Experiences of Informal Caregivers of Older Adults Transitioned From Nursing Homes to the Community Through the Money Follows the Person Demonstration

This study examined experiences of 156 informal caregivers of older adults who transitioned to the community through the Connecticut Money Follows the Person (MFP) Rebalancing Demonstration after prolonged nursing home stays. Caregiver burden, positive aspects of caregiving, depressive symptoms, anxiety, and comparative subjective stress were examined in relation to caregiver demographics and care receiver characteristics with a cross-sectional survey. Caregivers reported low burden, depressive symptoms, and anxiety, and fairly high levels of positive aspects of caregiving and satisfaction with community services. Most caregivers were less stressed compared to the time the care recipient was in, or before they entered, a nursing home. Live-in caregivers experienced more positive aspects of caregiving, but adult children reported higher burden than other caregivers. Unmet service needs also increased caregiver burden. Programs like MFP are a viable option with broadly positive outcomes from a caregiver’s perspective. Enthusiasm for increasing access to community care is growing for older adults who otherwise would reside in nursing homes for extended periods. Identifying unmet service needs and needs for targeted functional support could further enhance caregiver experiences and contribute to the successful transition of older adults to the community.     

The influence of caregiving stressors, social support, and caregiving appraisal on marital functioning among African American wife caregivers

Using a stress and coping framework, we examined the influence of caregiving stressors, social support, and caregiving appraisal on the marital functioning of 100 African American wife caregivers. Results of separate multivariate analyses revealed received church support, caregiving burden, and caregiving satisfaction significantly predicted wives' marital functioning, when caregivers' background characteristics (age and education), length of caregiving, whether first marriage, and urban versus rural location were controlled. Receiving church support was associated with increased marital functioning. Lower levels of caregiving burden were associated with increased marital functioning. Higher levels of caregiving satisfaction were associated with increased marital functioning. Findings illuminate wives' caregiving and marital experiences, and have implications for family therapy and future research.     

Racial and Ethnic Differences in Family Caregiving in California

Abstract

Family caregivers are the main source of long-term care for older persons in the United States. At the same time, cultural values and beliefs shape decisions surrounding who provides care and whether families use formal support interventions to assist the caregiver. The current article examines how the family caregiving experience differs among racial and ethnic groups in terms of caregiver characteristics, service utilization, caregiver strain, and coping mechanisms. Telephone interviews were conducted in English and Spanish with a random sample of 1,643 respondents in California who provide care to someone age 50 or over. Bivariate analyses showed evidence of ethnic differences in the demographic characteristics of caregivers, intensity of care provided, caregiver health, level of financial strain, religious service attendance, formal service utilization and barriers to formal services. Odds ratios showed that White and African American caregivers were about two times as likely to use formal caregiver services as were Asian/Native Hawaiian/Pacific Islander and Latina American caregivers. Implied by these findings is the need for further understanding of caregiver service needs among diverse racial and ethnic groups.     

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

Informal 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.     

“No Matter What I Do They Still Want Their Family”: Stressors for African American Grandparents and Other Relatives

Grandparents and other relatives increasingly assume the role of primary caregiver to minor children. This study interviewed family members caring for children whose parents were not available due to parental incarceration, other involvement in the criminal justice system, and substance abuse-related issues. Interviews with 25 African American women examined the impact of caregiving including stress and depression. Stress included caregiver issues related to finances, time allocation, care responsibilities, and concerns about the absent parent, as well as issues specific to the children related to school concerns, child behavior, and emotional problems. These stresses were examined along with caregiver depression scores using the Center for Epidemiological Studies Depression Scale, which indicated more depression related to caregiver illnesses, older caregivers, and care for older and a larger number of children. This study suggests that caring for these children is both challenging and stressful, and caregivers are at risk for depression and other mental health concerns. Health and service providers should carefully assess the needs of caregivers when determining the needs of families where children are under care of nonparental relatives. Family-based services are needed that include caregiver supports as well as support for children.     

