Family Carers' Experiences Using Support Services in Europe ...

The Gerontologist Vol. 48, No. 6, 752–771

Copyright 2008 by The Gerontological Society of America

Family Carers’ Experiences Using Support Services in Europe: Empirical Evidence From the EUROFAMCARE Study Giovanni Lamura, PhD,1 Eva Mnich, MA,2 Mike Nolan, PhD,3 Beata Wojszel, PhD,4 Barbro Krevers, PhD,5 Liz Mestheneos, MA,6 and Hanneli Do¨hner, PhD,2 on behalf of the EUROFAMCARE Group Purpose: This article explores the experiences of family carers of older people in using support services in six European countries: Germany, Greece, Italy, Poland, Sweden, and the UK. Design and Methods: Following a common protocol, data were collected from national samples of approximately 1,000 family carers per country and clustered into comparable subgroups to facilitate cross-national analysis. Results: Carers’ use of available support services is limited across Europe but is considerably higher in Germany, Sweden, and the UK than in Poland, Greece, and Italy. Service use is more prevalent among wives and carers with stronger support networks and less frequent among working daughters The EUROFAMCARE research project, on whose findings this article is based, was funded by the European Union under the 5th Framework Programme for Research, Technological Development and Demonstration, Key Action 6: The Ageing Population and Disabilities, 6.5: Health and Social Care Services to older People (Contract QLK6CT-2002-02647; project’s homepage at www.uke.uni-hamburg.de/ extern/eurofamcare/). This article was prepared on behalf of the EUROFAMCARE Group: Germany: Do¨hner, H. (coordinator), Kofahl, C., Lu¨decke, D., Mnich, E., Kohler, S. (Hamburg) and Rothgang, H., Becker, R., Timm, A. (Bremen); Greece: Mestheneos, E., Triantafillou, J., Prouskas, C., Kontouka, S., Goltsi, V., Loukissis, A., Mestheneou, K.; Italy: Lamura, G., Balducci, C., Gianelli, M. V., Melchiorre, M. G., Polverini, F., Principi, A., Quattrini, S., Spazzafumo, L.; Poland: Bien, B., Wojszel, B., Synak, B., Czekanowski, P., Bledowski, P., Pedich, W., Sielawa, B., Rybaczuk, M.; Sweden: O¨berg, B., Krevers, B., Johansson, S. L., Davidson, T.; UK: McKee, K., Nolan, M., Barber, L., Brown, J.; AGE-Platform (Brussels): Parent, A.-S., Patel, J., Daure´le, C. We would like to thank the two unknown reviewers and the editor for their valuable comments and suggestions to improve the article’s contents and readability. Address correspondence to Dr. Giovanni Lamura, Department of Medical Sociology, Working Group of Social Gerontology, University Medical Centre Hamburg–Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany. E-mail: [email protected] 1 Department of Gerontological Research, INRCA, Ancona, Italy. 2 Department of Medical Sociology, Working Group of Social Gerontology, University Medical Centre Hamburg–Eppendorf, Germany. 3 University of Sheffield, Northern General Hospital, United Kingdom. 4 Department of Geriatrics, The Medical University of Bialystok, Poland. 5 Department of Medical and Health Sciences, Linko¨ping University, Sweden. 6 Sextant Group/50þ Hellas, Athens, Greece.

752

with high levels of burden, suggesting the need for a reconsideration of eligibility criteria and better targeting of service responses. Access to and use of services is characterized by a divide between carers in northwestern Europe, who experience few difficulties other than the older person’s refusal to accept the support offered, and carers in southeastern Europe, where service affordability and poor transportation present remarkable barriers. Concerns regarding the timeliness and quality of support are common to all countries. Implications: European Union-wide efforts to improve carer support need to focus on improving the care system’s ability to provide timely, high-quality care delivered by staff who treat the older person with dignity and respect, and to enhance cooperation between health professionals (in all countries), informal networks (especially in southeastern Europe), social services (particularly in Sweden and the UK), and voluntary organizations (in Germany and the UK). Key Words: Family carers, Support services, European comparison, Service use and access

This article aims at providing updated empirical evidence of the experiences, difficulties, and preferences reported by family carers of older people in the use of support services across Europe, based on the findings emerged from the EUROFAMCARE study, a European Union (EU) funded research project carried out in six countries reflecting different traditions of Welfare State. Supporting Family Carers of Older People in Europe: Issues and Challenges Despite improved health status, the number of frail older people in Europe is expected to rise in the The Gerontologist

Table 1. Main Characteristics of Care Regimes in EUROFAMCARE Countries Characteristic

Greece

Italy

Role of family in the care of older people Female employment rate Public expenditure on elder care Role of private copayments for care Care recipients by type of care Home Residential Cash-for-care

þþþ þ þ þþþ

þþþ þ þ/þþ þþ

þ þ þ

þ þ þþþ

UK

Sweden

Poland

Germany

þ þ þ þ

þ þ þ þ

þþ þþþ þþþ þ

þþþ þ þ þþ

þþþ þþ þþ þ

þþ þþ þþ

þþþ þþþ þ

þ þ þ

þþ þþ þþþ

Note: þ = rather low; þþ = medium; þþþ = rather high. Source is our own elaborations on data from Alber and Ko¨hler (2004), Anttonen and Sipila (1996), Kautto (2002), Lamura et al. (2007), Munday (2003), and Rostgaard (2002).

coming decades, as is the demand for long-term care (Commission of the European Communities [hereafter ‘‘Commission’’], 2005). Simultaneously, family members’ ability to provide informal care is decreasing due to demographic factors (EUROSTAT, 2007) and socioeconomic changes, such as a decline in coresidency between generations (Tomassini, Glaser, Wolf, Broese van Grenou, & Grundy, 2004) and the EU’s policy imperative to increase employment rates among women and older workers (Mourre, 2005), the two groups traditionally providing the bulk of informal care (Alber & Ko¨hler, 2004). With the desire to reduce carer burden—frequently a predictor of early institutionalization and elder abuse (Fulmer et al., 2005), but also of decreased primary care service use (Arksey & Hirst, 2005)— national governments in Europe have instituted reforms that shift the focus of welfare systems from acute to long-term care, with the common policy objective of aging in place (Organisation for Economic Co-Operation and Development, 2005). Recognizing the strategic role family carers play in achieving this aim, some countries have introduced enhanced carer support (Kro¨ger, 2003), whereas EU authorities have started implementing programs to acquire comparable data on the prevalence and impact of such measures in order to properly underpin future EU-wide strategies to address common demographic challenges (Commission, 2005). As a consequence, whereas research on support for family carers at a European level was virtually absent until the mid 1990s (Jani-le-Bris, 1993; Salvage, 1995), recently it has become the focus of several multicountry European studies (CARMEN, OASIS, PROCARE, SOCCARE, CARMA) that all underline, albeit from different angles, the need for a stronger partnership between family and professional carers through more integrated and user-centered services (Banks, 2004; Kro¨ger, 2003; Leichsenring, 2004; Lowenstein & Ogg, 2003). Despite renewed insights into European family carers’ circumstances deriving from these studies, in-depth understanding of the extent to which their needs are met remains elusive, leaving several unresolved issues as to how best support these carers Vol. 48, No. 6, 2008

753

(Audit Commission, 2004; Pearlin, Harrington, Powell-Lawton, Montgomery, & Zarit, 2001). Research has identified several factors affecting carer service use (Arksey & Hirst, 2005; Lowenstein & Ogg, 2003; Nolan & Mestheneos, 2006; Zarit & Leitsch, 2001), among which—besides local availability and specific care recipients’ and carers’ characteristics—are lack of information, concerns about service organization and affordability, and perceived low quality of care by staff. In the eyes of many observers, even the most developed family support policies in Europe seem to have failed so far to use this knowledge to fully recognize carers as ‘‘partners’’ or ‘‘co-experts’’ within the existing formal care system (Banks, 2004; Nolan & Mestheneos, 2006), thus limiting the appropriateness and acceptability of existing carer support services (Brereton & Nolan, 2003; Scottish Executive, 2005) and eventually undermining the overall effectiveness of longterm-care interventions, due to the lack of an effective, reciprocal cooperation between informal and formal caregiving systems (Alber & Ko¨hler, 2004; Daatland & Herlofson, 2003).

The EUROFAMCARE Study With the aim of providing comparative evidence on the availability, use, and acceptability of family care support throughout Europe—a necessary, preliminary step for the possible development of harmonized directives and initiatives at EU level— in 2004 the EUROFAMCARE project was funded by the EU to collect detailed information on the situation of carer support in six countries: Germany, Greece, Italy, Poland, Sweden, and the UK (EUROFAMCARE Consortium, 2006). Due to existing cross-national differences in terms of family care roles, female employment, public/private mix of care expenditures, and residential/home/monetary share of care provision, these countries represent heterogeneous European care regimes (Alber & Ko¨hler, 2004; Anttonen & Sipila, 1996; Kautto, 2002; Rostgaard, 2002), schematically identified as follows (see Table 1): the Scandinavian model (represented

754

EL IT EL, IT

Notes: DE = Germany; EL = Greece; IT = Italy; PL = Poland; UK = United Kingdom; SE = Sweden. Adapted from Mestheneos and Triantafillou (2005; Annexes 5 and 8). a These services often address not only the carer’s support needs but also the older person’s care needs.

PL DE, IT, SE, UK DE, IT, PL, UK EL

SE

SE EL, PL

DE, IT, UK DE, IT

DE, IT, PL, SE, UK IT SE, UK DE, IT, PL EL

DE, SE

PL

PL

EL, IT, PL IT EL, PL, SE

DE, UK DE, PL, UK DE IT, PL DE, EL, IT, PL, UK DE, IT, PL, UK UK

EL, DE, IT, PL, SE, UK DE, IT, PL, UK DE, IT, PL, UK IT DE, UK DE, UK EL, IT, UK EL, DE, IT, SE, UK DE, UK, IT, PL, SE DE, IT, PL, SE, UK DE, IT, SE, UK DE, UK DE, IT, SE, UK DE, IT, PL, SE, UK SE, UK SE, UK SE SE EL, IT, PL EL

Day care centersa Information and counseling Self-help or support groups Respite care services ‘‘Granny-sitting’’ Weekend breaks Training in caring, protecting own physical/mental health, etc. Formal, standardized assessment of the carer’s needs Monetary transfers (care allowances, etc.)a Integrated planning of carea

DE DE, IT, PL DE, EL, IT, PL, UK DE, IT, PL, UK DE, PL, SE, UK, EL DE, PL, SE, UK EL, IT, PL, UK

Private Without Public Funding With Public Funding Public

Type of Provider

Voluntary

High Medium Low or None Type of Service/Support

Against this background, this article provides, for the first time, comparable empirical evidence of the experiences, difficulties, and preferences reported by family carers in Europe in the use of support services, by posing the following research questions: (a) To what extent do family carers of older people use support services or receive financial allowances across Europe? What kind of supports and allowances do they mainly use? (b) What are the main difficulties carers experience accessing the services used? What prevents carers from accessing unused supports that they need? What causes them to stop using still-needed services? (c) In order to improve support provision, what can be understood about the service characteristics considered crucial by carers, and how far are these needs met? and (d) Which channels or actors can provide the greatest help in underpinning future policy efforts to improve access to services/supports?

