National Family Caregiver Support Program Research Articles

Examining predictors of loneliness among Older Americans Act National Family Caregiver Support Program participants.

Family caregivers may be at particular risk for social isolation and loneliness. Multiple factors can impact caregivers' health and well-being outcomes, including loneliness. Guided by an adaptation of the Stress Process Model of Caregiving, this study uses the 2019 National Survey of Older Americans Act Participants (NSOAAP)-Family Caregiver Support module to inform efforts to reduce loneliness through family caregiver support programs. A hierarchical multiple regression model reveals that caregivers who report more loneliness are more likely to be female, Hispanic, living alone, not a child or other caregiver of the care recipient, have a care recipient with 3+ ADL needs, experience more social life conflict related to caregiving, experience less joy in caregiving, feel less appreciated by the care recipient, feel less support in caregiving, and attend counseling. This study helps advance the goals of the National Strategy to Support Family Caregivers, and the findings underscore the importance of continuing and expanding efforts to address loneliness and related well-being outcomes among family caregivers.

The Chosen Child: Characteristics of Family Caregivers Selected at an Early Age to Provide Care to Their Parents

AbstractBackground and ObjectiveFamily caregivers who have been chosen by their family for the caregiving role may be under a unique type of stress due to familism and/or lack of choice. The purpose of this exploratory analysis was to investigate the characteristics of family caregivers who self‐identified as the “Chosen Child” caregiver.MethodsWe used survey data from 652 child caregivers collected in December 2016 as part of the outcome evaluation of the National Family Caregiver Support Program (NFCSP). We compared the characteristics between the caregivers who responded “definitely true” when asked if they were chosen by their family as a child to provide care (“Chosen Child”) and the caregivers who answered “definitely false” to chosen child (DFCC).ResultsCompared to DFCC caregivers (n=214), Chosen Child caregivers (n=168) experienced emotional distress more often (p=0.009), were more likely to have annual household income ≤$40,000 (p=0.018), were less likely to be employed (p=0.009), and were less likely to have received respite care in the past 6 months from family or friends (p=0.009). The mean emotional distress score remained significantly different between Chosen Child and DFCC caregivers after adjusting for potential confounders (2.64 vs. 2.43, respectively).ConclusionFamily and friends should be aware that the Chosen Child caregiver may be at risk for emotional distress and may be hesitant to ask for respite care or other types of support. Interventions for the Chosen Child should help them seek support when needed.

A Systematic Review of Program Outcomes for the National Family Caregiver Support Program Using a Theoretical Approach

The National Family Caregiver Support Program provides grants to states with large populations of citizens ages 70 and older that are formal and informal caregivers to fund support for various services. The Child Welfare Information Gateway (2016) defined kinship caregiving as the full-time care and protection of children by relatives. The purpose of this study is to identify outcomes of state and community level programs initiated by the National Family Caregiver Support Program (NFCSP) that serves informal grandparent caregivers. Micro and macro frameworks of rational decision making, symbolic interaction, and agency theories were used in this study when determining program outcomes. Outcomes reported in this study were: (1) reduced isolation, (2) increased connection to resources, (3) increased independence/empowerment, (4) reduced stress, (5) lower levels of burden, (6) increased well-being, and (7) intergenerational reciprocity. The NFCSP is a significant first step in assisting this population and is an important federal program that provides much needed funding to Area Agencies on Aging (AAA) in support of grandparent raising grandchildren.

Retracted: A Systematic Review of Program Outcomes for the National Family Caregiver Support Program Using a Theoretical Approach

Retracted: A Systematic Review of Program Outcomes for the National Family Caregiver Support Program Using a Theoretical Approach

National Family Caregiver Support Program Participants' Recommendations to Boost Caregiver Supports