Kinship care and service utilization: A review of predisposing,enabling, and need factors

Research has shown that relative caregivers are less likely to use formal supports and services than non-relative foster parents. However, less is known about factors influencing kinship caregivers' help-seeking behaviors and service use. This systematic review identified research studies examining factors associated with service use among kinship caregivers using key search terms in five computerized bibliographic databases and four journals. The search identified 337 potentially relevant studies. After screening and study eligibility assessments, a final sample of 13 studies was reviewed. Findings suggested that although children and their kinship caregivers were clearly in need of services, service use was low. Results suggested a need for more rigorous research designs and that the following factors may influence service use: child behavioral problems, caregiver mental health status, resources, provider characteristics, caregiver perceived need, and social support. More research examining help-seeking behaviors, perceptions of formal services, and effectiveness of kinship caregiver services in relation to child outcomes is needed to improve the wellbeing of kinship families in the child welfare system.     

The Role of Appraisal and Expressive Support in Mediating Strain and Gain in Hispanic Alzheimer's Disease Caregivers

Abstract

The purpose of this study was to examine how appraisal of burden and satisfaction, and perception of expressive support mediate the effects of caregiving on depression, somatic complaints, life satisfaction and personal gain with a sample of Hispanic Alzheimer's disease (AD) primary caregivers. A purposive-snowball sampling technique was used to identify 103 Hispanic caregivers, who completed a self-report questionnaire. A translation-back-translation process was used to translate the instruments into Spanish. Translated instruments were then pilot tested prior to being administered to the participants. Appraisal of burden was found to mediate the effects of caregiving on depression and somatic complaints and had significant direct effects on life satisfaction. Appraisal of satisfaction did not have a mediating effect on any of the measures, but did have a direct effect on depression and personal gain. Expressive support did have a mediating effect on depression, as well as direct effects on somatic complaints and life satisfaction. These findings suggest a need for improving outreach to older minorities and developing culturally sensitive interventions that can improve caregivers' understanding of problematic behavior, thereby altering appraisal of the situation, as well as developing extended systems of support.     

Exploring nonoffending caregiver satisfaction with a Children's Advocacy Center

This study is a case evaluation research report on one Children's Advocacy Center that provides a coordinated response to allegations of child maltreatment, particularly sexual abuse. The data come from a mailed survey of nonoffending caregivers measuring their satisfaction with services provided through the Children's Advocacy Center. The results indicate overall satisfaction with the Children's Advocacy Center; however, they also suggest that the forensic interview may be perceived or experienced as distinct from the ongoing investigative and legal processes. Recommendations are made to better assess nonoffending caregiver satisfaction with Children's Advocacy Center services and to encourage consumer driven service improvement.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Perceived overload as a predictor of physical strain among spousal and adult child caregivers of frail elders in the community

ABSTRACT

Family caregivers of frail elders can experience physical strain associated with caregiving. Identifying correlates of caregiver strain can provide an important impetus for tackling the causes and providing effective interventions. Utilizing data from the 1999 National Long-Term Care Survey, the current study examined correlates of caregiver physical strain among 956 family caregivers, using the stress process model. As multiple regression analyses indicated, the caregiver’s perceived overload predicted greater strain for both spousal and adult child caregivers. For both groups, common correlates of physical strain were caregiving demands, the caregiver’s perceived overload, and limitations placed on the caregiver’s life. The results demonstrate that the family relationship of the caregiver (spouse or adult child) leads to variations and dynamics in caregiver strains, due to qualitatively different relationships.     

Sense of Need for Financial Support and Respite Services among Informal Caregivers of Older Americans

ABSTRACT

Financial support and respite services are two of the most frequently reported types of help that caregivers of older adults need. Using an expanded health behavioral model, this study examined the effects of predisposing, enabling, and needs factors on caregivers' sense of need for these two types help. Data were drawn from the 1999 National Long-Term Care Survey and included 1,058 caregiving dyads in the community. The results indicated that caregiver-related factors more than care recipient–related factors affected caregivers' sense of need to seek both types of help. The findings direct to two important implications for long-term care policy for and practice with older adults: improvement of service for caregivers and service delivery systems.     