Availability/Diffusion

Research Questions

Table 2. Support Services for Family Carers Available in the EUROFAMCARE Countries

by Sweden), characterized by high public investments in home/residential care and a residual family role, in connection with high female employment rates; the liberal, means-tested model (UK), focusing public provision of care to the economically more dependent population, thus implying a broader role for private care providers for remaining users; the subsidiarity model (Germany), allocating primary responsibility to families, backed up, however, by a long-term-care insurance scheme funding care services provided by religious and nongovernmental organizations; the family-based model (Greece and Italy), with limited public responsibilities and formal service provision, a central role being played by kinship networks, in connection with low female employment; and the transition model of postsocialist societies (Poland), resembling in many aspects that of family-based countries, however with much more severe financial constraints following recent economic restructuring and care decentralization/pluralization processes (Munday, 2003). This categorization of prevailing care regimes occurred without taking into account the provision of support services for family carers, until recently excluded by the debate on European welfare state models, but which appears to be confirmed by the findings from the EUROFAMCARE policy substudy on the availability and typologies of carer support across Europe (Mestheneos & Triantafillou, 2005). These findings indicate a very low availability in Greece and, to a lesser extent, in Italy and Poland (mainly through voluntary and nonstatutory, but also private providers), a medium diffusion in Germany and the UK (by means of a plurality of public, private, and nonprofit actors), and a widespread (mainly public and mandatory) availability in Sweden (see Table 2).

The Gerontologist

Table 3. Sample by Recruitment Channel and Country (% Values, by Country)

Recruitment Channel Door to door Health or social care organizations Personal contacts Lists of residents Voluntary organizations Religious organizations Advertisement Other channels Total

Greece (N ¼ 1,012)

Italy (N ¼ 988)

UK (N ¼ 995)

Sweden (N ¼ 918)

Poland (N ¼ 1,000)

Germany (N ¼ 1,003)

All (N ¼ 5,916)

28.5 34.9 28.9 0.8 1.5 4.2 0.2 1.1 100.0

7.3 30.8 21.1 0.0 9.9 21.4 0.0 9.6 100.0

45.4 3.2 7.2 3.9 18.8 1.1 5.8 14.5 100.0

0.3 15.6 19.5 52.3 4.7 0.3 6.4 0.9 100.0

43.7 33.1 5.0 6.6 2.7 6.7 1.5 0.7 100.0

19.4 16.0 38.4 1.3 5.1 6.0 11.8 2.0 100.0

24.5 22.4 20.0 10.3 7.1 6.7 4.3 4.8 100.0

Methods A standard evaluation protocol was agreed upon by the EUROFAMCARE partnership to ensure comparable national samples reflecting the carers’ universe (6,000 family carers, 1,000 per country) by providing common guidelines on sample unit (i.e., definition of family carer of older people), sampling and recruitment strategies, and standardized training of interviewers in administering face-to-face questionnaires (O¨berg et al., 2006). Definition of Carer The elementary sample unit was defined as ‘‘any person who perceived him/herself as a carer, providing unpaid support at least four hours per week to a person over 65 years old, at home or even in a residential care setting.’’ This definition, which did not exclude a priori non-kin caregivers (e.g., friends or neighbors), included anybody providing unpaid assistance to respond to an older person’s needs in terms of health and personal care, transportation, emotional and psychological support, domestic care, or financial support and management. This included participants organizing the care provided by others but excluded those providing only financial support or companionship. If a carer provided support to more than one person, data collection focused on the most demanding situation in terms of hours of care provided. When more than one carer provided support to the same person, data were collected from the one providing most care. Sampling and Recruitment In most European countries, no representative lists of family carers are available, thus the aim of ensuring a sample reflecting the variety of existing caregiving situations was pursued by means of a nonrandom sampling strategy based on a combination of judgmental and informed expert advice (Lonner & Berry, 1986). The following criteria were used to sample carers in each country: Vol. 48, No. 6, 2008

755

1. Subdivision of the national territory of each country into at least three large sample macroareas and identification of the dependent 65þ population living there; 2. For each macro-area, subdivision of the dependent older population according to rural, urban, and metropolitan place of residence; 3. For each rural, urban, and metropolitan area, choice of one or more representative sample zones on the basis of socioeconomic context (e.g., income level) and low/high availability of services, with an estimation, for each selected sample zone, of the number of caregivers to be recruited on the basis of parameters derived from previous studies or in relation to the size of the dependent older population (for details, see O¨berg et al., 2006).

In each of these selected sample zones, family carers were identified and recruited through a saturation method (i.e., by means of the recruitment channels judged by national research teams as potentially most ‘‘successful’’ to ensure that the recruited samples would represent the existing variety of caregiving situations) by taking into account local sociocultural specificities. This is reflected by the large cross-national variation in the recruitment methods chosen (see Table 3). Main Sample Characteristics The recruited sample featured a high prevalence of female caregivers, mainly children in their early 50s supporting their, in most cases severely dependent, parents (see Table 4). Partial exceptions to this pattern were Swedish carers (almost half of whom were spouses) and British carers (more frequently friends and neighbors). In the whole sample, the most frequent kind of help provided by carers was ‘‘emotional and psychological support,’’ followed by ‘‘domestic care’’ and ‘‘transportation,’’ with ‘‘financial support’’ representing by far the least frequently provided form of assistance. The accomplishment of the different caregiving tasks required on average about 46 hr per week, with higher

Table 4. Main Sample Characteristics (% Values, by Country)

Characteristic

Greece Italy UK Sweden Poland Germany All (N ¼ 1,014) (N ¼ 990) (N ¼ 995) (N ¼ 921) (N ¼ 1,000) (N ¼ 1,003) (N ¼ 5,923)

Care recipients Age (years), M Gender: % female ADL dependency: M Barthel scorea IADL dependency: % more dependentb

79.5 64.5 70.0 62.8

82.0 71.2 63.0 74.7

78.0 69.5 73.9 59.9

81.3 57.7 70.1 71.4

78.6 72.8 79.3 56.8

79.7 68.5 61.6 71.7

79.8 67.5 69.7 66.1

Family caregivers Age (years), M % Female

51.7 80.9

53.4 77.1

54.5 75.4

65.4 72.0

51.0 76.0

53.8 76.1

54.8 76.3

Relationship to cared for Child Spouse/partner Other

55.4 17.1 27.5

60.9 10.9 28.2

31.6 22.8 45.6

40.5 48.1 11.4

51.1 18.2 30.7

53.4 18.4 28.2

48.9 22.2 28.9

Type of care provided Emotional and psychological support Domestic care Mobility and transportation Financial management Organizing and managing care/support Health care Physical and personal care Financial support

86.3 74.3 66.7 72.0 64.3 82.1 60.7 46.0

93.8 73.5 88.5 85.0 91.1 73.7 67.1 32.7

82.8 73.6 67.1 56.0 57.9 52.6 46.1 21.5

80.0 80.4 66.7 77.4 80.5 55.5 51.7 11.7

85.0 89.0 72.0 70.9 68.1 68.2 44.3 30.9

84.7 81.7 81.3 67.0 64.3 65.4 64.3 27.4

85.5 78.7 73.8 71.3 70.9 66.4 55.8 28.7

50.85 (52.6)

49.7 (53.4)

50.6 (62.3)

37.6 (49.5)

44.7 (49.2)

39.4 (49.3)

45.6 (53.1)

Amount of care provided (hr/week), M (SD)

Notes: ADL = activity of daily living; IADL = instrumental ADL. a Index of physical disability scoring from 0 (total dependency) to 100 (independence; Mahoney & Barthel, 1965). b Percentage of participants belonging to the group showing higher dependency in terms of a 6-item IADL scale derived from the Duke Older Americans Resources and Services assessment (Fillenbaum & Smyer, 1981) and dichotomized into two groups (lower vs higher dependency).

amounts in Greece, Italy, and the UK and lower in Sweden and Germany. These cross-national variations might reflect, to an unknown extent, differences in the recruitment procedure as well as in how family care is perceived in individual countries, despite the shared definition of carer underpinning the study. Although the characteristics of the achieved samples are to a large extent comparable to data collected by previous national studies—where available—in terms of urban–rural distribution; carer’s gender, age, and relationship to the care recipient; as well as care recipient’s gender and age (O¨berg et al., 2006), in strictly statistical terms these still remain nonrepresentative samples. In order to control for recruitment bias and allow for a more accurate cross-national comparison of findings, we carried out a cluster analysis to identify comparable subgroups (or profiles) of caregivers in the six countries (see ‘‘Data Analysis’’).

available in all languages, back-translation was performed following established protocols. The questionnaire was tested in two cross-national pilot studies, and the final version, including a consent form approved by the respective ethics committees, was administered by trained interviewers. Carers were asked to exhaustively list, among other items, all of the services and allowances they had received in the previous 6 months, choosing from comprehensive national lists. Additionally, they were asked to identify up to three of the greatest helps and difficulties experienced in accessing services (their open answers being recoded by means of content analysis). Respondents were also asked to state if there were any services they or the care recipient needed but had stopped using or had not used so far, and, if yes, to specify the three most important reasons why. Finally, all respondents were prompted to rate up to the three most important service characteristics (from a list of 12) and to indicate whether these needs were currently met.

