Home-based care provision within the German welfare mix

With the introduction of long-term care insurance (LTCI) in 1995/96, Germany established a universal long-term care scheme within a cost containment framework to provide public support in defined situations of care dependency. The scheme aimed to promote ageing in place with an emphasis on public support for family care provision as a precondition. A further aim was the expansion of market-oriented professional care services to offer users a choice between family and professional care provision and care providers. The focus of this study is on the interplay of formal and informal family care provision within the institutional framework of LTCI, as well as the organisation, regulations and mix of different types of formal care services. In a first step, an examination of the interplay of formal and informal care provision shows the largely family-oriented care strategy, the burdened situation of informal carers, the mix of rationalities of service use and their interrelationship with socioeconomic inequality. In a second step, an analysis of the organisation of different types of formal services reveals paid care provision that emerges in the interplay of politicians' strategies to develop professional care services within the framework of LTCI, bottom-up strategies of users to increase the range of services outside the framework of LTCI and efforts of politicians to regulate the latter. Basic orientations of care provision underlying the development process such as user orientation, quality and comprehensiveness guided the process and are used to analyse the development. Finally, the discussion of the situation of care workers reveals a contradictory picture with increasing employment opportunities, a comparably well-qualified workforce and worsening employment conditions. Empirically, the research is based on an institutional analysis of LTCI combined with a literature review and representative statistics.     

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.     

Responsibility of families for their severely disabled elders.

In the past 13 years, total expenditures for nursing home care under the Medicaid program have increased drastically. They show no signs of abating. Government, therefore, has become aware of the need to control this rapid increase. Families, who currently provide a large amount of informal, long-term care for their disabled elderly, are seen as a potential resource to maintain people in the community. Although demographic elements appear to mitigate against increased family responsibility, governmental incentives may be able to reverse the trend. While demographic variables cannot be modified by public policies, programs can be developed to modify family situations, increasing family capacity--and willingness--to care for disabled, elderly adults.     

Towards More Effective Intervention in Natural Helping Networks

Fiscal constrains which are promoting a retreat from social welfare programming place increasing responsibility for care on natural helping networks of family and friends. Research hsa identified several characteristics of informal networks which are associated with support such as density, reciprocity, homogeneity, and multiplexity. Professional interventions have also responded to the potential supports available in networks. Professional practice concentrates primarily on self-help groups and the use of key persons in networks. There is, however, little correspondence between research findings and professional approaches to intervention. Little has been done to determine the possible impact of formal service provision on the dynamics of informal networks. More effective intervention in informal networks must consider the limitations of current practice, the development of assessment instruments, and the changes in network structures and processes over time.     

What support do caregivers of elderly want? Results from the Canadian Study of Health and Aging.

The aim of this paper is to document interest in support strategies among caregivers of elderly persons. We used data from the Canadian Study of Health and Aging caregiver questionnaire which included 43 informal caregivers of elderly persons living with dementia and 145 informal caregivers of elderly persons not living with dementia. While the study assessed interest in attending support groups (10.4%), receiving telephone support from either a professional (44.9%) or a fellow caregiver (41.0%), receiving a newsletter (40.5%), receiving volunteer support (24.2%), and interest in support via computer (14.8%), there were no significant differences between the two groups with regard to interest in any of the support services. Implications for program delivery are discussed. Planners may want to consider adding telephone support and newsletters to other supports already available for caregivers.     

Elderly care policy, formal and informal care. The Swedish case

This paper discusses the consequences of a 'greying' Sweden with respect to the present Swedish policy for the care of the elderly and the role of the family as care provider for the elderly. The present system of elderly welfare is questioned, based on demographic facts, a review of the service systems and research findings. The tentative conclusions are two-fold. Firstly, present trends point to a shift in the Swedish welfare model, from a publicly financed and run elderly care system to a mixed model based on public, private and voluntary resources. Secondly, the fact that the informal care system functions as the main provider of services for the elderly, means that the development and implementation of support programmes for the family caregivers is of crucial importance for the future. The challenge for the 1990s, then, is to improve conditions for informal carers in order to enlarge the caring capacity of the community.     