Most older adults prefer to age in place rather than moving to a long-term care (LTC) facility, but little is known about the factors that predict entry into LTC. This study sought to utilize administrative claims data to understand the predictors of LTC transitions using de-identified claims data from Medicare Advantage members in the UnitedHealth Group Clinical Discovery Database. We investigated LTC transitions of 250,587 adults (Mean age = 77, standard deviation = 7.75) between January 1, 2016 and December 31, 2019. Types of predictors for these transitions include aggregated medical data surrounding chronic conditions and frailty indices, as well as healthcare utilization and demographics in 2016 and 2017. We then fit data of these types to an extreme gradient boosting (XGBoost) model to predict long-term care transitions in 2018 and 2019 (ROCAUC = 0.84, accuracy = 0.84, precision = 0.68, and recall = 0.42). Frailty indicators, such as falls and fractures, mobility problems, dementia, and delirium, as well as osteoporosis are strong predictors of LTC transitions. These findings can be used to design interventions aimed at preventing LTC transitions and enabling older adults to age in place.

National Family Caregiver Support Program Participants' Recommendations to Boost Caregiver Supports

For more than 20 years, family caregivers have been supported through the National Family Caregiver Support Program (NFCSP) of the Older Americans Act (Title IIIE). The NFCSP provides information to caregivers about available services; assistance in gaining access to services; counseling, support groups and caregiver training; respite care; and supplemental services. In the 2019 National Survey of Older Americans Act Participants, 1,909 NFCSP caregivers were asked “What recommendations do you have for improving the service?” The resulting 748 open-ended responses were thematically coded. The thematic analysis yielded six major themes: Additional Resources, Staffing, Communication, Care Coordination, Quality of Services, and Eligibility. Sub-themes were identified for Additional Resources and Staffing. The most common sub-themes for Additional Resources were requests for more help or services (e.g., grocery shopping), increased funding or financial assistance, and more service hours (e.g., overnight or holiday care). The most common sub-theme for Staffing was the need for consistent staffing due to high turnover of staff. Chi-Squared tests and Fisher’s Exact tests indicated that there were no significant associations between any of the recommendation themes and the gender of the caregiver, employment status of the caregiver, or whether the care recipient has Alzheimer’s or dementia. Many of the themes align with results from a recent RAISE Family Caregiving Advisory Council Report. Recommendations from both sets of findings indicate ways that programs, services, and policies can be enhanced to support the needs of care recipients and caregivers.

How Lonely are Older Americans Act National Family Caregiver Support Program Participants?

Older Americans Act (OAA) family caregiver services connect family members caring for older adults with a diversity of community-based resources and supports. Social isolation and loneliness are known public health threats, and family caregivers may face greater vulnerability to loneliness given the often-intensive time demands of care provision. Policy stakeholders and aging services providers are increasingly focused on combating loneliness among older adults and family caregivers. To inform efforts to reduce loneliness, we conducted descriptive analyses to identify characteristics of the participants in the OAA National Family Caregiver Support Program associated with higher rates of loneliness, measured with the 3-item UCLA Loneliness Scale. Using data from the 2019 National Survey of Older Americans Act Participants, we examined how caregiver loneliness varied based on caregiver age, gender, income, race and ethnicity, living alone, rurality, and self-reported health, as well as care recipients’ health status and difficulties with ADLs. Among our sample of 1,824 family caregivers, rates of loneliness were high overall (70%). Loneliness was significantly higher for caregivers with poor health (71.4%), incomes less than $20,000 (75.3%), living alone (75.4%), aged 65 or older (73.2%), Hispanic caregivers (82.2%) and caregivers for care recipients with 3 or more ADLs (76.0%). Findings underscore the importance of increasing social engagement opportunities for family caregivers. Policies and programs focused on reducing caregiver loneliness should be accessible to all family caregivers but should prioritize outreach and engagement for groups at higher risk of loneliness.