Caregiving transitions: Developmental and gendered perspectives

Providing care for family members is a life event that both reflects and influences family dynamics. Caregiving careers, or the length of time a person provides care, are characterized by a series of transitions to which they must continuously adapt. Women are more likely than men to assume the caregiver role and this role encompasses gender inequalities associated with work and caregiving expectations. This article presents qualitative data from interviews conducted with caregivers who participated in a community-based supportive services program. The experiences of these women provide insight into how caregivers transition into their role, strategies for supporting new and experienced caregivers, and their concerns for their future. Developmental and gendered perspectives of caregiving were used as a context to analyze their experiences.     

Availability of caregiver support services: implications for implementation of the National Family Caregiver Support Program

This study examines the scope and range of existing resources for family caregivers from the perspective of the Area Agencies on Aging (AAAs), which are charged with implementing Title III-E of the reauthorized Older Americans Act. California is used as a case example because of its substantial experience in providing caregiver support services. In particular, we examine the extent and adequacy of resources available in California corresponding to each of the five Title III-E service areas, utilizing data from AAAArea Plans, a follow-up survey of AAAs, and an Internet search. AAAs identified more than 276 providers of caregiver support services, and our Internet search identified another 195. Nearly two-thirds of these programs offer access to respite care, while other support services (e.g., counseling, training, support groups) are less often available. Service gaps most frequently identified included culturally and linguistically appropriate caregiver services, transportation, respite care, financial assistance, and services in rural areas. These findings suggest the need for enhanced efforts to improve the service network for supporting family caregivers, as states implement the National Family Caregiver Support Program.     

Restorative home environments for family caregivers

Caregiver stress negatively affects caregiver health and the overall quality of in-home caregiving. While environmental interventions such as home modifications help caregivers manage stressful functional aspects, interventions for managing stressful emotional aspects are unexplored. Frequently, caregiving responsibilities restrict caregivers' spatial and temporal range of restorative activities to their familial residential environment. In a first attempt to explore the restorative potential of a house in which caregiving occurs, this paper reports experiential attributes of restorative environments from environmental psychology and healthcare design research. It discusses the relevance of restorative attributes to the socio–physical residential context of caregiving using three caregiver needs: need for a temporary escape, meaningful social support, and a sense of control. This conceptual exploration of the restorative potential of the residential caregiving environment offers a base for investigating targeted architectural and functional interventions that might complement current advances in home modifications and respite services.     

What Are Strategies to Advance Policies Supporting Family Caregivers? Promising Approaches From a Statewide Task Force

Family caregivers are the cornerstone of the long-term supports and services infrastructure in the United States, yet they often contend with many challenges related to this role. Public policy has been slow to change, leaving many caregivers vulnerable to health and economic consequences. Using models of policy making, we identify barriers to advancing policies that support family caregivers and overcome policy drift. We draw on discussions from the California Task Force on Family Caregiving as it prepares state policy recommendations. Identified strategies include identification of caregivers in health care and workplace settings to promote political consciousness raising, collecting and reporting on data that frame caregiving as a policy problem, borrowing policies and language from overlapping fields to emulate their policy successes, and presenting supportive caregiver policies as solutions to other policy problems. By presenting specific strategic approaches to advance caregiving policies, we provide tools to address the growing gap between caregiver needs and policy responses.     

Preliminary experiences of the states in implementing the National Family Caregiver Support Program: a 50-state study

Despite increased attention to policy choices to support family and informal caregivers, relatively little is known about states' experiences in providing caregiver support services. This article reports on the first nationwide survey of all 50 states and the District of Columbia in providing caregiver services since the passage of the National Family Caregiver Support Program. State program administrators reported that their program differs from other home and community-based services because of the explicit focus on the family or informal caregiver. Results suggest that despite an increasing availability of caregiver supports in all 50 states, there is also a great unevenness in services and service options for family caregivers across the states and within states.     