Measures The questionnaire used in the EUROFAMCARE survey contained items and scales selected from a range of validated instruments (McKee, Balducci, et al., 2006). Where equivalent versions were not 756

Data Analysis Comparative Classification of Support.—To allow for cross-national comparison, we reclassified The Gerontologist

the services and care allowances identified through country-specific lists into the following categories: information (services delivering practical information about the care recipient’s disease and available supports or benefits, including help-lines or dedicated Web sites); counseling (services providing more in-depth advice on how to cope with the caregiving situation); self-help or support groups (services providing opportunities to share experiences and reciprocal support between informal carers); respite care (including any form of in-home supervision of care recipients to relieve their carers); training (services providing educational content on how to improve care provision or ‘‘keep-fit’’ programs for carers); and assessment of the caregiving situation (defined as any formal assessment of the carer’s needs or eligibility for available support measures). A further category, day care services, was added to the above—although country-specific lists classified it as mainly a service to older people—due to the parallel relief effect it potentially provides to carers (Zarit & Leitsch, 2001). In case a service addressed different needs at the same time—service content being differently defined cross-nationally—it was classified into the subcategory referring to the most directly targeted need. As for care allowances, they were subdivided according to the main beneficiary, distinguishing those for the older person from those received by the carer. Clustering of Comparable Carer Profiles.—In order to overcome the possible bias deriving from the differentiated criteria used to recruit national samples as well as the lack of statistical representativeness, we carried out a cluster analysis to identify cross-nationally comparable caregiver profiles (Mnich et al., 2006) based on a model conceptualizing the relationship between constructs that are hypothesized to impact on carer support use and quality of life (see Figure 1). Following a dimension (factor) analysis performed to drop correlated variables reflecting overlapping constructs, we identified a set of 16 variables representing potentially confounding factors for carer support use (see Table 5). Those related to carer were quality of life (well-being, perceived ‘‘negative impact’’ due to caregiving role), demographics (gender, age, place of residence, cohabitation), resources (educational level, employment status, strength of support network), and duration of caregiving situation. Those related to care recipient were demographics (gender and age) and care needs (activity of daily living/instrumental activity of daily living impairment, behavioral problems, need of financial support). (The cluster analysis originally performed by Mnich and colleagues, 2006, included 15 variables and was integrated to control also for care recipient’s activity of daily living impairment.) Vol. 48, No. 6, 2008

757

Figure 1. Model used as a guide for the development of the EUROFAMCARE survey tool.

After dichotomization of both metric and nominal variables into binary variables, a cluster fusion (Ward) procedure was carried out, identifying an optimal number of seven homogenous clusters. The relatively low value of correctly classified cases (78%) resulting from a subsequent discriminant analysis was improved to more than 90% by means of a non-hierarchical (quick) cluster analysis. The profiles of caregivers identified through this analysis (described in detail in Tables 6 and 7) are as follows: 1. Highly burdened, cohabiting, non-employed daughters(-in-law) of highly impaired recipients (hereafter ‘‘cohabiting/non-working daughters’’); 2. Highly burdened, non-cohabiting, employed daughters(-in-law) of slightly/moderately impaired recipients (hereafter ‘‘non-cohabiting/ working daughters’’); 3. Burdened wives; 4. Moderately burdened husbands; 5. Medium/low burdened relatives of highly impaired recipients (hereafter ‘‘supported relatives’’); 6. Low burdened children(-in-law) of moderately impaired recipients; and 7. Low burdened relatives of slightly impaired recipients.

This analysis concentrates on Clusters 1, 2, 3, and 5 (i.e., on those carers potentially representing the main targets of support services due to the moderate or higher levels of burden reported). Cluster 4 (i.e., husbands) has been excluded due to the high similarity with Cluster 3. The role of gender differences between spouse carers in terms of service use and preferences represents a topic that, although relevant (Zodikoff, 2007), cannot be properly analyzed within the limited focus of this article. Finally, it is worth underlining again that the clustering of carer profiles proposed here is mainly for use as a statistical tool for attempting to manage

Table 5. Dimensions and Dichotomization Criteria Used to Perform a Cluster Analysis of Caregiver Profiles Dimension (Variable) Caregiver Negative impact of caregiving Quality of life Gender Generation Place of residence Cohabitation status Educational level Employment status Strength of support network Duration of caregiving situation Care recipient ADL dependency IADL dependency Behavioral problems Financial support Gender Age

Dichotomization Criteria 0 1 0 1 0 1 0 1 0 1 0 1 0 1 0 1 0 1 0 1

¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼

lower impact: Negative Impact Scale score of 7–10 higher impact: Negative Impact Scale score of 11–28 worse quality of life: WHO-5 Well-Being Index score 14 better quality of life: WHO-5 Well-Being Index score .15 male female not the same generation as care recipient same generation as care recipient rural urban living in different house living in same house of care recipient higher level lower level not employed employed carer could find someone to step in to help quite easily in case of own illness carer could find no help or only with difficulty, in case of illness up to 2 years more than 2 years

0 1 0 1 0 1 0 1 0 1 0 1

¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼ ¼

lower ADL dependency: Barthel Index score .75 higher ADL dependency: Barthel Index score 75 lower IADL dependency: 6-item IADL scale score 4 higher IADL dependency: 6-item IADL scale score .4 no behavioral disorders: score of a 3-item, 0-to-9-point scale derived from BISID ,1 behavioral disorders: score of a 3-item, 0-to-9-point scale derived from BISID 1 no need need male female 65–79 80 or older

Note: WHO = World Health Organization; ADL = activity of daily living; IADL = instrumental ADL; BISID = Behavioural and Instrumental Stressors in Dementia.

cross-national sampling differences, and not for analyzing the (only marginally reported and discussed) interindividual variations. Statistical Significance.—Statistical significance of differences between countries and clusters was assessed by means of chi-square and Kruskal–Wallis tests, as appropriate. All analyses were performed by using SPSS, Version 13.0. Results Carers’ Perception of Service Use On average, just 1 out of 8 of the surveyed family carers report having used at least one support service (see Table 8). This average hides the differences between two main groups of countries: (a) Germany, the UK, and Sweden (or countries in NWE [northwestern Europe]), showing the most extensive support, with more than 20% of carers using 758

services; and (b) Poland, Italy, and Greece (or countries in SEE [southeastern Europe]), reporting percentages of usage less than 5%. In almost all countries, caring wives (Cluster 3) are the most frequent service users: In Sweden they are alone in this position, whereas in the UK and Germany they share it with the group of cohabiting/non-working daughters (Cluster 1). Non-cohabiting/working daughters (Cluster 2) report cross-nationally the lowest frequency of service usage, especially in countries characterized by a more extensive service network (Germany, Sweden, and the UK), from which they seem to benefit only partially. Day care services represent a widespread reality only in Sweden and the UK, but even there not for non-cohabiting/working daughters. In Germany, with a similar observable pattern though a much lower level of utilization, carers—especially wives— report a much more extensive uptake of information and advice services on how to access available support and benefits. Although this represents The Gerontologist

Table 6. Characteristics of Clustered Caregiver Profiles (% Values, by Cluster) Cluster Characteristic

1 2 3 4 5 6 7 All (n ¼ 998) (n ¼ 606) (n ¼ 789) (n ¼ 399) (n ¼ 814) (n ¼ 684) (n ¼ 896) (n ¼ 5,186)

Dimensions used to perform cluster analysis Caregiver, % Reporting higher ‘‘negative 94.5 impact’’ due to care Reporting higher quality of life 13.0 Female gender 88.1 Belonging to same generation 2.9 Living in urban areas 64.3 Cohabiting with care recipient 62.5 With lower educational level 29.3 In paid work 30.2 Who could find help only with 73.9 difficulty, if ill Caring for more than 2 years 70.1 Care recipient, % Reporting higher ADL impairment Reporting higher IADL impairment Reporting behavioral problems Needing financial support Female gender Aged 80 and older Other core characteristics Caregiver age, M (SD) Caregiver relation to care recipient Daughter Wife Son Daughter-in-law Husband Niece Granddaughter Other relative Non-kin (friend, neighbor, volunteer)

81.4

72.2

56.6

44.2

9.8

10.4

53.1

15.5 87.8 2.6 75.6 17.8 9.2 69.0 58.3

35.1 99.4 96.7 67.9 92.1 48.5 6.1 73.5

53.1 4.3 90.7 74.7 92.0 36.8 4.0 72.7

81.7 73.7 4.4 81.0 15.0 11.2 67.7 36.5

72.5 81.9 3.5 41.7 48.2 23.5 31.3 20.9

83.1 66.9 11.3 78.6 20.5 12.9 67.4 26.3

50.5 76.6 25.7 69.1 47.5 24.0 41.5 50.8

68.6

71.4

73.4

51.4

85.1

39.8

64.2

88.9 97.9 76.9 60.1 83.5 78.2

10.2 37.0 43.1 25.9 79.0 56.6

54.4 79.7 59.6 35.2 1.8 30.3

53.9 70.4 44.1 47.6 96.7 23.8

72.4 97.7 85.9 37.3 73.1 62.4

19.4 68.9 15.9 19.0 81.1 80.1

6.3 4.1 18.5 18.4 74.1 24.4

45.7 65.8 51.1 35.2 68.0 52.7

53.9 (10.4)

48.7 (10.4)

69.1 (9.0)

72.0 (12.1)

49.1 (11.8)

51.4 (13.0)

45.4 (12.4)

54.4 (14.4)

63.7 0.5 9.2 15.4 0.0 2.6 1.2 5.0 1.9

59.6 0.2 8.4 13.0 0.0 3.1 4.5 7.1 3.5

2.3 90.6 0.3 0.4 0.0 0.0 0.1 4.4 1.8

0.0 0.3 6.8 0.3 84.2 0.0 0.0 6.8 1.5

42.3 0.2 17.7 10.9 0.1 5.5 4.7 11.9 5.0

47.1 0.9 14.3 15.2 0.0 5.4 5.6 5.7 4.7

33.9 2.3 20.2 8.9 0.6 4.4 4.6 14.3 9.2

38.3 14.5 11.5 9.8 6.6 3.2 3.0 8.1 4.1

65.5

70.3

93.1

87.9

72.7

70.1

66.6

73.9

Marital status: married Type of care provided Emotional and psychological support Domestic care Mobility and transportation Financial management Organizing and managing care/support Health care Physical and personal care Financial support

92.8

87.6

84.4

84.7

87.6

80.7

79.6

85.6

86.7 88.8 89.6 85.5

72.9 66.4 63.0 68.8

90.1 72.3 78.4 77.3

85.4 79.1 83.0 76.2

72.1 77.5 76.7 75.8

82.3 73.9 70.3 70.9

65.7 61.0 42.0 44.7

79.0 74.4 71.5 71.1

85.4 84.3 52.5

56.4 36.7 21.5

78.3 71.4 27.9

71.4 60.2 41.1

69.1 64.0 24.8

62.4 42.1 16.2

39.4 22.8 13.3

66.3 55.5 28.4

Amount of care provided (hr/week), M (SD)

68.8 (57.6)

21.9 (27.3)

83.1 (61.4)

75.0 (60.7)

22.9 (29.7)

30.6 (40.1)

16.0 (22.2)