Randomized Controlled Trial of the Caregiver Orientation for Mobilizing Personal Assets and Strengths for Self-Care (COMPASS) for Caregiving Journey: A National Family Caregiver Support Program in a Long-Term Care Insurance System

ObjectivesTo investigate the effects of a national support program on family caregivers for long-term care (LTC) recipients. DesignA single-blinded randomized controlled trial compared the 8-week Caregiver Orientation for Mobilizing Personal Assets and Strengths for Self-Care (COMPASS) program consisting of 6 individual in-home, 3 group support, and 2 telephone sessions with a multicomponent intervention, and a control group. Setting and ParticipantsIn total, 969 caregivers who were living with LTC recipients assessed as having a high caregiving burden in 12 Korean cities. MeasuresThe primary outcomes were depression, burden, and stress levels of caregivers, the secondary outcomes were caregiver self-efficacy, positive aspects of caregiving, social support, social activities, and health risk behaviors. These outcomes were measured at baseline and after the 8-week program, analyzed using modified intention-to-treat, per-protocol (PP), and non-PP analyses. ResultsThe modified intention-to-treat analysis revealed significant improvements in burden (effect size, = 0.010, P = .008), depression (ηp2 = 0.012, P = .003), and health risk behaviors (ηp2 = 0.010, P = .012) for the experimental group compared with the control group. However, there were no significant differences between the 2 groups in improving stress (P = .997), social support (P = .234), or social activities (P = .816). The PP analysis indicated that the COMPASS program was successful in increasing positive aspects of caregiving (ηp2 = 0.013, P = .004) and self-efficacy (ηp2 = 0.010, P = .032) compared with the control group. Conclusions and ImplicationsThe COMPASS program was effective in family caregivers of LTC recipients in critical aspects of physical and psychological outcomes, especially in demonstrating the important role of participating in group support sessions. It is feasible for the program to become a formal national support program as part of the national insurance system in Republic of Korea.

The Effect of National Family Caregiver Support Program Services on Caregiver Burden.

Extant evidence on the effectiveness of caregiver programs in alleviating caregiver burden is mixed, underscoring the need for further investigations. This study evaluated the effect of the National Family Caregiver Support Program (NFCSP) educational services and respite care on caregiver burden. We used survey data from caregivers assigned to program (n = 491) or comparison (n = 417) group based on their reported use of NFCSP services. Adjusted difference-in-differences (DiD) analysis found an increase in mean burden scores for both groups from baseline to 6 or 12 months. Among program caregivers receiving ≥4 hr of NFCSP respite care per week (n = 307) and matched comparisons (n = 370), burden scores decreased slightly for program caregivers (-0.095 points), but increased for comparison caregivers (+0.145 points). The DiD (0.239 points) was not statistically significant. More research is needed to determine the minimum amount of respite care needed to positively impact caregiver burden.

Predictors of Unmet Need Among Informal Caregivers.

This study investigates the relationship of caregiver demographics, caregiving intensity, caregiver support use, and aspects of the caregiving situation to a self-reported measure of unmet need among U.S. informal caregivers of older adults living at home with various conditions. Response data from 1,558 caregiver participants interviewed by telephone during the December 2016 baseline period of the Outcome Evaluation of the National Family Caregiver Support Program were used. Caregivers who responded "Definitely No" to the question "Are you receiving all the help you need?" were classified as reporting unmet need. Logistic regression was used to find significant factors associated with unmet need among the full sample and among caregivers tiered by three levels of burden. Unmet need was reported by 22% of the caregivers. In a fully adjusted model, unmet need was predicted by higher levels of caregiving intensity, non-White race of the caregiver, and the caregiver not feeling appreciated by their care recipient. Other predictors associated with unmet need were no use of caregiver educational services, fewer respite hours, not living in a rural area, and caregiver having an education past high school. Caregivers who do not feel appreciated by their care recipient and non-White caregivers should be identified as potential targets for intervention to address unmet need, especially if they are also reporting higher levels of caregiver burden. Understanding the factors associated with self-reported unmet need can assist caregiver support programs in measuring and addressing the needs of informal caregivers to support their continued caregiving.

FEDERAL POLICY EFFORTS TO SUPPORT FAMILY CAREGIVERS: PAST, PRESENT, AND FUTURE

Family caregivers are major providers of long-term care and support for family members with age-related decline and disability. Caregiving is a demanding and complex undertaking that has demonstrated extensive physical, emotional, relational, and financial burden on families. These factors underscore the urgency of addressing the needs of family caregivers at the policy level. This presentation focuses on the origins, goals, and mandates of federal policy efforts that support family caregivers. This includes an analysis on how federal support for caregivers has evolved over time, most notably through the National Family Caregiver Support Program, part of the Older Americans Act. It will also discuss the passage of more recent legislation (e.g., RAISE Family caregiver Act and the Grandparents Raising Grandchildren Act) that will contribute to a national strategy to support family caregivers. Moreover, through the discussion of these policies, we will articulate specific areas where gerontology research and public policy can and should intersect in order to optimize the effectiveness of policy efforts to support family caregivers.

