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Services for supporting family carers of elderly people in europe : characteristics, coverage and usage (EUROFAMCARE)


Using the data collected on 1,000 care situations in each of the six involved countries, multivariate data analyses have been carried out to evaluate the situation of family carers of older people in relation to the existence, availability, use and acceptability of supporting services. The results emerging at a national level have been transposed into six NAtional SUrvey REports (NASUREs), while those comparing cross-national differences and commonalities have come together in the Trans- EUropean Report (TEUSURE). The analysis have been based on three main types of variables measured and put in relation to each other: a) Dependent variables related to the situation of the caregiver in terms of burden of care suffered from as well as the satisfaction from caregiving; b) Independent variables concerned with all types of support the caregiver may or may not receive; c) Context variables measuring the situation (socio-demographics of caregiver and cared-for person, relation of caregiver and cared for person, grade of frailty, informal support network available etc.) that influence the effectiveness of each support measure in reducing the care burden. The analysis of the qualitative data deriving from the semi-structured interviews with 250 service providers in the six involved countries (text-memos, interview-transcriptions) has instead used the method of qualitative content analysis, in order to structure and cluster the openly described experience, attitudes and opinions of service providers The main chapters of the both NASUREs and TEUSURE follow a common structure, which can be summarised as follow. After an introduction on the project’s main purposes, Chapter 2 provides an overview on the state of the art of the literature on support services for family carers of older people in Europe, focussing on the partnership approach and including the national literature existing in the 6 countries. Chapter 3 describes the EUROFAMCARE Common Assessment Tool (CAT) in detail, clarifying the development of items and instruments, questionnaire pilots, item transformation and the psychometric characteristics of scales used. Chapter 4 deals with the sampling and recruitment procedures followed in the different countries and discusses the problem of representativeness. In chapter 5 an overview of the main characteristics of the national samples is presented, showing both the profile of the cared-for older people and of the family carers in terms of socio-demographics, employment status, financial situation, caring situation, health and quality of life. Chapter 6 develops a typology of caregiving situations in Europe, using a cluster analysis approach, thus providing a first answer to one of the core questions of the project, concerning the relation between care situations, motivations for care and willingness to continue caring. In chapter 7 the analyses focus on family carers experience in the use of services and take up of allowances, including costs, preferences and satisfaction aspects. This chapter gives unprecedented insight into questions such as service availability, carers experiences in using them, barriers that prevent carers from using support services and ability of services to reach those most in need of support. The aim of chapter 8 is to add the providers’ perspectives to the family carer’s views, by describing the care providers’ experience. The study results focus on coverage, usage, access and costs from the provider’s perspective, describing the importance of quality characteristics and types of service as well as expected future developments. In Chapter 9 the one-year Follow-up study provides an important longitudinal dimension to the research, which allows taking into account the dynamic nature of care and the need to understand the use and value of services over time. Chapter 10 summarises the main findings and the implications of these findings for family carers, service providers and policy makers. This synthesis aims at helping politicians and decision-makers in different European countries to understand the critical importance of supporting family carers in the coming decades, improving their situation and increasing available support measures, thus maintaining family carers’ high motivation and ensuring that they remain a valuable resource in the growing work of caring. The in-depth knowledge from the six chosen countries, covering different welfare and socio-economic systems, offers the potential to other countries of using the findings as a guide to: best target support; identify which family carers are most in need of support; point out what types of support and services are mostly lacking; clarify how to create more user-oriented services.
The 23 NAtional BAckground REports (NABAREs) and the Pan-European Background Report (PEUBARE) focus on family carers of older people and their situation in Europe, considering how services do and do not help those who provide a vast amount of care and support at a family and informal level. The NABAREs in particular deliver an often-unprecedented overview for each of the 23 countries involved in the project, thus acting as a relevant stimulus to those involved in issues related to care. The PEUBARE, on turn, has re-assessed the country specific findings and suggestions in a cross-national context, thus providing to family carers, policy makers and service providers updated knowledge and new ideas about how best to move forward in supporting both family carers and older dependent people, a topic which at the EU level has being increasingly recognised as a significant issue, related as it is to the three keystones of accessibility, quality and sustainability of health care systems, to social inclusion and to employment. The structure of the reports takes into account the fact that, in all EU countries, the responsibility for the provision of and payment for long-term care is divided between four sectors: family and informal care sector; state or public sector; voluntary and non-governmental-organisation (NGO) sector; care market or private sector. The balance of care provision in each country depends on a mixture of factors such as tradition, legal responsibilities, health and social policy, national budgets and national wealth and, last but not least, demographic trends regarding fertility levels and life expectancy, which affect the availability of informal family carers. There are substantive differences between countries in Europe as to how care is provided. Those with poorly funded welfare states and a continuing association between poverty and old age are associated with low service provision limited to those who can pay or who lack alternative sources of care, whereas