44.6 (52.2)

Note: Bolding indicates values exceeding average by more than 15%; underlined italics indicates values below average by more than 15%. ADL = activity of daily living; IADL = instrumental ADL.

a choice, especially for supported relatives in the UK, the low apparent uptake in Sweden might partly result from the systematic inclusion of information in other types of health and social services. The less surprising, very low reported use of such services by Vol. 48, No. 6, 2008

759

Greek, Italian, and Polish carers was confirmed also for all remaining categories of support, whereas self-help groups represent a remarkable backup for British and especially German wives, with Swedish ones profiting more frequently from counseling

Table 7. Caregiver Profile Clusters by Country (% Values, by Country)

Cluster 1. Highly burdened, cohabiting, non-employed daughters(-in-law)a 2. Highly burdened, non-cohabiting, employed daughters(-in-law) of moderately impaired recipientsa 3. Burdened wivesa 4. Moderately burdened husbands 5. Medium/low burdened relatives of highly impaired recipientsa 6. Low burdened children(-in-law) of moderately impaired recipients 7. Low burdened relatives of slightly impaired recipients Total

Greece (N ¼ 837)

Italy (N ¼ 938)

UK (N ¼ 814)

29.3

30.2

12.5

18.9 13.9 4.8

11.6 9.5 5.1

8.5

Sweden (N ¼ 763)

Poland (N ¼ 968)

Germany (N ¼ 866)

All (N ¼ 5,186)

5.6

13.5

22.4

19.2

12.9 13.5 9.8

11.4 30.1 16.4

8.1 12.6 6.2

8.0 14.1 5.3

11.7 15.2 7.7

17.3

16.8

15.7

11.1

25.1

15.7

9.1

11.8

12.2

11.5

26.0

6.7

13.2

15.7 100.0

14.5 100.0

22.2 100.0

9.2 100.0

22.5 100.0

18.5 100.0

17.3 100.0

Notes: The clusters can be described as follows: (1) middle-aged carers reporting the highest level of care-related burden and lowest level of quality of life, over proportionally cohabiting with the care recipient and with a very weak support network, low education and employment rate, almost 80% of whom are represented by daughters and daughters-in-law, caring for a highly (also behaviorally and financially) dependent, very old mother, to whom they provide all types of care for almost 70 hr/week; (2) same as Cluster 1, but a bit younger, seldom cohabiting, highest educational level, very often employed, with a weak support network, providing 22 hr/week of mainly emotional and domestic care to a much less dependent, still very old mother; (3) older carers reporting high burden and low quality of life, lower educational level, mainly retired, with a very weak support network, providing a high amount (83 hr/week) of all kinds of care to a medium-to-highly dependent partner; (4) similar to Cluster 3, but reporting lower burden/higher quality of life, providing more often financial support and less personal care; (5) mixed and younger group of carers (daughters, sons, in-laws, grandchildren, siblings) providing a low amount of care (23 hr/week) to a highly dependent parent/relative but experiencing high well-being (despite a relatively negative impact of care) in connection with a stronger support network, better education and high employment rate; (6) reporting high well-being, mainly middle aged, living in rural areas, not employed, providing 30 hr of care for a long time to very old parents(-in-law) with mainly instrumental activity of daily living impairment only and the strongest support network; (7) same as Cluster 6, but younger, mainly employed, providing even less care (16 hr/week) and for less time to only slightly impaired, non-cohabiting recipients. a Cluster included in cross-national comparison.

services. The same cluster of carers reports a still noticeable uptake of mainly home-based respite care solutions, but only in Sweden, whereas programs providing training opportunities for caregivers, or a systematic assessment of the caregiving situation, remain overall a still almost ‘‘imperceptible’’ reality.

less considerable in Poland. (One Euro currently corresponds to about $1.28 U.S.) A look at differences across clusters shows that in NWE, noncohabiting/working daughters report much lower average levels of allowance than other categories of carers, especially wives (in Germany and Sweden) and supported relatives (in the UK), with no remarkable differences in SEE.

Care Allowances Public care allowances are received by only a marginal number of carers, mainly concentrated in the UK and Poland, with British carers receiving a much more substantial amount (see Table 9). Much more frequent is the provision of care payments to older people—also potentially benefiting carers, although indirectly—which are almost absent in Greece and Sweden, whereas they reach almost half of the Polish, more than one third of the German and British, and about one fourth of the Italian care recipients. The sum allocated is, however, highest in Germany (where almost one sixth of respondents receive more than 6,000 Euros/ year, with an overall average of about 750 Euros/ month), followed by the UK and Italy (where more than 22%–23% of elders benefit from more than 3,600 Euros/year, with an overall average of about 450 and 225 Euros/month, respectively), and is much 760

Factors Limiting Accessibility of Support Services As to factors inhibiting carers’ access to services (see Table 10), a high number of family carers report no difficulties in NWE, probably reflecting the higher levels of service availability and user-friendliness in these countries compared to in SEE. This perception is true in particular for wives in NWE and for supported relatives in SEE. The complexity of bureaucratic procedures is a barrier, especially for Mediterranean and German carers (but not so much for wives), whereas service affordability is particularly bemoaned in Greece and in Poland (affecting above all cohabiting/non-working daughters), two countries sharing the further jeopardy of limited transportation across almost all clusters. Insufficient information hampers service access more frequently in Italy, Poland, and the UK (in the latter country representing The Gerontologist

Table 8. Carers Reporting Use of Support Services, by Type of Support and Country (% Values, by Country and Cluster)

Type of Service Used Total percentage of carers using at least one service Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb Day care services (total sample) Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb Information Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb Self-help or support groups Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb Counseling Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb Respite care (in-home supervision) Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb Training Cluster Cluster Cluster Cluster pb

Greece Italy UK Sweden Poland Germany All (N ¼ 1,014) (N ¼ 990) (N ¼ 995) (N ¼ 921) (N ¼ 1,000) (N ¼ 1,003) (N ¼ 5,923) pa 1.4

—c

3.5 3.5 4.6 9.0 4.3 .204

22.5 32.4 16.2 33.6 31.4 .015*

20.5 16.3 9.2 33.0 15.0 ***

4.2 8.4 7.7 5.7 6.5 .856

0.7

2.0

9.0 15.7 5.7 11.8 14.0 .138

10.1 11.6 3.4 17.4 15.0 .012*

0.3

—c 0.1

—c 0.1

—c 0.2

—c 0.3

—c 0.0

1 2 3 5

Assessment of carer’s needs/eligibility to support pb

—c 0.1

—c 0.9

—c 0.7

5.8 8.8 3.8 2.7 13.1 .007**

0.1

4.7 7.8 6.7 11.8 2.2 .028*

5.2

3.1

—c

—c

0.1

2.3

—c

—c

0.5

1.7

—c

—c

—c 2.6

—c 0.2

—c

6.7 2.3 4.6 11.7 5.0 .027*

0.8

6.1 4.7 2.3 9.6 3.3 .036*

0.9

2.8

0.4

—c

—c

22.8 26.3 13.0 28.5 20.7 ***

12.4 11.7 7.9 22.4 14.7 ***

***

4.3 4.2 2.5 8.9 4.8 ***

***

16.1 18.0 11.6 22.1 17.1 .324

4.2 4.9 2.8 4.6 7.2 .002**

***

5.9 5.7 1.4 14.8 4.6 .001**

2.8 2.1 1.1 7.0 1.8 ***

***

2.3 1.8 1.5 5.2 2.0 ***

***

1.7 1.6 0.5 4.3 1.1 ***

***

1.2 0.7 0.8 2.2 1.8 .023*

***

0.4 —c

—c

4.2 6.7 0.0 9.0 3.2 .018*

2.4

—c 1.0

—c 2.1

—c

—c

—c

—c

—c

—c

0.0 —c

0.1 —c

2.0 —c

0.4 —c

0.0 —c

0.0 —c

Notes: *p , .05; **p , .01; ***p , .001, for differences between acountries and bclusters (within a country). c Not computable due to low frequencies.

an obstacle especially for supported relatives), whereas in SEE it is the length of waiting lists that bothers large numbers of carers, especially Italian noncohabiting/working daughters and Polish and Greek wives. Other inhibiting factors fall under the general heading of poor service quality and limited flexibility in service delivery, especially in Greece. Vol. 48, No. 6, 2008

761

Reasons for Not Using Needed Services The above findings are partly reinforced by the reasons European carers indicate for not using needed services, as reported by more than a quarter (see Table 11). Lack of information is the most frequent explanation, especially in SEE but not

Table 9. Care Allowances Received by Family Carers and Care Recipients (% Values of Carers/Care Recipients Receiving Allowances, by Country and Cluster) Beneficiary and Amount of Allowance Family carer Less than E 1,200/year E 1,201–3,600/year More than E 3,600/year Care recipient Less than E 1,200/year E 1,201–3,600/year E 3,601–6,000/year More than E 3,600/year Monthly amount received by care recipient, M (SD) Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

Greece (N ¼ 1,014)

Italy (N ¼ 990)

UK (N ¼ 995)

0.1

0.2

0.1

0.2

7.4 0.2 4.2 3.0

1.6

24.0 0.2 1.8 18.1 3.9

0.8 0.5 0.3 321 (185)

—c

Sweden (N ¼ 921) 0.7 0.1 0.5

35.5 1.4 10.4 16.0 7.7

7.3 0.1 5.9 1.3

Poland (N ¼ 1,000)

Germany (N ¼ 1,003)

6.6 6.0 0.6

0.0

2.5 1.0 0.9 0.6

—c

48.1 46.9 0.9 0.2 0.1

35.0 1.5 10.2 7.9 15.5

25.4 8.5 5.0 7.4 4.6

***

326 (578)

***

453 (152)

225 (268)

187 (104)

38 (54)

439 448 439 475

156 (235) 130 (133) 183 (199) 386 (354) ***

131 (-) 0 (0) 202 (112) 127 (6) .446

35 43 42 45

(162) (187) (124) (144) .575

(36) (80) (49) (79) .789

758 (1006) 771 305 1047 847

(1090) (232) (1378) (1077) .139

All (N ¼ 5,923)

pa

381 (642) 158 (194) 408 (797) 461 (701) .003**

Notes: Amounts in Euros (1 E corresponding to approximately $1.35 U.S.) calculated taking into account purchasing power parities. **p , .01; ***p , .001, for differences between acountries and bclusters (within a country). c Not computable due to low frequencies.

seldom also in Germany, affecting there and in Italy especially wives, and affecting cohabiting/ non-working daughters and supported relatives in Greece and Poland. Carers living in the latter two countries (and cohabiting/non-working daughters in particular) also bemoan very frequently the high costs of services, probably in relation to those mainly addressing the older person’s needs, because support for carers—usually provided by public or voluntary organizations—is normally free of charge in these countries. Ineligibility represents an issue mentioned frequently by wives in Italy and by all other cluster categories in Germany, whereas the lack of appropriate transportation to reach otherwise too-distant services bothers both clusters of Polish daughters in particular. In Sweden and the UK, nonusage is more frequently related to refusal by the older person, probably reflecting a higher level of older people’s empowerment in determining self-tailored care arrangements, this being especially true in the eyes of supported Swedish relatives. Furthermore, more rarely reported reasons for nonusage of services refer to poor service quality and, particularly in the UK, the complicated procedures necessary to access services.

