingly recognised as influencing health outcomes in cancer caregivers; however, there is little understanding of factors which foster feelings of social connectedness among caregivers when providing care. We sought to examine from the caregivers’ perspective, factors which contribute to perceived social connection when providing care to someone with cancer.MethodsSemi-structured interviews were conducted with 20 caregivers of people with cancer. Participants were recruited through social media and were eligible if they were aged 18 + years and had provided care to someone with cancer in the preceding 3 years. Data were analysed thematically using NVivo.ResultsFollowing thematic analysis of interview data, six overarching themes emerged detailing caregivers’ experiences with social support, networks, and connectedness. Themes included: people in caregivers’ social networks and communication frequency, supportive communication with people in social networks, challenges with talking with others and seeking support, receiving instrumental support from social networks, impact of the carer role on friendships and community activities, and factors which fostered perceived connectedness.ConclusionsFor caregivers of people with cancer, our qualitative findings suggest the importance of receiving emotional and instrumental support from social networks to cope with, and alleviate the stress and strain of providing care. Development and empirical testing of strategies and interventions that improve social support seeking and subsequently perceived connectedness among caregivers are recommended to improve health and wellbeing.

Caregiving Satisfaction, Psychological Distress and Caregiver Burden in Family Caregivers of Dependent Older People: A Longitudinal Study.

Although a substantial amount of research has focused on negative aspects of caregiving, less research has been conducted investigating positive aspects of providing informal care. The aim of this study was to investigate the longitudinal association between caregiving satisfaction and psychological distress in informal carers of dependent older people, and whether this relationship is mediated by caregiver burden. Prospective longitudinal study with a probabilistic sample of 332 caregivers of older relatives, with data collected at baseline and at 1-year follow-up. We measured caregiving satisfaction, psychological distress, subjective caregiver burden and several covariates (caregivers' sex, age and objective caregiver burden). Data were analysed using generalised estimation equations with multiple imputation. The STROBE checklist was used to support the writing of this document. After controlling for covariates, caregiving satisfaction was significantly negatively associated with lower levels of subjective caregiver burden (B = -0.17, 95% CI: -0.23, -0.11) and emotional distress (B = -0.23, 95% CI: -0.36, -0.11). When subjective burden was included in the model, the relationship between caregiving satisfaction and psychological distress was no longer significant (B = -0.11, 95% CI: -0.23, 0.02), whereas the association between subjective burden and psychological distress remained (B = 0.75, 95% CI: 0.57, 0.92). The Sobel test confirmed these results (p < 0.001), indicating that subjective caregiver burden mediates the relationship between caregiving satisfaction and psychological distress (complete mediation) over time. Caregiving satisfaction exerts a longitudinal protective effect on carers' psychological distress via subjective burden. Our findings indicate that interventions aimed at strengthening caregiving satisfaction may play a significant role in maintaining positive mental health outcomes for informal caregivers.

Helping Her Heal-Ghana: A pilot feasibility study of a culturally adapted educational counseling intervention for spouse caregivers of women with breast cancer.

Breast cancer is the leading cancer in Ghana, Africa, accounting for 31% of all cancers in women. The effects of breast cancer are not limited to the woman but also impact the spouse's anxiety, depressed mood, and coping behavior. Helping Her Heal (HHH)-Ghana is a culturally adapted evidenced-based intervention with potential to improve health outcomes of spouse caregivers. The purpose of the study was to ascertain the feasibility, acceptability, and short-term impact of HHH-Ghana, a culturally adapted evidenced-based intervention for spouses of women with breast cancer in Ghana. The study used a single group pre-post design. Participants (n = 14) were recruited from medical care providers and were eligible if they were spouse caregivers of wives with Stage I, II, or III breast cancer, were 18 years or older, and had been living with their wives for at least 6 months. Data were obtained by spouse self-report on standardized measures of depressed mood, anxiety, self-care skills, self-efficacy to support their wife, self-efficacy to carry out their own self-care, and the quality of marital communication about breast cancer. Exit interviews were additionally obtained to describe the gains spouses attributed to their participation in the study. The HHH-Ghana study was feasible and acceptable. Spouses actively engaged in each intervention session and completed the at-home assignments; retention was 87.5%. Spouses significantly improved on standardized measures of anxiety (p = 0.010), depressed mood (p = 0.002), self-care skills (p = 0.006), and their self-efficacy in supporting their wife (p = 0.001) and in carrying out their own self-care (p = 0.011). Although there was no statistically significant change in marital communication, spouses reported in their exit interviews that the intervention enabled them to communicate better and be more attentive listeners to their wives. Results warrant a larger clinical trial in Ghana.

Financial Toxicity in Older Adults With Cancer and Their Caregivers.