Long term care arrangements for elderly persons with disabilities: private and public roles

When private resources are defined broadly to include informal care as well as private expenditures, 73 percent of the elderly long term care population rely entirely on private resources for their care. The emphasis of current programs on institutional care directs public resources toward those with more serious disability and less family to care for them. Among those with four or five disabilities in ADLS, 35 percent of those without a spouse or children currently receive no public support, compared with nearly 80 percent of those with both a spouse and children. Thus, even if restricted to seriously disabled persons, a new program expanding public long term care financing would increase eligibility for public benefits disproportionately among those with greater informal care resources.     

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.     

The system of informal caregiving as inequality

In our setting, it is families, not the health and social services, who play the greatest role in providing continuous care to persons in need of such services. Informal health care poses two key questions with regard to the issue of equity: differences in the burdens borne by men and women, which contribute to gender inequality and, depending on their educational and socio-economic level, inequities in their ability to choose and gain access to needed resources and support services, thus contributing to social class inequalities. Distributing the burden of caregiving between men and women, and between the family and the state, constitutes a crucial debate in public health. This study analyzes the concept and characteristics of informal care, provides data on its dimensions in our setting, and analyzes the profile of caregivers, as well as the work they do and the impact it has on their lives. Finally, it presents currently existing models and support strategies for informal caregivers. It is largely women who assume the principal role of providing informal care, undertaking the most difficult and demanding tasks and dedicating the largest share of their time to them. As a result, women bear an elevated cost in their lives in terms of health, quality of life, access to employment and professional development, social relations, availability of time for themselves, and economic repercussions. Unemployed, under-educated women from the least privileged social classes constitute the largest group of informal caregivers in our country. Any policies aimed at supporting those who provide such care should keep in mind the unequal point from which they start and be evaluated in terms of their impact on gender and social class inequality.     

Creating a health-promoting group for elderly couples on a home health care program

The hospital home care social worker has a unique opportunity to develop a home-keeping, health-promoting group for frail elderly couples within his or her caseload. Through home visits, working as a filial professional, the worker enters, then strengthens the couples' pre-illness formal and informal support networks, and then goes on to create an additional informal peer support group, that meets in each other's homes. The group is capable of decreasing the chance of nursing home placement for all its members. It is proposed that home health care agencies within hospitals incorporate such groups into their regular programs.     

Creating a Health-Promoting Group for Elderly Couples on a Home Health Care Program

The hospital home care social worker has a unique opportunity to develop a home-keeping, health-promoting group for frail elderly couples within his or her caseload. Through home visits, working as a filial professional, the worker enters, then strengthens the couples' pre-illness formal and informal support networks, and then goes on to create an additional informal peer support group, that meets in each others' homes. The group is capable of decreasing the chance of nursing home placement for all its members. It is proposed that home health care agencies within hospitals incorporate such groups into their regular programs.     

Dependent seniors: families and caregivers

This article focuses on health care for dependent seniors in relation to chronic illnesses. Expectations about family support for the dependent elderly are related to the role of family caregivers, but care requires support from the public and private sectors. Governments throughout the developed countries are examining their role in the provision of social welfare programs, especially in the public health sector. To recommend home care and family assistance, the context of changing family structures, the type of care needed, and professional follow-up must be taken into account.     

Zero-inflated endogenous count in censored model: effects of informal family care on formal health care

If informal family health care is a substitute for formal health care, then there is a scope to reduce formal health care cost by promoting informal family health care. With the use of Korean data for the elderly, this paper estimates the effects of informal family health care on formal health care, where the former is measured by the number of caregivers and the latter is measured by the formal health care expenditure. This task, however, poses a number of difficulties. The first is that the number of the family caregivers is an endogenous count regressor. The second is that there are too many zeros in the count (85%). The third is that the response variable also has a nontrivial proportion of zeros (14%). This paper overcomes these problems by combining 'control function approach', 'zero-inflated' counts, and a semiparametric estimator for censored models. The resulting procedure avoids strong parametric assumptions and behaves well computationally. Our main empirical finding is that informal family health care has a large substitute effect for diabetics and that there are also weak evidences that informal family health care has substitute effects for high blood pressure and mental diseases.     