Reasons for Stopping Using Needed Services The reasons why carers stop using needed services, a situation affecting on average a little more than 1 out of 10 carers per country (see Table 12), confirm the central role played by affordability (especially in Germany, Greece, and Poland) but also highlight the importance of service quality (the only 762

exception being Poland) and of local availability of services. Whereas lack of adequate transportation remains a major problem in Poland and Greece, and the loss of entitlement a reason for ‘‘exit’’ particularly in Germany and Italy, in those countries with better developed formal care systems the older person’s attitude represents a frequent reason for carers to stop using services, despite still needing them.

Strategic Service Characteristics When asked about the most important characteristics of services (see Table 13), European carers mentioned two most frequently: that help is available when it is needed most (especially in SEE) and that care workers treat the older person with dignity and respect (particularly in NWE but also in Italy). Both characteristics are crucial—if frequently unmet—above all for non-cohabiting/working daughters, whereas timeliness of support is highly relevant to cohabiting/non-working daughters, as is respect by care workers to supported relatives. These same two clusters are overrepresented among carers indicating as relevant help improving the care recipient’s quality of life, although cohabiting/ non-working daughters show cross-nationally in this respect a much higher degree of dissatisfaction. Italian carers in general and supported carers crossnationally show higher appreciation of the fact that care workers have the required skills and training, whereas British carers in particular attach more importance to help that arrives at the time it is promised. Confirming the findings presented above, The Gerontologist

Table 10. In Your Experience as a Caregiver, Whom or What Do You Consider to Have Caused the Greatest Difficulties to You in Accessing Services/Support? (% Values, by Country and Cluster)

Difficulty

Greece Italy UK Sweden Poland Germany All (n ¼ 811) (n ¼ 790) (n ¼ 918) (n ¼ 507) (n ¼ 858) (n ¼ 759) (n ¼ 4,643)

None/nothing Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

18.6 10.6 13.7 15.7 30.0 .003**

26.1 19.1 21.3 29.4 29.0 .103

40.3 24.5 41.0 43.7 31.7 .017*

43.8 36.0 36.5 53.0 40.5 .113

11.2 9.6 9.4 7.4 11.5 .804

Bureaucratic/complicated procedures Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

15.8 13.6 19.4 11.8 11.7 .322

28.0 32.0 27.0 23.5 30.5 .537

5.4 9.6 8.0 1.9 6.3 .142

7.5

3.6

—c

High costs/financial or economic reasons Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

18.0 26.3 14.5 25.5 10.0 .007**

7.6 8.4 10.1 7.4 8.4 .939

6.1 6.4 4.0 6.8 11.9 .139

3.9

14.6

11.3

18.7 12.4 16.2 14.5 .521

14.9 12.0 5.8 21.4 .008**

Lack of information on how to access services Cluster Cluster Cluster Cluster pb

1 2 3 5

0.0

—c

4.8

0.8

pa

40.1 28.8 24.0 47.7 35.4 .010**

29.1 18.7 23.8 32.8 30.1 ***

***

13.1 18.2 14.8 9.3 15.7 ***

***

—c

18.6 20.3 20.0 16.3 22.5 .711 8.2 11.8 8.0 5.8 8.4 .453

12.8 17.2 12.1 13.6 12.2 .019*

***

—c

29.0 36.0 31.3 27.8 35.4 .547

7.5

12.0

—c

21.1 17.2 10.2 14.6 .161

7.2 12.0 8.1 5.6 .480

12.9 11.4 12.5 14.8 11.5 .863

1.6

14.6 8.8 12.5 16.7 12.5 .369

0.5

8.9

***

11.5 9.4 7.0 10.7 .040*

Distance/lack of transportation Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

20.3 25.3 22.6 23.5 11.7 .175

Long waiting lists Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

8.4 4.5 8.9 11.8 6.7 .133

Low quality of services Inflexible hours for service delivery Unsuitable/inflexible/untailored services Older person’s or carer’s attitude Restrictive eligibility criteria to access services Other

10.0 27.2 6.2 4.4

6.5 1.9 3.0 3.4

9.3 0.8 2.0 4.9

5.7 1.8 10.3 1.6

2.2 0.3 3.9 2.0

2.1 0.8 1.2 4.6

6.1 5.7 4.0 3.6

*** *** *** .001**

2.0 14.2

2.0 14.7

1.2 23.1

1.4 17.4

10.5 19.7

1.8 31.6

3.3 20.2

*** ***

—c

—c

10.6 9.3 22.5 5.9 6.9 .001**

0.7

—c

2.4

6.9

—c 4.1

—c

—c

—c

7.4 9.4 8.4 8.6 4.5 .003**

***

6.6 5.3 9.4 7.2 4.2 .002**

***

Notes: The sum of percent values computed by country might exceed 100%, because respondents could indicate up to three difficulties; percent values for clusters are computed within each cluster. *p , .05; **p , .01; ***p , .001, for differences between acountries and bclusters (within a country). c Not computable due to low frequencies.

affordability of help represents a concern mainly for Polish and Greek carers—but the dissatisfaction rate among those mentioning this item as relevant reaches the highest level (compared to other items) across all countries and clusters—whereas the remaining dimensions play a relatively more marginal role. Vol. 48, No. 6, 2008

763

Sources of Help in Accessing Services The practical implementation of policies aimed at improving carer support must take into account the channels and institutions currently acting as crucial facilitators for carers in accessing services, and

Table 11. In Case There are Services That You or the Care Recipient Need But Have Not Used so Far, What Were the Reasons for This? (% Values, by Country and Cluster) Reason Carers needing services they never used so far N

Greece

Italy

UK

Sweden

Germany

All

pa ***

25.6 251

31.9 300

23.5 230

23.7 205

Lack of information Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

48.3 55.3 34.0 48.6 55.6 .128

48.8 50.4 46.7 54.2 43.2 .799

24.1 20.0 31.7 22.2 20.0 .583

Too expensive Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

50.6 64.5 36.2 48.6 33.3 .007**

34.6 33.0 29.0 20.8 50.0 .067

13.5

8.2

—c

18.9

22.5 19.1 23.3 37.5 22.7 .278

***

40.6 43.4 61.1 26.8 40.4 .085

34.3 42.0 28.6 26.3 33.8 ***

***

—c

48.8 58.7 37.5 44.8 44.4 .380

10.5

7.4

11.8

—c

—c

14.9 15.1 13.2 14.6 16.4 .836

***

—c

21.4 23.7 22.2 14.6 23.1 .695

26.0 34.8 43.8 13.8 16.7 .039*

13.9 14.5 11.1 14.6 13.5 .983

14.8 15.2 20.4 12.8 10.8 .042*

.009**

7.9

10.7

***

—c

—c

12.0 7.4 15.8 9.9 18.4 ***

7.1 1.6 13.4

12.3 3.7 17.6

8.5 4.2 14.0

.178 *** ***

—c

14.6 13.8 18.4 15.8 5.6 .609

12.1

13.3

11.6

—c

—c

—c

Older person’s or carer’s attitude Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

7.0

5.4

21.5 17.4 23.8 22.2 25.0 .862

26.4 12.5 25.0 14.3 43.6 .019*

6.8 17.8 11.9

8.2 2.3 34.1

10.7 0.0 0.0

—c 5.6 2.2 12.5

26.0 1,499 38.6 43.7 31.9 38.4 36.2 .045*

Too distant/not available locally Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

—c

26.6 266 37.4 36.8 27.8 46.3 34.6 .514

9.6

—c

24.7 247 44.1 47.8 37.5 34.5 50.0 .544

Not entitled/eligible to use them Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

Low quality of services Bureaucratic procedures Other

Poland

Notes: The sum of percent values computed by country might exceed 100%, because respondents could indicate up to three difficulties; percent values for clusters are computed within each cluster. *p , .05; **p , .01; ***p , .001, for differences between acountries and bclusters (within a country). c Not computable due to low frequencies.

here there are significant cross-national differences (see Table 14). Although in almost all countries carers (especially wives) see the most relevant help as being provided by health care professionals, informal networks (family, friends, and neighbors) are crucial in Mediterranean countries (across all clusters); municipal social care is acknowledged as the most helpful in Sweden and, to a much lesser extent, in the UK (by cohabiting/non-working daughters and supported relatives in particular). ‘‘Individualist’’ attitudes—probably in connection to a perceived lack in the system’s overall ability to provide satisfying support—seem particularly diffused in Greece but also appear among non-cohabiting/ working daughters in Italy, Sweden, and the UK, 764

whereas the importance of voluntary organizations is more evident in the UK and Germany, especially among wives. A still remarkable role is played by transportation/service proximity in Poland (where telephone availability and related logistic aspects figure in as ‘‘other factors’’), by the availability of the long-term-care insurance in Germany, and by personal savings in Greece and Poland.