With advances in cancer treatment, long-term survival rates have improved in recent decades, resulting in extended life expectancies for many patients. This progress brings substantial challenges, however, particularly in terms of the costs associated with cancer care. The financial burden, often considerable, poses difficulties for older adults with cancer and their caregivers. Financial toxicity refers to the unintended financial consequences and distress that patients and families incur from cancer and its treatment. The prevalence of financial toxicity varies (some estimates with over half experiencing this challenge), and certain subgroups (eg, race other than White and those with lack of social support) are at greater risk. Although studies focusing on older adults are limited, existing research has shown that financial toxicity is associated with adverse outcomes, including delayed care, poorer physical, social, and psychological well-being, and lower overall quality of life. Moreover, financial toxicity may result in negative caregiver health outcomes, which can in turn affect patient outcomes. These negative caregiver effects may persist into the bereavement phase. Various methods are available to assess financial toxicity, and they consist of three domains: material, psychological, and behavioral. Available interventions focus on identifying those at risk and providing financial counseling, navigation, and literacy, as well as tangible assistance. Although the impact of financial toxicity is increasingly recognized, studies in older adults and their caregivers are lacking. A better understanding of their needs is important to develop interventions aimed at mitigating financial toxicity in older adults with cancer and their caregivers.

UNDERSTANDING THE IMPACT OF BPSD ON CAREGIVER HEALTH OUTCOMES FROM THE PARADIGM OF SOCIAL INTERACTION

Abstract Behavioral and Psychological Symptoms of Dementia (BPSD) in persons with dementia (PwD) is a crucial determinant of caregiver health outcomes. With increasing evidence on factors associating with BPSD, it is imperative to develop a theoretical model to elucidate the mechanisms behind this association. This study aimed to develop and test an integrative model based on an integrative stress and coping, stress-vulnerability, and the social interactional paradigm to explain the impact of BPSD on caregiver health outcomes. A total of 200 family caregivers of PwD were recruited from three tertiary hospitals in China. Validated questionnaires were used to measure the BPSD, caregivers’ expressed emotion (EE), their attribution about patients’ BPSD and neurotic personality. Dyadic relationship strain was measured. The caregivers’ health outcomes were captured by their health-related quality of life (HRQL) and depression. By using path analysis (AMOS 26.0), our findings indicated that BPSD independently predicted a higher level of depression and poorer mental HRQL of family caregivers. The explanatory pathways highlighted the roles of caregivers’ EE and relationship strain in mediating the impact of patients’ BPSD on caregiver depression (β=0.049, p&amp;lt;0.001) and mental HRQL (β=-0.037, p&amp;lt;0.001). Caregivers of higher neuroticism was even more susceptible to depression (β=0.033, p&amp;lt;0.001) and poorer mental HRQL (β=-0.025, p&amp;lt;0.001) and their maladaptive attribution, poorer emotional regulation and relationship quality aggravate the negative response to BPSD. These findings inform interventions would provide highly specific insights to increase the caregivers’ adaption to the BPSD in a dementia caregiving context.

EXTENDING THE FAMILY TREE: NEW FACES OF DEMENTIA CAREGIVERS

Abstract Research has predominantly focused on spouses and adult children as primary caregivers for individuals living with dementia. However, evolving family dynamics necessitate a critical examination of caregivers beyond this immediate circle. This symposium explores the understudied area of informal dementia caregiving, which includes care provided by extended family members, stepchildren, and chosen kin. This emergent focus is crucial in redefining the family caregiver archetype amid changing family structures. McConnell &amp; Haggar employ social network analysis to underscore variations in family/non-kin participation in care networks, influenced by factors such as disease severity and caregiver availability. Roberto &amp; Savla provide an in-depth exploration of historical and current family dynamics that shape niece and nephew caregivers’ responsibilities, practices, and outcomes. Savla &amp; Roberto address the individual and family challenges faced by older adult sibling caregivers, as well as identify factors that facilitate and impede their caregiving capacities. Silverstein et al. leverage longitudinal data to explore the impact of kinship strength and early relationship histories on stepchildren’s support for stepparents living with dementia. Flatt et al. synthesize insights from their multiple studies on the health outcomes of sexual and gender minority dementia caregivers within biological and chosen familial networks. Collectively, these studies underscore the complexity and diversity of caregiver roles within families, emphasizing the need for supportive programs and policies tailored to their unique circumstances. Findings serve as a call for action to recognize and support the wide range of dementia caregivers in today’s society who demonstrate remarkable resilience in navigating dementia care challenges.

VOICES OF CARE: INSIGHTS FROM DIVERSE CAREGIVERS

Abstract Recognized as the backbone of the U.S. healthcare system, informal caregivers face unprecedented challenges amidst an ongoing care crisis. Understanding the profound effects of informal care responsibilities is critical to the health and well-being of our society. According to AARP, in 2020, the number of individuals engaged in caregiving for an ill or disabled family member surpassed 53 million, up nearly 10 million since 2015. There is increasing evidence documenting that social inequalities often compound the negative health and financial outcomes for caregivers as they age, making research that focuses attention on the racial, ethnic, and cultural contexts that shape not only the caregiving experience, but also the outcomes that result, central to our ability to develop interventions. This symposium delves into the intricate realities of caregiving, providing valuable insights into economic, cultural, and health-related dimensions. It proposes solutions to positively influence the experiences of older adults, their families, and the broader healthcare system. The first paper explores the enabling factors and barriers African American women caregivers confront in seeking support. The second paper evaluates a digital storytelling intervention’s impact among African American caregivers. The third paper investigates the repercussions of caregiving on older workers’financial, health, and employment outcomes during the COVID-19 pandemic. The final paper reports a scoping review on the role of interpersonal factors in shaping health behaviors among Hispanic older adults. A discussant will reflect on these studies, underscoring the imperative for ongoing research encompassing diverse voices, methodologies, and the impacts on informal caregivers. Family Caregiving Interest Group Sponsored Symposium

