The cyclicality of informal care

This paper measures the cyclicality of an important input into elderly health: informal care. Using independent survey measures of informal caregiving and care receipt over the past two decades, we find that informal care from adult children to their elderly parents is countercyclical. By contrast, informal care from spouses is procyclical among individuals in their sixties. We find little corresponding change in the use of formal care, highlighting the potential for unmet care needs across the business cycle. These findings suggest that informal health inputs may play an important role in the interpretation of the cyclicality of elderly mortality.     

The use of formal and informal home care by the disabled elderly.

Using data from the Channeling experiment, this article analyzes the factors associated with the amount of formal and informal home care received by the disabled elderly. The amounts of formal and informal home care used increase with disability, as well as with other measures of need for care. The use of formal care increases, and the use of informal care decreases, with income. The availability of immediate family increases reliance on informal care and reduces reliance on formal care. The findings have implications for the design of proposed programs to expand publicly financed home care for the disabled elderly.     

Informal and formal care for elderly persons: how adult children's characteristics affect the use of formal care in Japan

Informal care by adult children remains the most common source of caregiving for elderly parents in Japan, even after the introduction of long-term care insurance in 2000. We estimate how the potential supply of child caregivers affects the use of formal care of elderly parents, focusing on the differences across children. We find that the effects of children's presence vary substantially with gender, marital status, and opportunity costs of children. The potential supply of daughters-in-law, as the traditional source of informal care, is less important in providing care than that of unmarried children. The opportunity costs of children make a difference in the use of formal long-term care.     

Continuity of the self in later life: perceptions of informal caregivers

The authors explore perceptions of informal caregivers of extremely elderly (80+) relatives or friends regarding the purpose of caregiving, including factors they considered important for the life satisfaction of the care recipients. They collected data mainly through qualitative interviewed and employed symbolic interactionism. The results revealed a general purpose of the informal caregiving: protection of the care recipient's self. This purpose was a significant aspect of the identified caregiving categories--social-emotional, proxy, and instrumental care--and the authors consider all four factors important for the care recipients' life satisfaction: activity, independence, and environmental and adaptive factors. Some informal caregivers gave forceful encouragement to care recipients in an attempt to get them to accept formal care and move to sheltered accommodation. This study underscores the value of informal caregiving and that the caregiving interaction should be balanced by reciprocity.     

Social security income and the utilization of home care: Evidence from the social security notch

This paper exploits Social Security law changes to identify the effect of Social Security income on the use of formal and informal home care by the elderly. Results from an instrumental variables estimation strategy show that as retirement income increases, elderly individuals increase their use of formal home care and become less likely to rely on informal home care provided to them by their children. This negative effect on informal home care is most likely driven by male children withdrawing from their caregiving roles. The empirical results also suggest that higher Social Security benefits would encourage the use of formal home care by those who would not have otherwise used any type of home care and would also encourage the use of both types of home care services among elderly individuals.     

The evaluation of the National Long Term Care Demonstration. 1. An overview of the channeling demonstration and its evaluation.

The channeling demonstration sought to substitute community care for nursing home care to reduce long-term care costs and improve the quality of life of elderly clients and the family members and friends who care for them. Two interventions were tested, each in five sites; both had comprehensive case management at their core. One model added a small amount of additional funding for direct community services to fill the gaps in the existing system; the other substantially expanded coverage of community services regardless of categorical eligibility under existing programs. The demonstration was evaluated using a randomized experimental design to test the effects of channeling on use of community care, nursing homes, hospitals, and informal caregiving, and on measures of the quality of life of clients and their informal caregivers. Data were obtained from interviews with clients and informal caregivers; service use and cost records came from Medicare, Medicaid, channeling, and providers; and death records for an 18-month follow-up period were examined.     

Does informal care from children to their elderly parents substitute for formal care in Europe?

