1. Pan- European Network Core Group EUROFAMCARE 1 Care-Arrangements against the background of various welfare states models. First results of the EU-Project EUROFAMCARE Eva Mnich, Hanneli Döhner The EUROFAMCARE group: Germany: Döhner H. (project coordinator), Kofahl C., Luedecke D., Mnich E. (Hamburg) and Rothgang H., Becker R. (Bremen); Greece: Mestheneos E. (PI), Triantafillou J. (PI), Prouskas C., Mestheneos K.; Italy: Lamura G. (PI), Balducci C., Melchiorre M.G., Quattrini S., Spazzafumo L.; Poland: Bien B. (PI), Wojszel B., Synak B., Czekanowski P., Bledowski P., Pedich W,; Sweden: Öberg B. (PI), Krevers B., Johansson S.L.; United Kingdom: McKee K. (PI), Barber L., Brown J., Nolan M. “Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage” E U R O F A M C A R E

2. Pan- European Network Core Group EUROFAMCARE 2 Six Countries Comparative Study AGE – European Older People‘s Platform Brussels University of Hamburg Italian National Research Centre on Ageing INRCA Ancona National School for Public Health SEXTANT Athens University of Bremen The Medical Academy of Bialystok & University of Gdansk Linköping University & Socialstyrensen Stockholm University of Sheffield

3. Pan- European Network Core Group EUROFAMCARE 3 Aims EUROFAMCARE will provide a European review of the situation of family carers of elderly people in relation to the existence, familiarity, availability, use and acceptability of supporting services. EUROFAMCARE will push a change management process at various policy levels to promote social and health policies towards a partnership approach between family carers, professional providers and cared-for.

4. Pan- European Network Core Group EUROFAMCARE 4 Methodology  In depth studies in the 6 countries  6.000 Interviews with family caregivers  Elderly in need of support aged over 65  Extent of care/support 4 or more hours per week  Postal or phone interviews (follow-up study) after one year  Postal/phone or face to face interviews with service providers  Background Reports provided by both the 6 core countries and the 17 Pan-European countries

5. Pan- European Network Core Group EUROFAMCARE 5 Questions for Data Analysis  Differences of existing service provision on the one hand and on the other hand the knowledge about services and their availability,  The use and non-use of such service provision with fundamental reasons in special interest,  Experience with as well as evaluation of such services with respect to effectiveness and efficiency,  Claimed needs of support, resulting from the individual family situation, which beside others may point out a lack of specific services,  Specific types of family care situation and their relation to specific services, respectively the lack of services.

6. Pan- European Network Core Group EUROFAMCARE 6 Organizations of volunteers Other informal assistants Service Provider Elder Needs > Ressources Caregiving Relatives (Ressources etc.) The involved actors Supply of support

7. Pan- European Network Core Group EUROFAMCARE 7 Procedure Caregiver - Male / female - Higher / lower educational status -Not gainfully employed / gainfully employed - Cares up to 2 years / more than 2 years - Support / no support during illness - Low burdened / burdened (COPE) - Low / high life quality - Other /same generation Care-arrangements - rural / urban - separate / shared household Cared-for - Male / female - under / over 80 years - no / cognitive impairments (subjective) - low / high functional impairments (ADL / IADL) - No need / need of financial support in dichotomous criteria almost 33.000 combinations

8. Pan- European Network Core Group EUROFAMCARE 8 Procedure Family-Carer Care-arrangement Cared-for Reduction on cluster Country-specific key aspects of care-arrangements Relevance of support according to care- arrangements in countries Relevance of support according to care- arrangements Country-specific relevance of support

9. Pan- European Network Core Group EUROFAMCARE 9 - Sex - Same or other generation - Education status - Gainful employment - Duration of care - Strain due to care - Perceived subjective life-quality - Sex - Age - Cognitive impairments - Functional impairments Need of financial support - Carer and Cared-for are living in same household Variables for construction of domestic care-arrangements Items referring to family-carer Items referring to elder - Assisstance during illness - supplementary - Rural or urban residential area

10. Pan- European Network Core Group EUROFAMCARE 10 1Female (Carer)6No support available 9Female (Cared-for)13Need of financial support (Cared-for) 2Same generation7High strain1080 years and older (Cared-for) 14Shared household 3Low educational status8Life-quality is high 11Cognitive impairments 15Rather urban region 4Gainfully employed12Functional impairments 5Duration of care more than 2 years Care-arrangement 1 Care-arrangement 2 Prozent von... 1 2 3 4 56 78 910 1112 131415 12 3 4 5 678 910 1112 131415 N=891 N=851