PREVALENCE AND PREDICTORS OF LONELINESS AMONG CAREGIVERS BY CARE RECIPIENT’S LEVEL OF COGNITIVE IMPAIRMENT

Abstract Loneliness is increasingly being recognized as a public health issue. However, little is known about the prevalence or predictors of loneliness among caregivers in the United States (US). This study aimed to assess the prevalence and predictors of loneliness among US caregivers by the care recipient’s level of cognitive impairment. We conducted a cross-sectional study of caregivers for Medicare beneficiaries in the US using data from the National Study of Caregiving (NSOC). Caregivers were divided into three groups by the care recipient’s level of cognitive impairment: non-dementia, MCI, and ADRD caregivers. Logistic regression models were used to identify predictors of severe loneliness (defined as feeling lonely every day or most days) among caregivers. Sample weights were applied to all analyses. Overall, 8.5% of caregivers reported feelings of severe loneliness, equating to over 750,000 caregivers when sample weights were applied. The prevalence of severe loneliness was higher in dementia caregivers (13%) compared to MCI (7.4%) and non-dementia (7.1%) caregivers. Adjusted logistic regression models found dementia caregiving, being without a current partner, and reporting emotional difficulties with the caregiving role were significantly associated with severe loneliness. Increasing age and caring for a parent/other relative (vs spouse) were associated with reduced odds of loneliness. There was no difference in odds of severe loneliness by gender or race. Dementia caregiving is associated with an increased risk of loneliness. Future research is needed to understand how loneliness affects caregiver health and wellbeing outcomes and to develop interventions to address caregiver loneliness, particularly for dementia caregivers.

CARING FOR ONE, TWO, OR THREE GENERATIONS? PREVALENCE OF VARIOUS CAREGIVING ROLES AND CAREGIVER CHARACTERISTICS

Abstract With increasing diversification in household composition and living arrangements over recent decades, the roles of family caregivers have become more complex, sometimes requiring individuals to assume multiple caregiving responsibilities such as caring for both grandchildren and older parents. While caregiving can be a rewarding experience, it can negatively affect caregiver well-being, especially for those providing high-intensity care. Given that family caregivers are the backbone of our care system, it is crucial to understand who these caregivers are and their health and wellbeing. This study provides a profile of U.S. intergenerational caregivers using data from 2018 RAND Health and Retirement Study (HRS) family files and HRS core public files. We estimate the prevalence of four different caregiver types (i.e., caring for older parents only, spouses only, grandchildren only, and those filling more than one caregiving role) overall and by socio-demographic characteristics. We also compare the socio-demographic characteristics and health outcomes (e.g., self-reported health and depression) of different caregiver types to non-caregivers. Our results showed that one in three adults age 50 or older were caregivers, the majority of which only cared for one generation: grandchildren, spouses, or older adults. Approximately 14% of caregivers cared for multiple types of family members. Caregiver profiles and health outcomes vary by caregiver type. For example, spousal caregivers had the highest depression score compared to individuals only caring for grandchildren or older parents and those filling more than one caregiving role. This knowledge is essential for establishing a foundation for targeted interventions to support caregivers.

A TECHNOLOGY-BASED SUPPORT PROGRAM FOR ASIAN AMERICAN FAMILY CAREGIVERS OF PEOPLE LIVING WITH ALZHEIMER’S DISEASE

Abstract The negative impact of family caregiving on health outcomes of caregivers of persons living with Alzheimer’s Disease (PLAD) has been well documented. Especially, Asian American midlife women who are PLAD (AWPLAD) reportedly suffer from caregiving burden because of their cultural attitudes related to Alzheimer’s Disease and caregiving. The first technology-based culturally tailored information and coaching/support program (TACAD) was developed while considering their cultural attitudes. This is a part of a larger 2-phase, mixed-methods, exploratory study to preliminarily evaluate TACAD. Only the first phase is included in this presentation and the 2nd phase is ongoing. The first phase included an expert review and a usability test. The expert review was conducted among 5 experts in family caregivers of PLAD, and a usability test was conducted among 11 AWPLAD. The qualitative data from the expert review and usability text were analyzed using a content analysis. The expert review indicated the necessity of updates on the education modules with new information; shortening each educational module to have up to 10 slides; eliminating redundancies in the content; strengthening the cultural content; and changing the pictures to those with Asians. The usability test indicated the necessity of including more video clippings related to Alzheimer’s Disease and family caregiving; refining chat functions; and enlarging the font size. All the participants agreed that the program would be helpful and useful for AWPLAD and the program was well-organized and easy to follow. Further studies are warranted on culturally tailored technology-based interventions for this specific population.