This paper analyzes the impact of informal care by adult children on the use of long-term care among the elderly in Europe and the effect of the level of the parent's disability on this relationship. We focus on two types of formal home care that are the most likely to interact with informal care: paid domestic help and nursing care. Using recent European data emerging from the Survey on Health, Ageing and Retirement in Europe (SHARE), we build a two-part utilization model analyzing both the decision to use each type of formal care or not and the amount of formal care received by the elderly. Instrumental variables estimations are used to control for the potential endogeneity existing between formal and informal care. We find endogeneity of informal care in the decision to receive paid domestic help. Estimation results indicate that informal care substitutes for this type of formal home care. However, we find that this substitution effect tends to disappear as the level of disability of the elderly person increases. Finally, informal care is a weak complement to nursing care, independently of the level of disability. These results highlight the heterogeneous effects of informal care on formal care use and suggest that informal care is an effective substitute for long-term care as long as the needs of the elderly are low and require unskilled type of care. Any policy encouraging informal care to decrease long-term care expenditures should take it into account to assess its effectiveness.     

Formal care of the elderly and health outcomes among adult daughters

Health-care expenditures and the demand for caregiving are increasing concerns for policy makers. Although informal care to a certain extent may substitute for costly formal care, providing informal care may come at a cost to caregivers in terms of their own health. However, evidence of causal effects of care responsibilities on health is limited, especially for long-term outcomes. In this paper, we estimate short and long-term effects of a formal care expansion for the elderly on the health of their middle-aged daughters. We exploit a reform in the federal funding of formal care for Norwegian municipalities that caused a greater expansion of home care provision in municipalities that initially had lower coverage rates. We find that expanding formal care reduced sickness absence in the short run, primarily due to reduced absences related to musculoskeletal and psychological disorders. The reduction in sickness absence is concentrated among workers with little work flexibility (e.g., shift workers), whereas there are no effects for workers with more flexible jobs. We were unable to detect effects on long-term health and healthcare utilization outcomes. Our results imply that sickness absence uptake could be hiding a need for more flexibility around work for people with caregiving responsibilities.     

The economic value of informal caregiving

This study explores the current market value of the care provided by unpaid family members and friends to ill and disabled adults. Using large, national data sets we estimate that the national economic value of informal caregiving was $196 billion in 1997. This figure dwarfs national spending for formal home health care ($32 billion) and nursing home care ($83 billion). Estimates for five states also are presented. This study broadens the issue of informal caregiving from the micro level, where individual caregivers attempt to cope with the stresses and responsibilities of caregiving, to the macro level of the health care system, which must find more effective ways to support family caregivers.     

Public financial support receipt and non-medical resource utilization in Alzheimer's disease results from the PLASA study

A major health policy objective is to encourage and sustain informal caregiving networks for people with Alzheimer's disease (AD). This goal can be reached by providing financial assistance to patients facing difficulties in the accomplishment of activities of daily living, in order to encourage utilization of professional service and therefore alleviate informal caregiver burden. The main issue is to understand if and how financial assistance is correlated with the distribution between informal and professional care. We used a cross-sectional sample of 1131 French elderly patients (≥65) with mild to moderate AD. Informal and professional service resource use was measured in hours per month using a validated instrument, the Resource Use in Dementia questionnaire. Our results confirmed the utter dominance of informal care, which represented more than 80% of total care even among patients receiving public financial support. However financial support receipt was associated with differences in care utilization: higher use of total non-medical care (formal and informal) and lower proportion of informal care in total non-medical care. Our results suggested the presence of a threshold effect that would influence non-medical care demand decisions. Even if on average the use of informal care in total was 13.3% lower among patients receiving public financial support, informal care use represented more than 80% of total non-medical care use. Providing robust evidence of these associations is crucial to further identify the right dosage between professional service demand and informal care utilization that could be associated with a lower burden and therefore a lower probability of institutionalization.     

Does Formal Employment Reduce Informal Caregiving?

