Inclusion of Caregiver Supports and Services in Home- and Community-Based Service Programs: Recent Reports from State Units on Aging

Caregivers have an important role in assisting frail and/or disabled individuals to maintain their independence in the community. Support to assist caregivers in this often stressful and demanding role is critical to sustaining the caregivers' health and ability to provide care. This paper reviews federal policy changes since 2000 that have expanded and enhanced services for informal caregivers. Next, data collected from State Units on Aging and other state agencies are presented to describe the extent to which caregiver services are included in home- and community-based programs under three funding streams (Medicaid waivers, Centers for Medicare and Medicaid Services–funded programs, and state-funded programs). Program characteristics, such as eligibility and consumer-directed options, are included. Finally, the accomplishments and initiatives reported by state respondents related to supporting informal caregivers are also explained. Results indicate that services for informal caregivers are receiving greater attention and are frequently offered under home- and community-based service programs by the states that participated in this study.     

Inclusion of caregiver supports and services in home- and community-based service programs: recent reports from state units on aging

Caregivers have an important role in assisting frail and/or disabled individuals to maintain their independence in the community. Support to assist caregivers in this often stressful and demanding role is critical to sustaining the caregivers' health and ability to provide care. This paper reviews federal policy changes since 2000 that have expanded and enhanced services for informal caregivers. Next, data collected from State Units on Aging and other state agencies are presented to describe the extent to which caregiver services are included in home- and community-based programs under three funding streams (Medicaid waivers, Centers for Medicare and Medicaid Services-funded programs, and state-funded programs). Program characteristics, such as eligibility and consumer-directed options, are included. Finally, the accomplishments and initiatives reported by state respondents related to supporting informal caregivers are also explained. Results indicate that services for informal caregivers are receiving greater attention and are frequently offered under home- and community-based service programs by the states that participated in this study.     

Depression and Missed Work among Informal Caregivers of Older Individuals with Dementia

Although providing informal care can negatively affect caregiver emotional health and lead to depression, the association between caregiver depression and missed work is unknown. We use data from the National Longitudinal Caregiver Survey to examine the relationship between caregiver depression and missed work among informal caregivers for older veterans with Alzheimer’s disease or vascular dementia. Two-part models are used to estimate the expected hours of work missed among working caregivers. Caregiver depression is statistically significantly associated with the likelihood and amount of time missed at work, resulting in an average of an extra half-day of work missed per month. While the effect of caregiver depression on work missed is modest, it represents another possible benefit from interventions to support caregivers.     

Informal Care Intensity and Caregiver Drug Utilization

Providing informal care has negative health consequences for informal caregivers. If these health consequences increase drug utilization among caregivers, estimates of health care savings from informal care—mainly realized through reductions in utilization among care recipients—should consider the increased drug costs incurred by informal caregivers. This paper evaluates whether more intensive informal caregivers have higher drug utilization than less intensive caregivers, controlling for initial health status and other factors. We find that informal care intensity is associated with higher drug consumption. An increase of 10% of total informal care per day is associated with a 0.7% increase in drugs. The small magnitudes indicate that, in this application, it is not important to consider caregiver drug utilization when quantifying the net savings to the health care system of informal care. For individual caregivers, such as those who take multiple drugs per month and/or have no drug coverage, the increase in drug utilization associated with intensive caregiving is likely to be costly.     

Dementia Problem Behavior and the Production of Informal Caregiving Services

Informal caregivers of individuals with Alzheimer's disease spend a considerable amount of time providing care. In this paper, we use Grossman's health production and Becker's time allocation models to develop a model of informal care provision to elderly dementia patients. In our model, time inputs produce caregiving services, which provides utility to the caregiver, but reduces leisure. We assume that time is less productive of services on the margin as the disease progresses. In this framework, an increase in patients' disease severity does not necessarily increase informal caregiver time input. The cost of formal care establishes a reservation price for informal caregiving. When the costs of informal caregiving rise above this reservation level, the patient is institutionalized. We test empirically the effect of deterioration in the patients' condition, proxied by both disease severity and dementia problem behavior, on informal caregiving time. We find that dementia-related problem behaviors and functional limitations significantly increase inputs of informal caregiving time. Patients' problem behavior exerts a modifying effect on functional limitations, and patients' comorbidities have no effect on informal caregiving time.     

African American Informal Support Networks

Abstract

This study examined African American informal support network functioning utilizing Vaux's (1998) reciprocal exchange model. Ten African American caregivers of relatives with severe mental illness and their main informal helpers were interviewed using a semi-structured questionnaire. In 8 of the 10 African American families interviewed, one close relative, called a “main supporter,” assumed major responsibility, comparable to that of the primary caregiver, for care and supervision of the family member with mental illness. Main supporters felt that their family helper role, although stressful at times, gave meaning and purpose to their lives. Five main supporter-primary caregiver pairs formed 'joint households' to share economic and human resources and to facilitate caregiving duties. Social work intervention for caregiving families should provide assistance to both primary caregivers and their informal supporters, particularly main supporters.     

