The effects of federalism on policies for care of the aged in Canada and the United States

Debates about who should care for the elderly often center on the relative responsibilities of the state and family. In federal societies such as Canada and the United States, however, multiple governments are involved. This article compares and contrasts federalism in these two nations and its effects on the division of fiscal, administrative, and programmatic responsibilities for care of the aged between the national and regional (i.e., state, provincial) governments. Two major policy arenas, health care and social services, are examined, with particular attention focused on the roles played by the nongovernmental sector. Because most care of the aged is provided informally--a situation firmly rooted in the value systems and public policies of both nations--national and regional policies that assist family caregivers directly are examined. Policymakers at the regional level have been more active and often more innovative in constructing policies that are supportive of family caregiving, but in general, few programs of direct assistance exist in either nation and these largely depend on their geographic location. The article concludes with a discussion of the continued effects of federalism for future policies affecting care of the aged and suggests some approaches that can be undertaken to empower families in their caregiving roles.     

Eldercare policy between the state and family: Austria

Certain aspects of the Austrian system of social security and public welfare for the elderly, on the one hand, and family caregiving, on the other hand, are reviewed. In 1993, a new attendance allowance act for needy persons is being introduced in Austria. This reform includes cash payments on seven different levels according to the degree of need and is supposed to increase the opportunity of choice for the elderly. This assumption remains dubious; it should not be expected that a significant number of new informal caregivers can be recruited. Furthermore, empirical evidence shows that the elderly themselves clearly prefer the expansion of social services over paid family caregiving. There is a need for more research regarding the effects of interaction among the elderly, the family, and professional caregivers and for the promotion of an empowerment approach.     

Paid family caregiving: a review of progress and policies

Policymakers in the United States have begun to examine solutions that encourage increased sharing of caregiving responsibilities between government and family. Initiatives in Sweden and the United Kingdom are now in place. Support includes a care leave policy implemented at the federal level, paying salaries to family members when caregiving is a regular job, providing job training to salaried caregivers when their personal caregiving experience ends, community-based programs for caregivers, and allowances to be used for providing care to an elderly person. In the United States, 13 states pay caregivers as Medicaid providers. Policymakers have considered tax incentives and, in 1975, U.S. Senate Bill 1161 was introduced but failed as an attempt to provide cash subsidies to families caring for the elderly. A proposal has been made to expand the Temporary Disability Model to include care of family members of all ages by providing adequate wage replacement to assist caregivers. At present, 34 states provide some type of economic support for caregivers. Research is needed to determine what types of programs are most acceptable and beneficial to caregivers as well as cost effective for government.     

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.     

Caught Between Love and Money: The Experiences of Paid Family Caregivers

This paper considers the experiences of family home care providers, paid an hourly wage by California’s In Home Supportive Services program to care for disabled or elderly relatives. These caregivers are unique in that they provide care in what Arlie Hochschild calls the “third sector” of social life, where norms and responsibilities tied to work and family intersect. Drawing on in-depth interviews and ethnographic observations of family home care providers, we find that providers perceive their paid caregiving as deviant behavior that violates social norms surrounding family care, i.e. that people should not be paid for the care of kin. Family caregivers manage the norm violation associated with their carework by offering “accounts” that 1) emphasize the tasks and skill associated with caregiving and 2) by framing their carework as a public good that benefits the larger community. These accounts allow family providers to distance themselves from the norm violation of receiving a wage for care and to reconstruct their actions in a positive light.     

Private lives and public programs: an Australian longitudinal study of the elderly

Major late life events, reported in the Dubbo longitudinal study of older Australians, are used to examine the interaction of private lives with public programs. First, the data indicate strong supportive effects of publicly funded income, health, and aged care programs in reducing family burdens from major life changes. In particular, financial crises were rarely mentioned, directly or indirectly, as major threats. Next, the central role of informal social support in these events is demonstrated, first, as in previous studies, family support was responsive to risky events and to aging itself. Also, in new findings, one-third of surviving elderly respondents coped with the burdens of family crises as a substantial proportion of the "major" life changes that occurred over 13 years of the study. Within the security and support provided by the Australian welfare system, and with strong social networks, families with older persons in the Dubbo study manage multiple, major life changes. With rapid population aging, the development of more, and more easily accessible, services for a growing population of older people is a priority. The critical challenge will be to harmoniously grow public financing, private funding, and informal caregiving to deal with the growing burden arising from an aging society.     

Effects of Caregiving on Employment and Economic Costs of Chinese Family Caregivers in Canada

A telephone survey with 339 randomly selected Chinese Canadian caregivers examined the employment and economic costs of family caregiving for the elderly. Although the Chinese culture places a strong emphasis on filial obligation, caregiving is not without economic consequences. Caregiver’s age, financial adequacy, and employment, caring for an additional care receiver, and levels of assistance in Activities of Daily Living (ADL), were the predictors for economic costs perceived by family caregivers. Caregiver’s age, caring for an additional care receiver, and care receiver’s financial adequacy were significant predictors for male caregivers. Caregiver’s financial adequacy and higher levels of assistance in ADL were the predictors for female caregivers. Policies to support family caregivers should not just focus on the social aspect, but also the financial needs.     