Discussion Key Findings Mirroring trends in the United States (Feinberg & Newman, 2004; Wolff & Kasper, 2006), the inThe Gerontologist

Table 12. Are There Any Services That You or the Older Person You Care for Still Need, But Have Stopped Using? If Yes, What Were the Reasons for Your Decision? (% Values, by Country) Reason Carers who stopped using still needed services N Too expensive Low quality of services No longer available Too distant/not available locally No longer entitled/eligible to use them Older person’s or carer’s attitude Other

Greece

Italy

UK

Sweden

Poland

Germany

All

p

8.1 82 38.8 28.8 14.6 17.1 9.0 6.1 0.0

8.5 84 29.9 20.8 22.6 9.5 14.3 4.8 21.4

14.8 147 13.0 26.7 29.9 8.2 7.5 13.6 23.8

13.7 126 12.0 29.9 15.1 2.4 10.3 14.3 30.2

11.3 113 46.9 9.7 15.9 24.8 6.2 2.7 15.0

11.9 119 46.2 24.4 15.1 6.7 17.6 9.2 30.3

11.3 671 29.9 23.5 19.4 10.9 10.6 9.1 21.5

*** *** .004** .007** *** .045* .006** ***

Notes: The sum of percent values (computed by country) might exceed 100%, because respondents could indicate up to three difficulties. p for differences between clusters was not significant (on the whole sample) or not computable due to low frequencies (within a country). *p , .05; **p , .01; ***p , .001, for differences between countries.

creasing difficulties encountered by families caring for dependent older people have recently prompted several European governments to call for improved carer support to strengthen the sustainability of the countries’ long-term-care systems (Mestheneos & Triantafillou, 2005). Our findings show, however, that the extent and impact of these measures is quite different across countries, and this will have to be taken into account if harmonized, EU-wide policies want to ensure effective carer support across the continent. These differences reflect, first and foremost, the level of service provision reported by carers, which currently reaches a perceptible level (in terms of day care, information, and self-help groups) only in Germany, Sweden, and the UK. This compares with a widespread perceived absence and/or inaccessibility of support in Poland, Greece, and Italy, albeit mitigated in the latter country by relevant cashfor-care schemes (available in Germany and the UK, too, but not Sweden). Across carer clusters, services are used frequently by wives and relatives of care recipients and less so by daughters (especially if non-cohabiting/working). Because the latter report higher burden levels, this seems to suggest the need for a better targeting of support by granting a higher importance to subjective dimensions within the carer assessment process, in itself a still quite neglected aspect across all countries. Cross-national differences also concern the extent and type of difficulties experienced by carers, confirming on the whole the already observed NWE–SWE divide (no or rare difficulties in NWE, frequent problems in SWE), with some exceptions. The latter concern widespread bureaucratic obstacles in Germany (in accessing support) and the UK (in preventing service use at all), the affordability of support (which represents a problem in Germany more often than in Italy), the lack of transportation to reach services (less frequent in Italy), and the relevant role of the older person’s attitude in Vol. 48, No. 6, 2008

765

explaining nonuse of support in Sweden and the UK. Across clusters, again, it is mainly daughters (especially if cohabiting/non-working) who more frequently report difficulties with service use. Finally, our findings show that improving future carer support provision EU-wide will require particular attention being paid to the care system’s ability to grant timely responses and to the ability of care staff to treat older recipients with dignity and respect. These service characteristics represent a relevant issue in all countries and across clusters, above all for daughters, especially if non-cohabiting/ working. This is particularly disregarded in Mediterranean countries, where future strategies to improve carer support will have to take into account the crucial role played by informal networks. Cooperation is needed with the cross-nationally most relevant category of ‘‘gatekeepers’’ (i.e., health professionals and, especially in Sweden and the UK, social care services), with voluntary organizations representing a perceptible reality only in the UK and Germany. Policy Implications: National Variations Although our findings aim primarily at providing comparative knowledge to underpin the enhancement and harmonization of measures to sustain family carers at the EU level (Commission, 2005), their policy implications can be differentiated also at a country level to take into account national contexts. In the UK, although the provision of carer support appears to be as widespread as in the other NWE countries considered here, the situation can be considered still unsatisfactory in light of the considerable financial and legislative initiatives recently undertaken to support family carers (Audit Commission, 2004), because existing services are often not seen as relevant to carers’ needs or consistent with their wishes (Lowenstein & Bengtson, 2003). Limited

Table 13. Service Characteristics Considered as Most Important by Carers, by Rate of Satisfaction (% Values, by Country and Cluster)

Characteristic Help is available when you need it most Need remains unmet Cluster 1

Greece Italy UK Sweden Poland Germany All (n ¼ 990) (n ¼ 985) (n ¼ 962) (n ¼ 867) (n ¼ 973) (n ¼ 966) (n ¼ 5,743) pa 57.5 51.7 57.1 56.2 61.4 66.7 55.2 46.9 54.9 60.5 .696 .094

60.3 36.5 62.2 42.2 64.2 47.5 61.8 31.4 54.9 30.4 .372 .106

54.0 25.8 57.8 42.6 51.4 32.5 51.8 24.4 54.0 21.9 .781 .096

48.0 18.7 44.2 27.8 50.6 37.5 47.4 11.0 44.2 22.0 .806 .016*

65.2 21.6 62.6 31.3 67.9 34.7 70.5 17.9 61.7 26.6 .435 .122

39.1 27.9 45.9 26.4 37.7 45.5 36.9 25.7 36.4 23.3 .204 .243

54.1 31.6 56.6 41.5 56.8 48.1 52.7 25.3 49.1 29.0 .005** ***

*** ***

40.2 37.3 30.6 36.1 51.3 44.9 37.9 23.3 36.6 42.3 .001** .119

57.1 22.4 53.7 22.4 61.5 18.5 49.4 11.9 66.7 26.5 .016* .253

51.5 12.1 50.0 17.1 61.0 23.3 49.1 11.4 47.4 7.7 .171 .159

57.4 9.3 55.8

35.3 12.2 35.1 20.0 24.4 5.9 41.0 18.4 43.9 11.1 .035* .410

57.4 12.3 60.3 14.1 60.9 5.3 56.6 14.6 59.4 12.4 .911 .741

49.7 18.0 46.6 21.8 55.1 24.2 48.4 12.3 55.5 17.1 *** .001**

*** ***

33.4 37.2 30.2 33.3 31.0 40.0 42.2 37.5 32.4 14.3 .131 .200

38.8 30.0 37.8 37.5 43.1 31.4 31.5 39.1 37.7 18.9 .418 .113

31.3 17.5 24.5

29.9 12.9 37.2

37.3 14.2 37.6

29.9

27.3

24.8

28.5

41.7

.268 —c

34.0 22.4 34.5 31.5 32.0 26.3 30.0 23.1 35.6 15.0 .078 ***

*** ***

29.5

33.2 16.0 37.4 33.3 29.5 13.0 27.0 15.2 32.7 17.1 .336 .106

Care workers have the required skills/training 21.2 Need remains unmet 47.1 Cluster 1 18.0 53.5 Cluster 2 16.5 65.2 Cluster 3 30.2 32.4 Cluster 5 32.4 43.5 pb .003** .079

47.9 21.2 45.2 15.9 51.4 17.1 47.2 19.4 45.1 27.7 .711 .280

25.5 25.3 26.5

33.0 26.0 30.2

31.9 16.6 32.8

23.0

39.7

24.5

36.5

27.9

28.5

38.3

29.0

32.1 24.3 31.4 23.4 30.0 30.7 33.7 18.5 35.4 23.5 .122 .070

*** ***

25.7

33.2 16.5 29.9 14.3 31.9 7.7 36.1 14.3 35.0 20.3 .618 .638

Help arrives at the time it is promised Need remains unmet Cluster 1

26.9 30.8 24.4 31.7 22.0 47.6 27.0 31.8

35.9 28.4 35.3 37.9 36.2 30.0 30.9 39.1

30.3 15.1 25.2

24.9 16.0 21.1

*** ***

35.9

30.4

23.8

23.8

29.1 28.1 24.9 35.4 29.0 34.8 25.3 26.4

Cluster 2 Cluster 3 Cluster 5 pb Care worker treats elder with dignity/respect Need remains unmet Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb Help improves elder’s quality of life Need remains unmet Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

Cluster 2 Cluster 3

26.9 54.0 23.3 53.7 24.1 65.7 21.6 56.0

.864 —c

.914 —c

70.1 52.6 64.2 .020* —c

.010* —c

.085 —c 29.8 19.6 30.2 25.0 31.0 17.6 25.7 11.1

.308 —c

26.1 32.8 37.8

(Table 13 continues on next page)

766

The Gerontologist

Table 13. (Continued)

Characteristic Cluster 5

Greece Italy UK Sweden Poland Germany All (n ¼ 990) (n ¼ 985) (n ¼ 962) (n ¼ 867) (n ¼ 973) (n ¼ 966) (n ¼ 5,743) pa 39.4 53.6 .028* .690

25.9 30.0 .846 .530

40.9 21.7 .446 .357

29.2 21.9 .750 .592

33.6 .140 —c

.465 —c

27.7 82.2 34.3

20.0 72.2 17.7

12.1 53.4 10.8

5.1 66.7 2.3

16.5

15.6

11.4

3.4

Cluster 3

31.9

27.0

18.2

4.3

Cluster 5

31.0

22.2

10.2

4.2

18.4 50.9 21.6 69.9 24.6 60.0 16.4 42.9 18.4 41.4 .460 .150

20.1 62.2 23.5 70.0 17.5 63.2 20.8 65.9 17.9 56.7 .006** .096

*** ***

Cluster 2

36.2 46.3 35.9 48.9 39.7 50.0 43.4 53.1 27.1 34.6 .072 .489 9.7 9.1 9.5 10.2 6.2 5.8

14.7 13.2 12.5 12.7 6.9 10.5

13.1 12.4 11.0 10.1 9.2 8.1

*** *** *** *** *** ***

pb Help provided is not too expensive Need remains unmet Cluster 1

pb Help focuses on both carer’s and elder’s needs Care worker treats carer with respect Help is provided by same care worker Help fits in with your own routines Carer’s views and opinions are listened to Help improves carer’s quality of life

.001** —c 23.6 17.5 6.2 16.3 6.2 12.9

.138 —c 13.0 9.0 6.3 7.9 4.7 4.6

.234 —c 8.4 12.0 11.5 10.6 15.0 10.1

.926 —c 8.9 13.5 20.6 2.6 16.9 4.1

22.6

30.2 25.4 .033* .056

Notes: Percentages on service characteristics are based on all respondents, percentages on ‘‘need remains unmet’’ (data reported for the first six characteristics only) are based on those respondents who had previously rated the related service characteristic as ‘‘most important.’’ *p , .05; **p , .01; ***p , .001, for differences between acountries and bclusters (within a country). c Not computable due to low frequencies.

knowledge on how to access available help, despite a statutory right to an assessment of carers’ need, and bureaucratic procedures imposed by professionals perceived primarily as gatekeepers rationing resources rather than partners in the care process, compound such difficulties (McKee, Brown, & Nolan, 2006). Sweden’s recent ‘‘rediscovery’’ of the family in providing elder care has been reflected in an increased provision of support for carers through local authorities, primarily in the Scandinavian tradition of in-kind services (Krevers, Magnusson, Johnasson, & O¨berg, 2006). This contributes to explaining the comparatively high uptake of day care, counseling, and respite services observed in this country, as well as the relatively fewer difficulties experienced by carers in accessing them, the one big exception being represented by the frequent refusal to use needed services because of the older person’s attitude, in possible connection to the high importance attached by Swedish respondents to the delivery of respectful treatment by professional carers. German carers, too, benefit from the extensive range of interventions introduced by the longterm-care insurance scheme (Geraedts, Heller, & Harrington, 2000), especially in terms of adequate information, timely service delivery, and substantial Vol. 48, No. 6, 2008