Factors influencing professional home care utilization among the elderly

Most explanatory research into the utilization of home care for the elderly has been carried out in a cross-sectional design with multiple regression as the main method of analysis. For methodological reasons we chose another design in a project called 'Professional home care and informal help for the elderly', which has been conducted in the northern part of the Netherlands. Two types of causal variables were distinguished to detect influencing factors on professional home care utilization among the elderly, other than physical limitation: person-bound variables and social network variables. A Mokken Scale analysis for Polychotomous items (MSP) was used to measure the level of physical limitation and a matching procedure to compare 'users' and 'non-users' of professional home care. With regard to person-bound variables, sex, whether or not a person was living alone and the level of the elderly person's income appeared to play a role in the utilization of home care: the user group comprised significantly more women, more elderly living alone and more persons on a low income. Contrary to the findings in other Dutch research, depression and feelings of loneliness did not seem to discriminate between the two groups. With regard to social network variables, the size and structure of the social network was more or less identical in both groups. The non-users network lives slightly closer. In general, the small differences found between the groups were to the non-users' advantage. Moreover, the non-users received more informal and private care with ADL and IADL activities.     

The redefinition of the familialist home care model in France: the complex formalization of care through cash payment

This article investigates the impact of policy measures on the organisation of home-based care for older people in France, by examining the balance between formal and informal care and the redefinition of the initial familialist model. It focuses on the specific cash for care scheme (the Allocation personnalisée d'autonomie - Personalised allowance for autonomy) which is at the core of the French home-based care policy. The author argues that in a redefined context of 'welfare mix', the French public strategy for supporting home-based care in France is articulated around two major objectives, which can appear contradictory. It aims to formalise a professional care sector, with respect to the employment policy while allowing the development of new forms of informal care, which cannot be considered to be formal employment. The data collection is two-fold. Firstly, a detailed analysis was made of different policy documents and public reports, together with a systematic review of existing studies. Secondly, statistical analysis on home-based care resources were collected, which was not easy, as home-care services for older people in France are part of a larger sector of activity, 'personal services' (services à la personne). The article exposes three main findings. First, it highlights the complexity of the formalisation process related to the introduction of the French care allowance and demonstrates that formalisation, which facilitates the recognition of care as work, does not necessarily mean professionalisation. Second, it outlines the diversity of the resources available: heterogeneous professional care, semi-formal forms of care work with the possibility to employ a relative and informal family care. Finally, the analysis outlines the importance of the regulation of cash payments on the reshaping of formal and informal care and comments on its impact on the redefinition of informal caring activities.     

新疆牧业地区失能老年人居家非正式照护质量的影响因素分析

目的 分析新疆牧业地区失能老年人居家非正式照护质量的影响因素。方法 运用家庭照护质量量表（FCCI）对335例新疆牧业地区哈萨克族失能老年人居家非正式照护者进行现场调研,采用多重线性回归法对照护质量的影响因素进行分析。 结果 居家非正式照护质量平均得分为44分;被照护老年人的失能程度、与照护者关系、被照护时间、照护者就业情况、年龄及社会支持是影响居家照护质量的主要因素,上述6个变量解释失能老年人居家照护质量总变异量的32.3%。其中,被照护老人的失能程度重（Beta = - 0.475）、配偶照护者(Beta = - 0.171)、被照护时间长(Beta = - 0.180)、照护者就业状况差(Beta = - 0.134)、照护者年龄大(Beta = - 0.116)为其危险因素,高社会支持(Beta = 0.110)为保护因素。结论 新疆政府相关部门在解决失能老年人的长期照护问题中,应优先考虑牧业地区失能程度重、照护时间长及年龄较大的照护者,减轻其照护负担,提高居家非正式照护质量。     

Should I care for my mum or for my kid? Sandwich generation and depression burden in Italy

Setting and objectiveIn Italy, over the last decades, elderly care has been mostly provided by family members, especially adult offspring, and in particular daughters. This paper investigates the relationship between informal caregiving and mental distress among Italians aged 35–59, with a focus on gender effect and parenthood responsibilities.DataThe dataset is the European Health Interview Survey (EHIS), second wave, year 2015. As far as it is known, the Italian EHIS has not been used for studies on ageing and caregiving.MethodsUsing selected subsamples, a Propensity Score Matching between caregivers and non-caregivers aged 35–59 is implemented, with the aim of measuring the difference in level of depression, if any, between the two groups.ResultsFindings show that women providing their frail relatives with informal care are less likely to suffer from mental distress compared to non-carers. However, results change radically if they have children aged less than 15 at home, and a higher probability of being depressed is detected for women overwhelmed by the double responsibility of assisting both dependent relatives and their own children. Results are not significant for men.     