Gay Bars and Serendipity

Abstract

HIV/AIDS continues to be a serious public health issue. As HIV changes from an acute disease to a more chronic illness, it places increased responsibility on family caregivers to provide on-going assistance. Based on a conceptual model of caregiving resilience, this study found high variation in caregiving outcomes with many caregivers demonstrating high levels of well-being despite adverse life circumstances. Factors that contributed significantly to caregiver well-being included income, caregiver health, discrimination, multiple loss, dispositional optimism and self-empowerment. These findings suggest that HIV/AIDS and caregiving entail more than stress and distress and that future research needs to consider caregiving within the context of a historically disadvantaged community, resilience of informal caregivers, and risk and protective factors at the personal, cultural and community levels. Such information is necessary to design community-based interventions to support informal caregivers and persons living with HIV/AIDS.     

Social Support and the Mental Health of Family Caregivers: Sons and Daughters Caring for Aging Parents in Japan

The prevalence of depressive symptoms among family caregivers has been documented as a serious social problem that could threaten the lives of the elderly and their family caregivers. Social support is considered to be a promising remedy for this problem, although a comprehensive examination of the availability and effectiveness of social support that includes both formal and informal support across multiple dimensions remains limited. In addition, little research has been conducted in Japan on gender differences in stress processes. This study tried to fill those gaps by analyzing recent survey data on sons and daughters who are caring for their elderly parents. The results indicate that sons and daughters have similar levels of formal and informal support for daily care and advice, while there are some gender differences in regard to the availability of other types of social support. It was also found that many types of informal support were significantly associated with a lower caregiver burden for daughters, although this was not necessarily the case for formal support. General instrumental support from formal sources was even associated with higher levels of distress. For sons acting as caregivers, daily caregiving support was the only formal support that was significantly associated with their lower level of distress. Issues of formal support are discussed, in order to reduce the psychological burdens borne by sons and daughters who care for their parents at home.     

Availability of Caregiver Support Services

Abstract

This study examines the scope and range of existing resources for family caregivers from the perspective of the Area Agencies on Aging (AAAs), which are charged with implementing Title III-E of the reauthorized Older Americans Act. California is used as a case example because of its substantial experience in providing caregiver support services. In particular, we examine the extent and adequacy of resources available in California corresponding to each of the five Title III-E service areas, utilizing data from AAA Area Plans, a follow-up survey of AAAs, and an Internet search. AAAs identified more than 276 providers of caregiver support services, and our Internet search identified another 195. Nearly two-thirds of these programs offer access to respite care, while other support services (e.g., counseling, training, support groups) are less often available. Service gaps most frequently identified included culturally and linguistically appropriate caregiver services, transportation, respite care, financial assistance, and services in rural areas. These findings suggest the need for enhanced efforts to improve the service network for supporting family caregivers, as states implement the National Family Caregiver Support Program.     

Facilitating Mental Health Service Use for Caregivers: Referral Strategies among Child Welfare Caseworkers

Unmet needs for mental health care are common among caregivers involved in the child welfare system. Although child welfare caseworkers are well positioned to identify service needs and refer caregivers to treatment, little is known about the types of referral strategies used in practice, or their effectiveness for promoting mental health service use. The current study examined child welfare caseworkers' use of different referral strategies and the extent to which these strategies are associated with caregivers' receipt of mental health services within a national sample of child welfare cases. Analyses of the second cohort of families from the National Survey of Child and Adolescent Well-Being suggest that child welfare workers more often use informational strategies for referring caregivers, including suggesting treatment or providing information about treatment options. However, social referral strategies such as providing caregivers with direct assistance in completing applications and making and attending appointments were associated with a greater likelihood of caregivers receiving mental health services. Findings support evidence from other service contexts that service use is facilitated by caseworkers' direct support for arranging services. Implications for research and for child welfare managers and administrators are discussed.