767

care allowances. The latter also provide a possible explanation as to why financial considerations often represent a reason for not (or stopping) using needed services among German carers, due to carers’ stronger role as service ‘‘consumers’’ rather than ‘‘users’’ (Do¨hner, Kofahl, Lu¨decke, & Mnich, 2006). Carers in the Mediterranean and Eastern European countries share an approach to elder care anchored in the traditional values of family-based help, implicit respect for older people, and the crucial role of women (in connection with a low female participation rate in the labor market). In Greece, the lack of formal public support for carers and the financial barriers preventing many of them from accessing services appear to be particularly challenging, thus representing a threat to both carers’ current well-being and their future income in older age (Triantafillou, Mestheneos, Prouskas, Goltsi, & Loukissis, 2006). This is also partly true for Italian carers, who can count, however, on a much more generous provision of public care allowances (Quattrini, Melchiorre, Balducci, Spazzafumo, & Lamura, 2006), as reflected by the relatively lower number of carers bemoaning support affordability. This situation allows Italian families to access private care, mainly by employing live-in, often undeclared migrant care workers

Table 14. Whom or What Do You Consider to Have Been the Greatest Help to You in Accessing Services/Support? (% Values, by Country)

Greatest Help

Greece Italy UK Sweden Poland Germany All (n ¼ 781) (n ¼ 899) (n ¼ 690) (n ¼ 769) (n ¼ 875) (n ¼ 913) (n ¼ 4,927)

Health care professionals Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

30.6 30.8 31.4 29.3 32.8 .975

50.5 54.1 50.0 54.9 48.0 .606

42.5 41.1 45.1 47.6 38.0 .622

39.3 20.5 31.0 52.0 26.1 ***

Family, friends, and neighbors Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

41.6 37.9 40.5 48.9 43.1 .368

31.3 28.8 31.0 31.7 37.3 .359

10.9 13.7 8.5 11.0 16.5 .458

7.7 7.7 8.5 8.2 7.8 .998

Social care or municipal services Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

16.6 18.1 19.0 12.0 15.5 .519

12.8 17.1 11.0 17.1 16.7 .527

22.2 37.0 19.5 29.3 30.4 .115

50.6 64.1 43.7 46.4 59.1 .031*

Carer’s personal experience Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

19.7 15.9 19.8 15.2 29.3 .108

8.0 4.7 15.0 2.4 7.3 .002**

5.5 6.8 11.0 4.9 5.1 .387

8.8 5.1 12.7 8.2 14.8 .175

1.0

2.6

Voluntary organizations Cluster 1 Cluster 2 Cluster 3 Cluster 5 pb

4.9 7.7 2.5 9.8 1.7 .049*

7.8 8.2 6.0 7.3 8.7 .877

10.4 13.7 11.0 15.9 10.1 .683

1.8

Advertisements (newspapers, leaflets, etc.) Good transportation/proximity to services Health/care insurance Financial resources, savings None/nothing Don’t know, never tried to access services Other

7.2 1.2 5.1 7.4 0.1 0.5 0.3

4.0 0.6 0.1 2.0 6.0 0.7 8.1

1.2 0.7 0.0 0.7 12.2 13.5 7.5

0.8 1.4 0.1 0.1 8.5 1.4 3.9

pa

27.9 34.5 26.2 22.0 36.1 .086

56.1 54.7 44.8 60.5 59.5 .175

41.5 43.8 38.2 45.3 43.8 .090

***

11.2 9.2 4.6 10.1 9.3 .634

23.4 21.0 29.3 21.1 26.8 .357

21.4 24.1 22.7 19.4 23.7 .137

***

4.7 7.6 1.5 0.9 13.4 .001**

12.0 14.9 13.8 10.5 14.6 .720

19.0 19.4 18.1 22.7 24.0 .033*

***

7.9 8.3 5.2 10.5 8.3 .692

8.4 7.6 12.5 7.1 9.5 .006**

***

9.7 9.4 8.6 10.5 9.8 .980

6.2 8.0 5.0 7.1 7.2 .232

***

6.2 0.3 11.4 0.2 6.9 5.0 10.0

4.2 3.0 3.0 2.9 7.5 5.7 9.0

*** *** *** *** *** *** ***

—c

—c

—c 5.3 13.0 0.0 7.0 11.9 13.8 22.4

Notes: The sum of percent values (computed by country) might exceed 100%, because respondents could indicate up to three sources of help. *p , .05; **p , .01; ***p , .001, for differences between acountries and bclusters (within a country). c Not computable due to low frequencies.

(Polverini & Lamura, 2004), who, by providing 24-hr home supervision for the older persons, end up representing a great source of relief to primary kin caregivers (Hillman, 2005). Though sharing a mainly family-based approach, Polish carers seem more frequently affected by financial difficulties, lack of adequate transportation, and long waiting lists in accessing services, possibly due to the still ongoing transition from the former socialist organization of the economy and care service system (Pe˛dich, 2006). This situation is, however, not always reflected in terms of unmet need, possibly due to lower expectations than most of 768

their Western European counterparts (Lamura et al., 2006) and to the protecting role played by the widespread backup granted to families by the Catholic church (Wojszel, 2006). Concluding Remarks Even in those countries that have introduced more widespread support programs and policies for carers—such as the UK, Sweden, and Germany— these interventions appear to reach only a limited proportion of the caregivers potentially needing them. This possibly reflects the largely ‘‘reactive’’ The Gerontologist

rather than ‘‘proactive’’ nature of these services (Audit Commission, 2004), so that, similar to what is observed in other continents (Feinberg & Newman, 2004; Guberman et al., 2003), a systematic assessment of carers’ needs remains far from routine and mainly service-driven across Europe. Even when support is available, it is not rarely refused by older people, even if carers would wish to access it, thus suggesting that in countries like Sweden, the UK, and Germany, increasing the acceptability and customization of already available services should become a more systematically pursued aim. Lack of information remains a key factor preventing many European carers from adequately accessing support services, especially when carers are isolated, a trend that is also increasing in the United States (Wolff & Kasper, 2006). This phenomenon might seem a paradox in today’s Information and Communication Technology age, but it can partly be explained by the large number of carers who, older people themselves, may be not familiar with innovations in this area, as well as by the dearth of high-tech-based applications in this field in Europe (Magnusson & Hanson, 2004). This is an area where major investment could provide promising developments to improve service accessibility in the future, whereas more attention to lack of transportation in remote areas is required particularly in Poland and Greece. A further aspect clearly emerging from the presented findings is the need to strengthen support to working carers. The overlapping of family and professional responsibilities in the employed population, especially for women of a mature age, represents a crucial challenge in the light of current EU policy goals of increasing employment rates of women and older workers (Commission, 2005). This will require appropriate investments in order to provide more targeted and widespread services and opportunities to allow for a better work–family balance (Anderson, 2006). In light of the high level of dissatisfaction reported by Mediterranean carers with regard to timeliness and respectfulness of service provision, it is not surprising that reliance on migrant care workers has become a widespread means to provide tailored respite care in the community (Polverini & Lamura, 2004). Because this response is, however, increasingly sought also in Central Europe (Hillman, 2005), an analysis of its possible drawbacks at the European level in terms of quality of care, exploitation of foreign migrants, and ‘‘care drain’’ effects in sending countries should also not be ignored. Unless systematic carer-centered measures and practices are implemented to enable formal support providers to carefully assess, understand, and address family carers’ needs—involving carers themselves in designing interventions in partnership (Nolan & Mestheneos, 2006)—it is likely that even those limited specific carer support services available across Vol. 48, No. 6, 2008

769

Europe will remain underutilized, and that carers will keep on seeking help from traditional care services (e.g., the general practitioner) not designed to address their specific needs and therefore remain at risk of being improperly burdened (Lamura et al., 2006).

Study Limitations The following limitations need to be considered when interpreting the reported results. First, comparing cross-national quantitative information on care service provision implies an almost inevitable margin of uncertainty due to the never perfect ‘‘cultural equivalence’’ of concepts and content, nationally defined services being fully interpretable only in their specific context. Consequently, the cross-national data presented here should be seen as well-informed estimates rather than precise statistics. Second, due to the article’s primarily descriptive interest in the provision of EU policy–relevant evidence of cross-national differences, single-country, in-depth analyses of associations between specific types of support and factors potentially affecting their use or carers’ satisfaction with them have been omitted here but would need to be performed in order to formulate more targeted policy reflections. For similar reasons, explanatory analyses of factors affecting cross-national variations in service use are not included in this mainly descriptive article and represent an inevitable future step for identifying, on the background of a clear predictive model, relevant dimensions explaining the observed differences. Third, the choice of variables used to perform the cluster analysis aimed at identifying cross-nationally comparable carer profiles represents only a partial attempt to control for crucial factors affecting carer support use and satisfaction, not taking into account other potentially strategic variables to be identified through more in-depth research, including analyses on causality of associations by means of longitudinal data on determinants of change in carer support use, as collected by the EUROFAMCARE follow-up study (Bien et al., 2006). A related final consideration is that Aneshensel’s stress and coping model used here does not seem suitable to properly address the cross-national differences representing the focus of this article, so a macro-level model should be developed to allow for a more pertinent interpretation of service use variations across countries. Despite these limitations, the findings presented here represent, to our knowledge, the first based on a European data set built by means of a description provided by carers themselves—and for Greece, Italy, and Poland, the first national survey of this kind ever performed (O¨berg et al., 2006). These findings thus provide a crucial understanding of current cross-national variations in carers’ experience of support services in Europe.