Using the Survey of Income and Program Participation, we examine the impact of formal employment on informal caregiving. We instrument for individual work hours with state unemployment rates. We find that, among women of prime caregiving ages (40–64 years), working 10% more hours per week reduces the probability of providing informal care by about 2 percentage points. The effects are stronger for more time‐intensive caregiving and if care recipients are household members. Our results imply that work‐promoting policies have the unintended consequence of reducing informal caregiving in an aging society. Copyright © 2015 John Wiley & Sons, Ltd.     

Home care for older couples: "it feels like a security blanket . . ."

In this article, the authors explore the home care experience as described by older physically impaired individuals and their caregiving spouses. Separate face-to-face semistructured interviews were carried out with each spouse from nine couples. Analysis of the interview data revealed four themes. For care receivers the themes were Independence and Developing a Trusting Relationship With Home Care Workers. Relief and Continuity were voiced by the caregiving spouses. The authors show how these themes relate to the participants' sense of security, which emerged as a key underlying concept in the home care experience. This study adds to the home care and caregiving literature as it expands our understanding of the relationship between formal and informal caregiving, highlights issues and concerns older couples face as they receive home-based care, and includes both older spouse caregivers and their direct-care recipients.     

Determinants of the use of ambulant social care by the elderly

Policy makers and scientists are increasingly concerned with the use of formal care services by the elderly. This article demonstrates that there are three different care systems: the informal, the commercial and the formal (public) system. In terms of prevalence, the formal system is the least important one. By means of a cross-sectional sample of the elderly population of Antwerp, an Andersen model is estimated to explain the use of formal services. This model shows that the level of functional capacity of the elderly is a crucial factor. Yet, the effect this has on the use of care varies according to the different living arrangements. “Need” as such, therefore, does not determine the use of formal services, since its effect is modified by the different alternatives that are at the disposal of the elderly person (living arrangements, informal care, income, availability of commercial alternatives). In the conclusion it is argued that the Andersen model, in a cross-sectional design, is inadequate to construct a theory concerning the use of care services.     

The unmet needs of family caregivers for frail and disabled adults

This study examines the efforts and needs associated with family care for disabled and frail adults. A survey of 117 primary caregivers focused on: the health problems associated with caregiving; the existence of informal, family support systems; the use of formal social services, and the need for additional social service programs. Most caregivers report physical and emotional problems due to caregiving ranging from hypertension and back problems to depression and mental exhaustion. The characteristics of caregivers at high risk for health problems are identified. Less than half of the caregivers have family or friends to assist them with caregiving. At least one type of social service was being used by over 80% of caregivers, with utilization patterns in male and female caregivers. Based on the study findings, several policy implications are reviewed.     

Formal and informal care for community‐dwelling frail elderly people over time: A comparison of integrated and usual care in the Netherlands

While integration has become a central tenet of community‐based care for frail elderly people, little is known about its impact on formal and informal care and their dynamics over time. The aim of this study was therefore to examine how an integrated care intervention for community‐dwelling frail elderly people affects the amount and type of formal and informal care over 12 months as compared to usual care. A quasi‐experimental design with a control group was used. Data regarding formal and informal care were collected from frail elderly patients (n = 207) and informal caregivers (n = 74) with pre/post‐questionnaires. Within‐ and between‐group comparisons and multiple linear regression analyses were performed. The results showed marginal changes over time in the amount of formal and informal care in both integrated care and usual care. However, different associations between changes in formal and informal care were found in integrated and usual care. Most notably, informal caregivers provided more instrumental assistance over time if formal caregivers provided less personal care (and vice versa) in integrated care but not in usual care. These results suggest that integrated care does not necessarily change the contribution of formal or informal care, but changes the interaction between formal (personal care) and informal (instrumental) activities. Implications and recommendations for research and practice are discussed. Trial registration: Current Controlled Trials ISRNT05748494.     

Helping hospitalized elderly: discharge planning and informal support.