POLICY SERIES: NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM: EVALUATION RESULTS AND PRACTICAL APPLICATIONS

Established in 2000, the National Family Caregiver Support Program (NFCSP) of the Older Americans Act Title III-E is administered by the Administration on Aging within the Administration for Community Living (ACL). The NFCSP supports caregivers through grants to States and Territories for a range of services that assist unpaid family and friend caregivers to care for someone at home for as long as possible. A growing expectation for quality federal programs is a requirement for rigorous evaluation. This session will highlight results of from the first national evaluation of the NFCSP. The first paper sets the stage by describing NFCSP services, participating caregivers, funding levels, and the rationale for the recent process and outcome evaluations. The second paper, focusing on results of the Process Evaluation, highlights program operations based on results of surveys with State Units on Aging, Area Agencies on Aging (AAAs), and Local Service Providers. The third paper presents the experience of Massachusetts, and how NFCSP is integrated with other programs in the state to support family caregivers. The final paper takes a multi-level approach by combining data from the process study and the caregiver outcomes study to look at the association between AAA assessment processes and outcomes of caregivers. To close the session, an expert in federal policy related to unpaid family caregiving will lead discussion about next steps for researchers, practitioners, and policy makers in light of the evaluation results.

Factors Associated With Caregivers’ Use of Support Services and Caregivers’ Nonuse of Services Sought

ABSTRACTInformal caregivers may face barriers accessing services like respite care, training, and support groups. Using multinomial logistic regression, I modeled caregivers’ probability of using all services sought (“all services used”) and nonuse of any services sought (“any unused services”) as a function of caregiver and care-recipient characteristics. Care-recipient health and function, especially dementia and need for medical task assistance, were associated with all services used and any unused services, and any unused services were more likely among adult children caring for their parents, caregivers of Black and Hispanic older adults, caregivers providing intensive care, caregivers living in metropolitan areas, and residents of states that spend more on increasing access to caregiver services under the National Family Caregiver Support Program. Regularly scheduled caregiving was associated with higher likelihood of all services used, but not with any unused services. Steps should be taken to increase access for caregivers who provide intensive care, care to dementia patients, or assistance with medical tasks and for Hispanic families.

Progress and Policy Opportunities in Family Caregiver Assessment: Results From a National Survey.

Family caregivers play an essential role in long-term services and supports (LTSS). Despite numerous calls for robust caregiver assessment policies to determine needs and treat them as partners in care planning, there has been limited information about whether or how states assess caregiver needs and strengths, or use caregiver information. Using cross-sectional survey data from the 2015 Process Evaluation of the Older Americans Act National Family Caregiver Support Program (NFCSP), this study analyzes caregiver assessment policies and practices in 54 State Units on Aging, 619 Area Agencies on Aging, and 642 local service providers. It examines whether and for what purposes caregiver assessments are used, what domains are included, and how well current policies conform to recommended practice. It also recommends that policy makers who influence NFCSP and other LTSS programs develop caregiver assessment practices using a multidimensional framework including more caregiver-focused domains and utilizing assessment data to measure program outcomes.

A Study on Family Caregiver Support Programs in the U.S.A.: The Case of the State of Georgia

This is a descriptive study that introduces programs that support family caregivers looking after the elderly, by focusing on the case of Georgia, in the United States. The U.S. is one of the few countries that support family caregivers by law. In this study, we focus on the evidence-based interventions implemented through the Alzheimer`s Disease Supportive Services Program (ADSSP), a federal policy that complements the National Family Caregiver Support Program (NFCSP). Our findings show that one-on-one evidence-based programs (EBPs) for family caregivers are both economical and effective in assisting caregivers. In our discussion, we highlight how the implementation of the latest EBPs can build an infrastructure to support family caregivers. ADSSP funding is useful as it constructs a caregiver support through the implementation of programs in the local community. The result is the creation of a well-coordinated division of labor among government agencies, academia and NGOs, which produces a synergetic effect in funding, research and development, translation and implementation of programs, and staff training. We conclude that the implementation of EBPs funded by the government is a useful reference for Korea and other rapidly aging countries, if we are to create an infrastructure for caregiver support, which can effectively prevent a crisis in caregiving.