in those countries with very high taxation demand for services as a taxpayer’s right is high. However, since demand is potentially infinite, even countries which provide services as a citizen’s right inevitably have to introduce a system of rationing, usually based on needs assessment (objective assessment of need for a service) and means testing (income and assets assessment of the older people and/or family carers) to ascertain the older person’s ability to make a financial contribution to payment for care. The former Communist regimes with their previous welfare infrastructures are gradually being reconstructed with a plurality of partners from state, local authority, NGOs and private sectors. Despite wide variations in systems of formal care provision for dependent older people, in all the 23 EUROFAMCARE countries the vast majority of care is provided informally by individual family members. Even in countries such as Sweden, where the state has traditionally been a main provider of care, the need to contain increasing costs, in combination with the stated preferences of older people themselves to remain in their home environment for as long as possible, has led to what has been described as a re-discovery of family care. The NABARES make available systematic and comparable data on the national situations of family carers, based on a Standardized Evaluation Protocol, to facilitate the cross-national analysis used for the production of the PEUBARE. The lack of data on family carers in many countries and the wide variation on how available data are recorded does however not always allow comparing findings between countries. Despite these difficulties, several key aspects relating to the family care of dependent older people recurred in most reports and allow to draw some enlightening conclusions on the present state of family care across Europe, with a view to making recommendations for future policy for the support of family carers at both national and EU levels. There are strong indications that family carers will continue to provide the bulk of care in the foreseeable future, so one of the main themes of the report are the different methods of supporting family in choosing what aspects of care to provide, enabling them to care without damage to their own well-being and to avoid long term poverty. The short and long term outcomes and impact of the different types of support for the well-being of older people and family carers, as well as for national and EU economies, are also referred to, and 8 matrices have been developed as a way of analysing the large amount of national data, on following topics: legal position of family carers and recognition by the state; labour force, informal and formal; home-based services for older people; services for the support of family carers; residential care; current policy debates; recommendations and future research needs; other issues.
The aim of the Socio-Economic Evaluation report is to summarise the EUROFAMCARE project’s main findings with regard to following four issues: - The direct and indirect costs of care for older family members; - The costs of support measures for family carers; - The cost-effectiveness of support measures with respect to the caregivers’ situation (cost-effectiveness analysis); - The efficiency of support measures with respect to overall costs of care, i.e. to execute cost- benefit analyses of support measures on care arrangements and their respective costs. To this purpose, the socio-economic evaluation has been based on a causal model underlain by three main relations: Relation 1: “services for supporting family carers of older people reduce the caregivers burden” (A => B); Relation 2: “A reduced caregivers burden changes utilisation patterns and reduces institutionalisation into nursing homes” (B => C); Relation 3: “Less institutionalisation reduces overall expenses” (C => D). The analysis of the available socio-politico-economic data of the project’s National Background Reports (NABAREs) have been used for a European synopsis showing cross-European differentials in socio-economic and politico-economic impact of dependency. Combined data from the NABAREs and the National Survey Reports (NASUREs) referring to public and private expenditure on elder care are analysed, taking into account, on the private side, both expenses for professional services and the value of real transfers. The time spent on care has been also evaluated in terms of a shadow wage and reduction in work participation (objective a). At the same time, a European synopsis showing cross-European differentials in expenses for services for supporting family carers has been prepared (objective b). The cost-effectiveness analysis has followed the causal explanation model mentioned above, based on the scales used within the carers’ Common Assessment Tool (CAT) to measure the caregivers’ situation and trace back the influence of the support received. Using the NABAREs and NASUREs data, these effects have been put into relation to the costs of the respective measures (objective c). Cost-effectiveness analyses included the following steps. Expenditures for support measures have been calculated and, by means of techniques of multivariate data analysis, used to estimate the effect of certain measures on the care burden. By putting the information on costs and effects together, the effectiveness of each measure is calculated as the improvement in the caregivers’ situation (on the specific scales of Common Assessment Tool) per Euro. In order to execute cost-benefit analyses, the value of the improvements in the caregivers situation have been estimated. Savings resulted mainly from differences in utilisation of professional care. The data generated by the follow up survey included a limited number of questions concerning - The type of care provided after 12 months (particularly home and nursing home care); - Retrospective data on critical life events happened during the observation window; - Retrospective data about changes in type of care (particularly home and nursing home care) and utilisation of services (after NASUR). Using information on the costs of different types of care, the savings for long-term care financing institutions resulting from services for supporting family carers have been calculated and related to their respective costs. The results pointed out by this report allow a better understanding of how far and to what extent utilised measures are effective and efficient. Furthermore, the results on efficiency enable policy-makers not only to choose those measures which provide the greatest support for family caregivers, but also those which reach their targets in the most economical way. Therefore, the proposed socio-economic evaluation has the potential to stimulate wide ranging reviews of policy and service provision related to family carers.