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.     

Understanding the pattern of support for the elderly: a comparison between Israel and Sweden

Cross-cultural comparison can offer critical input to analyses of the interplay between formal and informal services for the elderly. Israel and Sweden have very different population structures and represent different points on the spectrum of welfare state development: Sweden has a much higher percentage of elderly, a less traditional family structure, and a much more developed system of public support. In addition, there are thought to be different attitudes toward family ties, with a less family-oriented value structure in Sweden. The natural question is to what extent these differences translate into differences in the extent and nature of family support for the elderly. In this article, family structure, living arrangements, disability rates, and formal and informal sources of help in Sweden and Israel are compared at various points in time. While there is a greater rate of formal service provision in Sweden and some substitution for family support seems to have occurred, informal care has nevertheless remained important. In both countries, residential patterns are critical: it is when the elderly live alone that the formal system has tended to replace the family. The rate of institutionalization is particularly important in determining the rate of disabled elderly requiring care, both formal and informal, in the community.     

Understanding the Pattern of Support for the Elderly:

Cross-cultural comparison can offer critical input to analyses of the interplay between formal and informal services for the elderly. Israel and Sweden have very different population structures and represent different points on the spectrum of welfare state development: Sweden has a much higher percentage of elderly, a less traditional family structure, and a much more developed system of public support. In addition, there are thought to be different attitudes toward family ties, with a less family-oriented value structure in Sweden. The natural question is to what extent these differences translate into differences in the extent and nature of family support for the elderly. In this article, family structure, living arrangements, disability rates, and formal and informal sources of help in Sweden and Israel are compared at various points in time. While there is a greater rate of formal service provision in Sweden and some substitution for family support seems to have occurred, informal care has nevertheless remalned important. In both countries, residential palterns are critical: it is when the elderly live alone that the formal system has tended to replace the family. The rate of institutionalization is particularly important in determining the rate of disabled elderly requiring care, both formal and informal, in the community.     

Long-term care policy and financing as a public or private matter in the United States

Effective approaches to assure adequate resources, infrastructure, and broad societal support to address chronic care needs are volatile and potentially unpopular issues that can result in many losers (those getting far less than they want) and few winners (those who gain access to scarce societal resources for care). In the United States, debates on long-term care involve a complex set of issues and services that link health, social services (welfare), and economic policies that often pit public and private sector interests and values against one another. Yet long-term care policies fill a necessary function in society to clarify roles, expectations, and functions of public, non-profit, for profit, individual, and family sectors of a society. By assessing and developing policy proposals that include all long-term care system dimensions, a society can arrive at systematic, fair, and rational decisions. Limiting decisions to system financing aspects alone is likely to result in unforeseen or unintended effects in a long-term care system that stopgap "fixes" cannot resolve. Three underlying policy challenges are presented: the need for policymakers to consider whether the public sector is the first or last source of payment for long-term care; whether government is seen primarily as a risk or cost manager; and the extent to which choice is afforded to elders and family caregivers with regard to the types, settings, and amount of long-term care desired to complement family care.     

Global Convergence: Aging and Long-Term Care Policy Challenges in the Developing World

Aging around the world poses a global challenge in eldercare. This challenge is particularly felt in low- and middle-income countries (LMICs), where population aging outpaces the development of aged care policies and services. This Perspective highlights the phenomenon of global convergence in several unsettling trends and challenges shared across LMICs. These include the weakening of informal family care systems for the elderly, growing need for formal long-term care of the frail and disabled who can no longer be adequately supported by family members, and mounting pressures for policy responses to tackle these societal challenges. It is argued that policymakers should take a proactive stance. That is, when family care for the elderly falls short and family caregivers are increasingly under strain, the government should step in and step up support to fill in the gap by developing appropriate policies and a continuum of long-term care services that are accessible and affordable for the majority of older people in need. Three general principles are then suggested with regard to long-term care provision, financing, and quality assurance, which transcend national borders and can be used to guide long-term care policymaking across LMICs.     

Correlates of caregiving burden in schizophrenia:A cross-sectional,comparative analysis from India

Schizophrenia is a global mental health issue that has serious implications not only for the person with the diagnosis, but for caregivers as well. In Asian societies, the family tends to be the “natural” caregiver in such situations and the caregiving function is usually shouldered by parents or the spouse. Asian communities tend to be more closely knit, and it would be expected that more social support would be available to those facing distressing circumstances such as managing the demands of a person with mental illness. This study seeks to explore the perceived burden in family caregivers of persons diagnosed with schizophrenia, the coping strategies that come into play, as well as the extent of social support available to them. Standardized instruments were administered to collect data at a teaching cum treatment facility in south India. A quantitative methodology was used to analyze cross-sectional data from 75 primary caregivers of people with a diagnosis of schizophrenia and a reference group of caregivers of patients with general medical ailments. Results indicate higher levels of burden, low social support, and poor coping in the caregivers of people with schizophrenia than the reference group. Implications for intervention with caregivers are also discussed in this article.     