Recovering from a stroke: A narrative review on post-stroke anxiety treatment and management

Recovering from a stroke: A narrative review on post-stroke anxiety treatment and management

Will Rest for the Weary Wear Everybody Out?

Will Rest for the Weary Wear Everybody Out?

Viewing the National Family Caregiver Support Program through The Family Impact Lens

Families are the major provider of long-term care and support for the functionally dependent elderly. The provision of this care, however, can exact an emotional, physical, and financial toll. The National Family Caregiver Support Program (NFCSP), established in amending the Older American Act in 2000, provides grants to states and territories to fund a range of supports that assist families in caring for dependent elderly persons at home for as long as possible. A family impact analysis of NFCSP provides several lessons and implications for those who design, implement, and study family caregiving. An analysis of this legislation using the family impact lens provides evidence, albeit indirect, that support services funded under the NFCSP can reduce caregiver depression, anxiety, and stress and enables them to provide care longer, thereby avoiding or delaying the need for costly institutional care.

Families and Elder Care in the Twenty-First Century

Although most Americans know that the U.S. population is aging, they are far less informed about the reality of providing elders with personal care, health care, and social support. Families-particularly women-have always been critical in providing elder care, but the entry of so many women into the paid labor force has made elder care increasingly difficult. Ann Bookman and Delia Kimbrel show how changes in both work and family life are complicating families' efforts to care for elderly relatives. Because almost 60 percent of elder caregivers today are employed, many forms of caregiving must now be "outsourced" to nonfamily members. And because elders are widely diverse by race and socioeconomic status, their families attach differing cultural meanings to care and have widely different resources with which to accomplish their care goals. Although the poorest elders have access to some subsidized services, and the wealthiest can pay for services, many middle-class families cannot afford services that allow elders to age in their homes and avoid even more costly institutional care. Six key groups--health care providers, nongovernmental community-based service providers, employers, government, families, and elders themselves--are engaged in elder care, but their efforts are often fragmented and uncoordinated. All six groups must be able to work in concert and to receive the resources they need. Both employer and government policies must be improved. Although large businesses have taken up the elder care challenge, most small and mid-sized firms still do not offer flexible work arrangements. Social Security and Medicare have provided critical support to families caring for elders, yet both face significant financial shortfalls. The Older American Act and the National Family Caregiver Support Program have broadened access to elder services, but need updating to address the needs of today's employed caregivers and elders who want to "age in place." And just over half of the nation's workforce is eligible for the unpaid leave benefits provided by the Family and Medical Leave Act. The authors close by reflecting on the need for a coordinated, cross-sector movement to create an "aging-friendly" society in the United States-a society that values well-being across the life span and supports citizens from diverse cultures and income levels as they age.

Predicting In-Home Respite Utilization by Family Caregivers of Older Adults: Results of a Community Study

This longitudinal study applies the behavioral model of health services use (Andersen, 1995) to the prediction of in-home respite utilization within the naturalistic context of ongoing respite services. Participants ( N = 74) were family caregivers who provided informal care for a physically and/or cognitively impaired older adult. All participants resided in the Midwest and received in-home respite services managed by an Area Agency on Aging and funded through the National Family Caregiver Support Program. The primary significant predictor of 3-month in-home respite utilization was the caregiving dyad’s past in-home respite usage. Contrary to prior research, demographic predisposing variables (relationship type, household income) and objective need variables (behavioral dysfunction, functional impairment) were not associated with hours of respite use over 3 months, nor was level of caregiver depressive symptoms. Implications of these data for case management, the provision of in-home respite services, and future research are discussed.