The Common Assessment Tool is a family carer assessment package validated into six languages (English, German, Greek, Swedish, Italian, Polish), by means of a back translation and cross-cultural face-to-face validation. The tool incorporates information on both negative and positive aspects of caregiving as perceived by the carer, physical and mental health status of the cared for older person, contents and intensity of care provided, utilisation and costs of care services as well as preference towards them. The package includes further a Users’ Manual, an Interviewer Training Manual and a Coding Guide. It was developed over a period of several months, and comprises items and scales that were developed by the partners specifically for this project, or selected for use from among a range of standardised and validated published instruments. Development was achieved through a series of meetings involving representatives of all partners, database searching for published instruments and evidence of validity/reliability, and extensive discussion via email. Once items/instruments had been selected, their availability in partner languages was determined. Where equivalent versions were not available in all languages, back translation was performed following established protocols. Formatting of the CAT took place, and the draft questionnaire was tested in two pilot studies carried out in each partner country. Following the first pilot study, substantial revision to the CAT occurred. The second pilot study indicated the need for further minor revision. The final instrument therefore represents a third version of the original. Items and instruments were developed by the partners or selected from the research literature with reference to a model of carer service use and quality of life as a guiding framework, derived from the work of Aneshensel and colleagues (Aneshensel et al., 1995). The model conceptualises the relationship between constructs that are hypothesised to impact on carer and elder service use and carer quality of life. Following further development, the constructs were operationalised in the CAT via a series of variable categories: Elder’s demographic and background characteristics; Elder’s disability and need; Carer’s demographic and background characteristics; Carer’s caregiving situation; Carer quality of life (QoL); Financial circumstances; Service use; Characteristics and quality of services. In addition, some variables in the CAT addressed issues related to the administration of the questionnaire. The CAT also included a project consent form. Finally, each EUROFAMCARE partner was allowed to include a small number of country-specific items in their own version of the CAT. With regard to the follow-up questionnaire (CAT-FUQ), it drew substantially on the CAT instrument used in the first wave, in order that comparison between the two waves of data would be most optimally affected. Its development involved initially the selection of items and scales from the CAT considered essential in order to understand the change in circumstances among our carer sample between the first and second wave of data collection. In this respect, the same variable categories as obtained for the CAT also applied for the CAT-FUQ: Elder’s demographic and background characteristics; Elder’s disability and need; Carer’s demographic and background characteristics; Carer’s caregiving situation; Carer quality of life (QoL); Financial circumstances; Service use; Characteristics and quality of services. To maximise comparability, items and scales selected from the CAT for inclusion in the CAT-FUQ were altered only if a) problems had been found in their original administration, and/or b) it was necessitated as a result of a change in mode of administration between the two waves. Some new items were also included on the basis of issues emerging from the first wave of data. Each EUROFAMCARE partner was furthermore allowed to include a small number of country-specific items in their own version of the CAT-FUQ. Following the development of the CAT-FUQ, the draft questionnaire was finally tested in a pilot study carried out in each partner country.
This report focuses on the analysis of the impact of current EU policies on family carers of older people, identifying opportunities and barriers for a potential improvement of existing measures. AGE has gathered available documentation on the EU decision-makers perspective in relation to the existence, familiarity, availability, use and acceptability of services for family carers. To this purpose, existing data has been reviewed, starting from the experience of policies in specific public areas such as social protection systems, labour market and employment, active ageing, economic migration and social inclusion. All these sectors interact with each other and might have an indirect impact on the situation of family carers in unpredictable ways. On of the most neglected tools to support family carers of older people in Europe may well be the lack of cooperation between different sectors, assessments on the possible (positive as well as negative) effects of certain policy decisions, and public participation. Planning in the area of family care would run short if policy makers would fail to look for ways of influencing the direction of change of unpredictable social processes. In the review, the key lessons on how to manage change within the policy environment have been extracted from selected areas in order to understand where concrete obstacles prevent policy makers to implement research evidence. AGE enjoys close contacts with key EU policy makers., and this direct access can be used for the dissemination of the project results, as it allows for first hand information on how they would be able to be implemented and where would be the difficulties. The policy dimension has to be closely linked to one of organisational development, as the implementation of identified recommendations, action plans or guidelines depend on the readiness of organisations (including the administration in Member States) to take them up. Key organisational issues related to the implementation of the recommendations have also been identified. Among the suggestions formulated in this report, the following might well be considered as the most relevant: - With the possible adoption of the OMC in the field of healthcare and care for the elderly, the Commission and Member States should dedicate a larger attention to the situation of family carers, by drafting at least a guideline pressing Member States to tackle the issue of family carers, and asking them to develop and exchange good practices on measures supporting informal carers. - The Commission should continue integrating carers of older dependent people in its policies, and recognise the important role they play in society. The Commission should press Member States to develop measures geared to answer their needs and improve their situation. - Family carers cannot be expected to compensate the lack of resources needed to care for an increasing number of older dependant. Caring for our elderly is a collective responsibility and sound policies must be proposed to come up with this challenge. - To reconcile the Lisbon objective of full employment and the challenge of an ageing society, informal care involving more than 4 hours a day should be acknowledged as a form of employment and duly compensated for in terms of wages, pension rights and social protection for the informal carer. Promoting more flexible working arrangements and compensating carers for time spent providing care to a dependent person should help increase the employment rate of women and of older workers and help the EU member States respond adequately to the challenge of a rapidly ageing society.