Women and the work of caring

In the U.S., care for chronically dependent people is done mostly by family and friends, with only sporadic community support. Though such unpaid caregiving work--the bulk of it performed by women--constitutes an enormous subsidy to the national welfare, the contribution is undervalued, and the negative practical consequences for caregivers seldom recognized.     

The withdrawal of the welfare state: Elderly care in Sweden in the 1990s

In Sweden, clear changes in the care of the elderly have occurred during the 1990s, with fewer people being provided public care, although greater efforts are now directed towards those most in need of help. Elderly people are cared for increasingly in other ways: by the family, by means of market-provided care, and by voluntary and informal means. Differences between municipalities are considerable. A comparative study was conducted in eight Swedish municipalities, four of them characterized by extensive reorganization of home-help services, and the other four constituting a reference group where such changes had not occurred. The aim was to examine processes of setting local priorities and adjustments in a period of marked structural change. Interviews with local politicians, administrators, professionals, and union representatives, and with the elderly themselves, were the main sources of data. The process of determining the extent and content of home care services in the municipalities was found to be a complex process, one involving a number of partly interdependent factors. Restructuring was found to be greatest in the context of a traditionally strong reliance on home-help services, rather than in the context of institutionalized care, where administrative decision-making and a medical and rehabilitative perspective dominated.     

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.     

Family caregivers of the elderly: quality of life and coping in Estonia

The purpose of the study was to analyse the assessments of elderly people aged 65 and more about family caregiving as a factor influencing their quality of life and coping. The study is based on the project SUFACARE—‘Supporting family carers and care receivers in Estonia and in Finland’—in the framework of which the Institute of Social Work of Tallinn University carried out postal surveys in 2010. The Estonian survey was conducted in Tallinn and Lääne-Viru County. The total number of respondents was 581 (70% female and 30% male), of whom 98 (n=74 female and n=24 male) were family caregivers. Caregiving has not influenced the physical and mental health of caregivers, the reason being that many people who receive care are not of very ill health or suffer from dementia. People mostly take care of their spouses. Based on the Estonian Family Law Act (RT I 2009, 60, 395), adult descendants are required to provide maintenance if their relatives are not able to care for themselves. Caregivers whose health is below average consider caring to be physically demanding. We cannot speak of the social isolation of respondents who have care duties—they communicate actively and do not feel lonely. Women report caregiving to be physically strenuous more often than men. The mental health of male caregivers is better—fewer male respondents claimed to feel unhappy or depressed compared to female respondents.     

Private Lives and Public Programs

Abstract

Major late life events, reported in the Dubbo longitudinal study of older Australians, are used to examine the interaction of private lives with public programs. First, the data indicate strong supportive effects of publicly funded income, health, and aged care programs in reducing family burdens from major life changes. In particular, financial crises were rarely mentioned, directly or indirectly, as major threats. Next, the central role of informal social support in these events is demonstrated, first, as in previous studies, family support was responsive to risky events and to aging itself. Also, in new findings, one-third of surviving elderly respondents coped with the burdens of family crises as a substantial proportion of the “major” life changes that occurred over 13 years of the study. Within the security and support provided by the Australian welfare system, and with strong social networks, families with older persons in the Dubbo study manage multiple, major life changes. With rapid population aging, the development of more, and more easily accessible, services for a growing population of older people is a priority. The critical challenge will be to harmoniously grow public financing, private funding, and informal caregiving to deal with the growing burden arising from an aging society.     

Caring for informal caregivers: policy approaches to the provision of direct support services

Despite being the backbone of modern welfare states, the informal care sector for elderly people in need of long-term care is highly dysfunctional. The majority of informal caregivers are overburdened on account of their care-related activities, although an evolving market for support services directly aimed at relieving informal caregivers is observable. In this paper, we examine the reasons for the imperfect exchange between demand and supply in this market, applying the economic theory of market failure. Through a case study of Austria based on an empirical, qualitative survey of all direct support services and their suppliers on the national level as well as in three provinces, an understanding of this market's main players and mechanisms is derived. Thus, the authors determine that three different system types can be identified beyond the historical regional discrepancies. They illustrate the approaches to service provision for informal caregivers: centralized and public, laissez-faire and private, and a radically decentralized network for informal caregivers. Still, lack of information, social and psychological barriers, as well as high transaction costs, are identified which undermine the support service market for informal care. If the costs of the formal long-term care sector are to be contained despite demographic developments, better policy approaches will be necessary to overcome this challenge. In light of this, recommendations are derived to ensure a better exchange between supply and demand. By providing an initial empirical understanding and analysis of this market and its imperfections, the authors pioneer future quantitative research in this field.