The extent to which informal support systems substitute or provide linkages to formal support systems has been a source of controversy in many studies. Even the extent to which the formal system of discharge planing in acute care hospitals links patients to formal care systems afterwards in unclear and suggests that existing models are ideal and theoretical rather than established empirically. The Posthospital Support Study examined hospital-based discharge planing and services received in the two month period after hospitalization for 170 patients with either heart conditions, or hip problems which required operations. Discharge planners were found to provide for services which were third-party reimbursable. Although planners adhered verbally to a wholistic model of assessing patient need and used an interdisciplinary planning structure, in actual planning they adhered to a narrow medical model while assuming an underlying social model of services from informal supports. The main informal caregivers varied in the extend to which formal as well as other informal providers supplemented their care, with caregiving spouses carrying most of the burden alone. Patients were most likely to assess themselves as either needing services they were already receiving, or those which they or their caregivers had to arrange for themselves.     

Proximity to death and participation in the long-term care market

The extent to which increasing longevity increases per capita demand for long-term care depends on the degree to which utilization is concentrated at the end of life. We estimate the marginal effect of proximity to death, measured by being within 2 years of death, on the probabilities of nursing home and formal home care use, and we determine whether this effect differs by availability of informal care--i.e. marital status and co-residence with an adult child. The analysis uses a sample of elderly aged 70+ from the 1993-2002 Health and Retirement Study. Simultaneous probit models address the joint decisions to use long-term care and co-reside with an adult child. Overall, proximity to death significantly increases the probability of nursing home use by 50.0% and of formal home care use by 12.4%. Availability of informal support significantly reduces the effect of proximity to death. Among married elderly, proximity to death has no effect on institutionalization. In conclusion, proximity to death is one of the main drivers of long-term care use, but changes in sources of informal support, such as an increase in the proportion of married elderly, may lessen its importance in shaping the demand for long-term care.     

The role of social networks in using home care by older people across Continental Europe

The diversification of caregiving arrangements in European societies has drawn attention to the factors that condition the use of care by older people. Social and family relations appear as a key factor, mainly to be related to the availability and accessibility to potential informal caregivers. Recent studies evidenced that geographical proximity and a larger social network increase the probability of receiving informal support in old age. However, the ways in which interpersonal relationships are associated with the use of formal care, as well as the cross‐country variability of this association, have been barely explored. Using a sample of 37,708 individuals aged 65 and over from Wave 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE), this study examines to what extent the characteristics of older people's social networks predict the use of three types of home care; formal, informal, or combined, exploring the cross‐European convergences and divergences. Binomial logistic regressions are conducted to compare four macro‐regions in continental Europe (northern countries: Denmark and Sweden; western countries: Austria, Belgium, France, Germany, Switzerland, and Luxembourg; southern countries: Italy, Spain, Greece, and Portugal; and eastern countries: Poland, Czech Republic, Slovenia, Estonia, and Croatia). The structure, availability, and accessibility to the members of the social network are the major predictors of the receipt of informal care everywhere. Regional divergences are observed regarding to formal care, alone or combined with informal caregivers.     

Informal caregivers' experiences of formal support in a changing context

As the location of long-term care of elderly people moves to homes and communities, and responsibility for care shifts to families, understanding the experience of people in this situation is necessary to ensure that support is appropriate, accessible and effective. The present paper explores informal caregivers' and recipients' relationships with formal support, drawing on thematic and narrative analysis of 30 in-depth interviews with self-identified family caregivers conducted over a year in a mid-size city in Ontario, Canada. All but six of these caregivers had had some interaction with formal support. The semistructured interviews explored caregivers' knowledge about, and perceptions and experiences of accessing and using formal support. Interpretation reveals how confusion and lack of knowledge about services, the inflexibility and lack of availability of services, and increasing pressure on the quantity and quality of publicly funded community-based resources combine to impact negatively on the experience of accessing and using formal support. Different ideas about the relative roles and responsibilities of seniors, informal caregivers and 'family' in general, and the state both shape and are shaped by policies and the situated realities of the provision of formal support. Providing care at home creates both opportunities and constraints for caregivers in their interactions with formal support. Lastly, this paper highlights the difficulties of interacting with publicly funded formal support as the costs of care are moved away from the state and onto families and individuals.