Informal care and support for carers in Sweden: patterns of service receipt among informal caregivers and care recipients

This study describes and analyses the kinds of support received by different categories of informal carers, and the kinds of help that care recipients receive in addition to that provided by various categories of carers. Data were collected in a Swedish county in 2000, by means of telephone interviews. The net sample consisted of 2,697 individuals 18–84 years old, and the response rate was 61%. The results showed that relatively few carers in any care category received any kind of support aimed directly at them as carers. The most widespread form of support received by providers of personal care was relief services. Those most likely to be receiving care from the public care system were people also receiving personal care from an informal caregiver. Nevertheless, the majority of those receiving personal care from an informal carer did not receive any help from the public care system or from voluntary organizations or for-profit agencies. These results indicate that social policy and social work need to clarify the aims of the services they provide. They also need to take the needs of both caregivers and recipients into account when discussing support systems.     

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.     

A review of the biopsychosocial aspects of caregiving for aging family members

With the ever-increasing growth in the aging population, the need for care providers will also continue to rise. Many of these caregivers will provide informal care to family members and friends at a price to their own physical, psychological, and social well-being. This article examines the phenomenon of caregiving and provides a review of the biological, psychological, and social impacts of caregiving to care providers. George Engel’s biopsychosocial model is explored to examine the biological, psychological, and social factors that can affect a caregiver’s health and well-being. This article further explores social work practice implications and strategies for future intervention to reduce caregiver burnout and aid in their self-preservation.     

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.     

Caregiving for the Elderly Person: Discourses Embedded in the Brazilian Practical Guide for the Caregiver

It is estimated that in 2025, Brazil will have the sixth largest elderly population in the world. Beyond the economic consequences of this projection, this changing demographic portends significant changes in the social realm. The aim of this study was to review and consider a range of government documents, developed during the past thirty years and directed toward elderly Brazilian citizens, to explore the ways that caregivers of older persons are positioned in daily care practices through the discourses such documents deploy. The analysis draws on Foucault’s genealogical approach, and begins with a review of the historicity of policies, regulations, and legislation related to older people, followed by an analysis of the discourses embedded in the Practical Guide for the Caregiver, a document created by the Brazilian Ministry of Health to provide guidance to informal caregivers in the actual provision of care to elders. The analysis shows that throughout the Guide, caregivers are portrayed as multifaceted subjects; yet at the same time, three primary positionings for the caregiver and her or his work are emphasized: the almost-angel, the almost-healthcare professional, and the almost-household professional.     

Convoys of care: Theorizing intersections of formal and informal care

Although most care to frail elders is provided informally, much of this care is paired with formal care services. Yet, common approaches to conceptualizing the formal–informal intersection often are static, do not consider self-care, and typically do not account for multi-level influences. In response, we introduce the “convoy of care” model as an alternative way to conceptualize the intersection and to theorize connections between care convoy properties and caregiver and recipient outcomes. The model draws on Kahn and Antonucci's (1980) convoy model of social relations, expanding it to include both formal and informal care providers and also incorporates theoretical and conceptual threads from life course, feminist gerontology, social ecology, and symbolic interactionist perspectives. This article synthesizes theoretical and empirical knowledge and demonstrates the convoy of care model in an increasingly popular long-term care setting, assisted living. We conceptualize care convoys as dynamic, evolving, person- and family-specific, and influenced by a host of multi-level factors. Care convoys have implications for older adults' quality of care and ability to age in place, for job satisfaction and retention among formal caregivers, and for informal caregiver burden. The model moves beyond existing conceptual work to provide a comprehensive, multi-level, multi-factor framework that can be used to inform future research, including research in other care settings, and to spark further theoretical development.     

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.     

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.     

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.     

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.     

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.     

Latino caregiver psychosocial factors and health care services for children involved in the child welfare system

Children in the child welfare system have a high prevalence of health problems, making pediatric health service use critical. Latino children represent a growing proportion of the child welfare system, and are at increased risk for health problems. Many have argued that Latino caregivers can provide Latino children with the least disruptive out-of-home placement, but little is known about how caregiver factors might relate to health services utilization or child health status within this population. This study assessed relationships between caregiver psychosocial factors, health care service utilization, and health status for children in the child welfare system. This sample featured 48 Latino caregivers involved in child welfare. Logistic regression models were used to test for relationships between caregiver psychosocial factors and appointment adherence and child health status. Problem-focused coping was positively related to well-child status. No psychosocial factors were related to medical appointment adherence. Case workers may help improve child health outcomes by promoting problem-focused coping skills among Latino caregivers.     

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.     

Needs and Perceptions of LGBTQ Caregivers: The Challenges of Services and Support

Increasing attention has been paid to the lack of services and support afforded older lesbian, gay, bisexual, transgender, and queer (LGBTQ) women in same-sex relationships, including caregivers. This study was designed to investigate the needs and perceptions of LGBTQ women from ages 35 to 91, including informal caregivers and older adults regarding services and support from health care providers. Questionnaires were completed by older LGBTQ women (N = 76), and follow-up interviews were conducted with 25% of caregiver respondents. The majority of subjects indicated a fear of future challenges and discrimination. Four main themes emerged when analyzing the open-ended responses: the need for health care workers who were both supportive and knowledgeable about LGBTQ issues; better and consistent recognition of same-sex partners and their rights to make decisions as primary caregivers; increased sensitivity training regarding the needs of LGBTQ patients and caregivers; and more open and accepting environments where LGBTQ patients and caregivers could feel comfortable discussing issues with the staff.