Substitution between Formal and Informal Care for Persons with Severe Mental Illness and Substance Use Disorders

BACKGROUND: Persons with severe mental illness (SMI) often get extensive informal care from family members and friends as well as substantial amounts of formal treatment from paid professionals. Both sources of care are well documented, but very little is known about how one affects the other. AIMS OF THE STUDY: This analysis estimates the extent of substitution between direct care provided by family and friends and formal treatment for people with severe mental illness and substance use disorders. Separate estimates are generated for short-term and long-term effects. METHODS: Data are from a randomized clinical trial conducted at seven mental health centers in New Hampshire between 1989 and 1995. The study includes detailed data for 193 persons with dual disorders measured at study entry and every six months for three years. Hours of informal care were compared with total treatment costs within each six-month period to measure short-term effects. Average amount of informal care over three years represented long-term caregiving practices. Measures of informal care are from interviews with informal caregivers. Treatment costs are based on combined data from management information systems, Medicaid claims, hospital records, and self reports. We used mixed effects repeated measures regression to estimate longitudinal effects and a multiple imputation technique to test the sensitivity of results to missing data. RESULTS: In the short-term, persons with bipolar disorder used significantly more formal care as informal care increased (complementarity). The relationship between short-term informal and formal care was significantly weaker for persons with schizophrenia. For both diagnostic groups there was a long-term substitution effect; a 4-6% increase in informal care hours was associated with an approximate 1% decrease in formal care costs. DISCUSSION: Although they must be confirmed by further research, these findings suggest that there is a significant and strong relationship between care given by family and friends and that supplied by formal treatment providers. The analysis indicates that the short-term relationship between informal care and formal treatment tends to be complementary, but differs according to diagnosis. Long-term effects, which are possibly related to changing role perceptions, show substitution between the two forms of care. Missing data for family care hours in some time periods was a concern in this study. However, the consistency in results between the analyses that used imputed data and the model using only original data increase our confidence in the findings. Although there may be some endogeneity between formal and informal care in other treatment settings we believe the unique characteristics of the service-rich environment in which this study was conducted limit that concern here. IMPLICATIONS FOR HEALTH CARE PROVISION AND USE: The amount of care provided by informal caregivers has a significant impact on formal treatment costs. Models of care that explicitly acknowledge the interplay between the two types of care are needed to ensure efficient combinations of formal and informal care. IMPLICATIONS FOR HEALTH POLICY FORMULATION: How to best to encourage informal support, without overburdening caregivers, is a key challenge facing policy makers and providers of mental health services. The merits of various approaches to reducing caregiver burden is a subject that needs more attention from researchers. In the interim, the demands on informal caregivers may mount as efforts to reduce health care spending continue. IMPLICATIONS FOR FURTHER RESEARCH: Informal care is not often included in economic evaluations of mental health treatment. Although additional research is needed to understand better the mechanisms by which informal care and formal treatment are related, we believe our results offer a strong argument for including measures of informal care in future economic evaluations.     

Aging with dependence: family needs and responsibilities

This article highlights the phenomenon of "aging with dependence" as a challenge to be dealt with by the field of collective health and discusses responsibilities for providing health care to this population contingent, comparing the necessary and existing conditions for families to assume responsibility for such care. The analysis is based on authors and theoretical references involving studies on aging, dependence, public policies, and available community resources for health care for the elderly. The following themes are emphasized: dependence and aging, the economic issue of dependence, family care, and family needs. The article concludes that since dependence is a dynamic process, it should be approached through programs that range from health promotion strategies to the establishment of support networks for long-term care in the community. These programs should be part of a public policy that involves all sectors of society and that can provide back-up for dependent seniors, with or without family support.