References Alber, J., & Ko¨hler, U. (2004). Health and care in an enlarged Europe. Dublin, Ireland: European Foundation. Anderson, R. (2006). Working carers in the European Union. In S. Harper (Ed.), The family in an ageing society (pp. 95–113). Oxford, England: Oxford University Press. Aneshensel, C. S., Pearlin, L. I., Mullan, J. T., Zarit, S. U., & Whitlach, C. J. (1995). Profiles in caregiving: The unexpected career. San Diego, CA: Academic Press. Anttonen, A., & Sipila, J. (1996). European social care services: Is it possible to identify models? Journal of European Social Policy, 6, 87–100. Arksey, H., & Hirst, M. (2005). Unpaid carers’ access to and use of primary care services. Primary Health Care Research and Development, 6, 101– 116. Audit Commission. (2004). Support for carers of older people. Independence and well-being 5. London: Audit Commission. Banks, P. (2004). Policy framework for integrated care for older people. London/Dublin: King’s Fund/EHMA. Bien, B., Rothgang, H., Lamura, G., Triantafillou, J., Mnich, E., McKee, K., et al. (2006). The one year follow-up study: Preliminary results. In EUROFAMCARE Consortium (Ed.), Services for supporting family carers of older dependent people in Europe: The Trans-European Report (pp. 201–250). Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/ extern/eurofamcare/publikationen.php?abs=8 Brereton, L., & Nolan, M. (2003). Seeking partnerships between family and professional carers: Stroke as a case in point. In M. Nolan, U. Lundh, G. Grant, & J. Keady (Eds.), Partnerships in family care: Understanding the caregiving career (pp. 50–68). Maidenhead, England: Open University Press. Commission of the European Communities. (2005). Confronting demographic change: A new solidarity between the generations. Brussels, Belgium: Commission of the European Communities. Daatland, S. O., & Herlofson, K. (2003). Norms and ideals about elder care. In A. Lowenstein (Ed.), Old age and autonomy: The role of service systems and intergenerational family solidarity (pp. 127–164). Haifa, University of Haifa. Do¨hner, H., Kofahl, C., Lu¨decke, D., & Mnich, E. (2006). EUROFAMCARE: The National Survey Report for Germany. Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/extern/eurofamcare/publikationen.php?abs=9 EUROFAMCARE Consortium. (Ed.). (2006). Supporting services for family carers of older people in Europe. Trans-European Report of the 6-country EUROFAMCARE survey. Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke. uni-hamburg.de/extern/eurofamcare/publikationen.php?abs=8. EUROSTAT. (2007). Living conditions in Europe—Data 2002–2005. Luxembourg: Office for Official Publications of the European Communities. Feinberg, L. F., & Newman, S. L. (2004). A study of 10 states since passage of the National Family Caregiver Support Program: Policies, perceptions and program development. The Gerontologist, 44, 760–769. Fillenbaum, G. G., & Smyer, M. A. (1981). The development, validity and reliability of the OARS Multidimensional Functional Assessment Questionnaire. Journal of Gerontology, 36, 428–434. Fulmer, T., Paveza, G., VandeWeerd, C., Fairchild, S., Guadagno, L., BoltonBlatt, M., et al. (2005). Dyadic vulnerability and risk profiling for elder neglect. The Gerontologist, 45, 525–534. Geraedts, M., Heller, G., & Harrington, C. (2000). Germany’s long-term-care insurance: Putting a social insurance model into practice. Milbank Quarterly, 78, 375–401. Guberman, N., Nicholas, E., Nolan, M., Rembicki, D., Lundh, U., & Keefe, J. (2003). Impacts on practitioners of using research-based carer assessment tools: Experiences from the UK, Canada and Sweden, with insights from Australia. Health & Social Care in the Community, 11, 345–355. Hillman, F. (2005). Migrants’ care work in private households. In B. PfauEffinger & B. Geissler (Eds.), Care and social integration in European societies (pp. 93–114). Bristol, England: Policy Press. Jani-le-Bris, H. (1993). Family care of dependent older people in the European Union. Dublin, Ireland: European Foundation. Kautto, M. (2002). Investing in services in West European welfare states. Journal of European Social Policy, 12, 53–65. Krevers, B., Magnusson, H., Johansson, L., & O¨berg, B. (2006). EUROFAMCARE: The National Survey Report for Sweden. Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/extern/eurofamcare/publikationen.php?abs=9 Kro¨ger, T. (Ed.). (2003). Families, work and social care in Europe. Brussels, Belgium: European Commission. Lamura, G., Mnich, E., Bien´, B., Krevers, B., McKee, K., Mestheneos, L., et al. (2007, July). Dimensions of future social service provision in the

770

ageing societies of Europe. Keynote lecture presented at the VI European Congress of the International Association of Gerontology and Geriatrics, St. Petersburg, Russia. Lamura, G., Wojszel, B., Mnich, E., Krevers, B., Mckee, K., & Mestheneos, E. (2006). Experiences and preferences of family carers in the use of care and support services. In EUROFAMCARE Consortium (Ed.), Services for supporting family carers of older dependent people in Europe: Characteristics, coverage and usage. The Trans-European Report (pp. 144–182). Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/extern/eurofamcare/ publikationen.php?abs=8 Leichsenring, K. (2004). Developing integrated health and social services for older persons in Europe. International Journal of Integrated Care, 4, e10. Lonner, W. J., & Berry, J. W (1986). Sampling and surveying. In W. J. Lonner & J. W. Berry (Eds.), Field methods in cross-cultural research (pp. 85–110). Beverly Hills, CA: Sage. Lowenstein, A., & Bengtson, V. (2003). Challenges of global ageing to families in the twenty-first century. In V. Bengtson & A. Lowenstein (Eds.), Global aging and challenges to families (pp. 327–354). New York: Aldine de Gruyter. Lowenstein, A., & Ogg, J. (Eds.). (2003). Old age and autonomy: The role of service systems and integrated family solidarity, final report. Haifa, Israel: Centre for Research and Study of Aging. Magnusson, L., & Hanson, E. (2004). Working with older people and their carers to research and develop responsive ICT support services. Health Informatics Journal, 10, 83–88. Mahoney, F. I., & Barthel, D. (1965). Functional evaluation: The Barthel Index. Maryland State Medical Journal, 14, 56–61. McKee, K. J., Balducci, C., Krevers, B., Mnich, E., Prouskas, C., & Wojszel, B. (2006). The EUROFAMCARE Common Assessment Tool (CAT): Item and scale development and description. In EUROFAMCARE Consortium (Ed.), Supporting services for family carers of older people in Europe: Trans-European report of the 6-country EUROFAMCARE survey (pp. 41–58). Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/extern/eurofamcare/ publikationen.php?abs=8 McKee, K., Brown, J., & Nolan, M. (2006). EUROFAMCARE: The United Kingdom National Survey Report (NASURE). Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/extern/eurofamcare/publikationen. php?abs=9 Mestheneos, L., & Triantafillou, J. (2005). Supporting family carers of older people in Europe. The Pan-European Background Report. Mu¨nster, Germany: LIT-Verlag. Available online at www.uke.uni-hamburg.de/ extern/eurofamcare/publikationen.php?abs=1 Mnich, E., Balducci, C., Krevers, B., McKee, K., Prouskas, C., & Wojszel, B. (2006). Typology of caregiving situations in Europe: A cluster analysis approach. In EUROFAMCARE Consortium (Ed.), Supporting services for family carers of older people in Europe: Trans-European report of the 6-country EUROFAMCARE survey (pp. 127–143). Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/extern/eurofamcare/ publikationen.php?abs=8 Mourre, G. (2005). Focus: Ageing populations in the euro area: What is the impact on employment and growth? Quarterly Report on the Euro Area, 4, 20–27. Munday, B. (2003). European social services: A map of characteristics and trends. Strasbourg, France: Council of Europe. Nolan, M., & Mestheneos, L. (2006). Issues and challenges in carer support: A consideration of the literature. In EUROFAMCARE Consortium (Ed.), Supporting services for family carers of older people in Europe: TransEuropean report of the 6-country EUROFAMCARE survey (pp. 15– 40). Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/extern/eurofamcare/publikationen.php?abs=8 O¨berg, B., Quattrini, S., Brown, J., Lu¨decke, D., Prouskas, C., & Synak, B. (2006). Sampling, recruitment and representativeness. In EUROFAMCARE Consortium (Ed.), Supporting services for family carers of older people in Europe: Trans-European report of the 6-country EUROFAMCARE survey (pp. 64–99). Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/ extern/eurofamcare/publikationen.php?abs=8 Organisation for Economic Co-Operation and Development (OECD). (2005) Long-term care for older people: OECD Study. Paris: OECD. Pearlin, L. I., Harrington, C., Powell-Lawton, M., Montgomery, R. J. V., & Zarit, S. H. (2001). An overview of the social and behavioural consequences of Alzheimer’s disease. Aging and Mental Health, 5(S1), S3–S6. Pe˛dich, W. (2006). State of the art of the literature on support services for family carers of older people in Poland. In B. Bien´ (Ed.), Family

The Gerontologist

caregiving for the elderly in Poland (pp. 25–30). Bialystok, Poland: Trans Humana. Polverini, F., & Lamura, G. (2004). Labour supply in care services. National report on Italy. Dublin, Ireland: European Foundation. Available online at http://assets.aarp.org/www.aarp.org_/articles/GAP/LabourSupplyin CareServices_ItalianReport.pdf Quattrini, S., Melchiorre, M. G., Balducci, C., Spazzafumo, L., & Lamura, G. (Eds.).(2006). EUROFAMCARE: The National Survey Report for Italy. Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/extern/eurofamcare/ publikationen.php?abs=9 Rostgaard, T. (2002). Caring for children and older people in Europe: A comparison of European policies and practices. Policy Studies, 23, 51– 68. Salvage, A. V. (1995). Who will care: Future prospects for family care of older people in the European Union. Dublin, Ireland: European Union Foundation. Scottish Executive. (2005). The future of unpaid care in Scotland. Headline report and recommendations. London: OPM. Tomassini, C., Glaser, K., Wolf, D., Broese van Grenou, M., & Grundy, E. (2004). Living arrangements among older people: An overview of trends in Europe and the USA. Population Trends, 115, 24–34.

Vol. 48, No. 6, 2008

771

Triantafillou, J., Mestheneos, E., Prouskas, C., Goltsi, V., & Loukissis, A. (2006). EUROFAMCARE: The National Survey Report for Greece. Hamburg, Germany: Medical University Hamburg–Eppendorf. Available online at www.uke.uni-hamburg.de/extern/eurofamcare/publikationen. php?abs=9 Wojszel, Z. B. (2006). Services and allowances for the elderly and their carers. In B. Bien´ (Ed.), Family caregiving for the elderly in Poland (pp. 126– 154). Bialystok, Poland: Trans Humana. Wolff, J. L., & Kasper, J. D. (2006). Caregivers of frail elders: Updating a national profile. The Gerontologist, 46, 344–356. Zarit, S. H., & Leitsch, S. A. (2001). Developing and evaluating community based intervention programmes for Alzheimer’s patients and their caregivers. Aging and Mental Health, 5(Suppl. 1), S84–S98. Zodikoff, B. D. (2007). Gender differences in the community service use attitudes of older spousal caregiver-care recipient couples. Home Health Care Services Quarterly, 26, 1–20.

Received April 25, 2007 Accepted December 10, 2007 Decision Editor: William J. McAuley, PhD