Family Caregiver Support Program Research Articles

CAREGIVING: A FAR-REACHING PUBLIC HEALTH CONCERN

Talley and Crews provide needed attention to family caregiving as a public health issue.1 Their description of caregiving in terms of the relationship between the elder care recipient and care provider is welcoming to this clinician and researcher. The urgency of caregiving is made more pressing by the passage of the Older Americans Act Amendments of 2000, which established the National Family Caregiver Support Program.2 Broadening the focus of caregiving—to include grandparents caring for children living with them and anyone caring for older persons—has magnified the implications of caregiving to encompass a range of traditional public health concerns, from child well-being to health promotion and access to care. In 2001, the California Department of Aging released a report that summarized findings from more than 180 journal articles into a systems-based framework.3 This model shaped caregiving into a life-course perspective of a family system for the benefit of local program planning. It treated caregiving as an interactional process marked by changes in social involvement, familial support, and well-being throughout the caregiving career, in addition to the changes in the clinical course of each disabling condition or the life demands of the caregivers. The model recognized many aspects of access to care as challenges that caregivers could face. It took into account not only the physical and financial barriers but also the less-well-researched areas influencing the perception of access, such as having knowledge about available services4 or working with clinicians who might not be able to build a therapeutic alliance with certain clients.5 The last domain within this model recognized inter- and intrapersonal resources of caregivers and the influences of caregivers’ values and beliefs, such as expectations about caregiving on the basis of gender, generational values, and ethnic or cultural background. Under the National Family Caregiver Support Program, the importance of caregiving as an emerging public health issue can be seen by observing how the events of caregiving over time may touch on more-traditional aspects of public health. A holistic view is needed to examine and manage family caregiving in a society that is becoming more ethnically and culturally diverse. The challenge for public health systems is to develop a strategy for reaching out to all Americans that is sensitive to the complexities of caregiving. Policies and programs targeting caregivers need to be meaningful and relevant to the targeted populations.

Preliminary Experiences of the States in Implementing the National Family Caregiver Support Program:

Preliminary Experiences of the States in Implementing the National Family Caregiver Support Program:

Family and Aging Policy

* INTRODUCTION * Family and Aging Policy (Francis G. Caro) * INTERNATIONAL VIEW * Policies and Practices in Support of Family Caregivers--Filial Obligations Redefined in Sweden (Lennarth Johansson and Gerdt Sundstrom) * Danish Home Care Policy and the Family: Implications for the United States (Mary Stuart and Eigil Boll Hansen) * A Critical Review of Singapore's Policies Aimed at Supporting Families Caring for Older Members (Kalyani K. Mehta) * Families' Values and Attitudes Regarding Responsibility for the Frail Elderly: Implications for Aging Policy (Nancy Guberman, Jean-Pierre Lavoie, Michel Fournier, Lise Grenier, Eric Gagnon, Helene Belleau, and Aline Vezina) * THE UNITED STATES * Commentary: What Role for the Family and Medical Leave Act in Long-Term Care Policy? (Steven K. Wisensale) * Preliminary Experiences of the States in Implementing the National Family Caregiver Support Program: A 50-State Study (Lynn Friss Feinberg and Sandra L. Newman) * Families, Work, and an Aging Population: Developing a Formula That Works for the Workers (Donna L. Wagner). * Family and Friends as Respite Providers (Carol J. Whitlatch and Lynn Friss Feinberg) * The Family Caregiving Career: Implications for Community-Based Long-Term Care Practice and Policy (Joseph E. Gaugler and Pamela Teaster) * Zoning, Accessory Dwelling Units, and Family Caregiving: Issues, Trends, and Recommendations (Phoebe S. Liebig, Teresa Koenig, and Jon Pynoos) * Resident and Family Perspectives on Assisted Living (Carrie A. Levin and Rosalie A. Kane) * Welfare Reform: Challenges for Grandparents Raising Grandchildren (Casey E. Copen) * State Policy Decisions in the 1990s with Implications for the Financial Well-Being of Later-Life Families (Gretchen J. Hill) * Index * Reference Notes Included

Preliminary Experiences of the States in Implementing the National Family Caregiver Support Program

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.

Stress among Family Caregivers of Older Persons in Singapore

It is projected that, in the 21st century, the majority of the world's older people will be living in Asia. After Japan, Singapore is the most rapidly aging country in Asia. With an increasing life expectancy, many older persons will require health and instrumental care during later life stages. In Singapore, close to 95% of older people co-reside with family members, highlighting the importance of community support for family caregivers. Using a study of 61 principal family caregivers in Singapore, this article highlights the nature of and relationship between caregivers' stress and gender, patients' activities of daily living (ADL) and instrumental ADL dependency, and caregivers' attitudes. Findings from the study suggest that female caregivers tended to be more stressed than male caregivers. Results also showed a significant inverse relationship between the level of stress experienced by caregivers and the ADL and instrumental ADL dependency of patients. Caregivers looking after patients suffering from dementia, Parkinson's disease, and hypertension were more likely to be stressed than those caring for persons with stroke, depression, and other illnesses. This article concludes by describing some implications of this research for social worker practice and for informal as well as formal support programs for family caregivers.

Availability of Caregiver Support Services

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.

A Study of 10 States Since Passage of the National Family Caregiver Support Program: Policies, Perceptions, and Program Development

This study describes the preliminary experiences of 10 states in providing support services to family or informal caregivers of elderly adults and adults with disabilities; it focuses on the newly created National Family Caregiver Support Program, state general funds, Medicaid-waiver programs, and other state-funding streams. Case studies were conducted, between March and July 2002, through in-person interviews with state officials and stakeholders in Alabama, California, Florida, Hawaii, Indiana, Iowa, Maine, Pennsylvania, Texas, and Washington. States were in the start-up phase of implementing the National Family Caregiver Support Program and varied greatly in program design and integration of caregiver support into their home- and community-based care system. Viewing family caregivers as a client population was a paradigm shift for many state officials. Heavy reliance is currently placed on family and informal caregivers in home- and community-based care, without adequate support services. Family support should be an explicit goal of long-term-care system reform.

The Role of Federal Policies in Supporting Grandparents Raising Grandchildren Families

Grandparents caring for their grandchildren is among the oldest practices in child rearing with roots embedded in the traditions across many cultures. However, in recent years, the issue of “grandparents raising their grandchildren” has garnered the attention of researchers, advocates, service providers and even the popular press. Dynamic changes in family life, related social trends and child welfare policies in the United States have resulted in dramatic growth of intergenerational care giving among this population. The 2000 United States Census shows that there are 6 million children living in grandparent- and other relative-maintained households, which represents a thirty-percent increase from the last Census. This growth has created the need for effective federal policies that support and insure the well-being of these families. This paper examines some of the reasons grandparents raising grandchildren are capturing public attention, and the growing needs for effective federal policies that support this burgeoning population. We will (1) provide a brief demographic sketch of grandparent-headed families, (2) identify some of the challenges faced by these families, and (3) explore some of the most effective federal public policies, in particular the new National Family Caregiver Support Program, which are emerging from an intergenerational agenda directed at assisting these families. We conclude by noting that the issue of “grandparents raising their grandchildren” presents a unique opportunity to develop coalitions and policies that cross sometimes rigidly defined age-based policy structures.