11. Pan- European Network Core Group EUROFAMCARE 11 1 Female (Carer)6No support available 9Female (Cared-for)13Need of financial support (Cared-for) 2Same generation7Strain is high1080 years and older (Cared-for) 14Shared household 3 Low educational status8Life-quality is high11Cognitive Impairments 15Rather urban region 4Gainfully employed12Functional impairments 5Duration of care more than 2 years Care-arrangement 3 Care-arrangement 4 Prozent von... 12 3 4 5 6 78 910 111213 14 15 12 3 4 5 6 78 910 111213 14 15 N=824 N=419

12. Pan- European Network Core Group EUROFAMCARE 12 1 2 345 678 910 1112 13 14 15 1Female (Carer)6No support available 9Female (Cared-for)13Need of financial support (Cared-for)) 2Same generation7Strain is high1080 years and older (Cared-for) 14Shared household 3 Low education status8Life-quality is high11Cognitive impairments 15Rather urban region 4Gainfully employed12Functional impairments 5Duration of care more than 2 years Care-arrangement 5 Care-arrangement 6 Prozent von... 1 2 345 678 910 1112 13 14 15 N=775 N=571

13. Pan- European Network Core Group EUROFAMCARE 13 1 Female (Carer)6No support available 9Female (Cared-for)13Need of financial support (Cared-for) 2Same generation7Strain is high1080 years and older (Cared-for) 14Shared household 3High education status8Life-quality is high11Cognitive Impairments 15Rather urban region 4Gainfully employed12Functional impairments 5Duration of care more than 2 years Care-arrangement 7 Percentage of... 1 2 3 4 56 78 910 1112 13 14 15 N=1053

14. Pan- European Network Core Group EUROFAMCARE 14 Distribution of care-arrangements N=5384

15. Pan- European Network Core Group EUROFAMCARE 15 Distribution of care-arrangements in the six countries N=889N=792 N=884 N=972 N=949N=898

16. Pan- European Network Core Group EUROFAMCARE 16 Dimensionanalysis of important forms of support Financial-technical support  More money for care  Adjustment of housing Support in planning of future care Stress coping, Problemorientation  Visiting self-help groups for family carers  Talking about problems Training of care skills Spending more time with the family Support in handling family disputies Autonomy, Time souvereignty  Respite from care  Attendance to activities beyond care Activities for the cared-for Combining care with mit employment Spending more time with the family Training and Information  Information about available support possibilities  Information about diseases  Training of care skills

17. Pan- European Network Core Group EUROFAMCARE 17 Overview of focal needs in respective countries categorized in groups of care-arrangements (CA) GreeceTotal CA 1CA 2CA 3CA 4CA 5CA 6CA 7 finan.-technical. support + (+)(+) ++ Stress coping., Problemorienta. + (+)(+) -- Relief of strain, time sovereignt. - Training and Information (+)(+)(+)(+) + (+)(+) PolandTotalCA 1CA 2CA 3CA 4CA 5CA 6CA 7 finan.-technical. support +++ +++ (+)(+) Stress coping., Problemorienta. (-)(-)(+)(+) -- (-)(-)(-)(-) - Relief of strain, time sovereignt. (+)(+) -- Training and Information --- --

18. Pan- European Network Core Group EUROFAMCARE 18 Overview of focal needs in respective countries categorized in groups of care-arrangements (CA) SchwedenTotal CA 1CA 2CA 3CA 4CA 5CA 6CA 7 finanz.-techn. Unterstützung - Stress coping., Problemorienta + + (+)(+) + Relief of strain, time sovereignt. (+)(+) ++ Training and Information GermanyTotalCA 1CA 2CA 3CA 4CA 5CA 6CA 7 finanz.-techn. Unterstützung -- - Stress coping., Problemorienta (+)(+) - (-)(-) - - Relief of strain, time sovereignt. - Training and Information (-)(-) -

19. Pan- European Network Core Group EUROFAMCARE 19 Overview of focal needs in respective countries categorized in groups of care-arrangements (CA) ItalyTotal CA 1CA 2CA 3CA 4CA 5CA 6CA 7 finan.-technical. support + + Stress coping., Problemorienta. Relief of strain, time sovereignt. -- - (-)(-) Training and Information +++++ EnglandTotalCA 1CA 2CA 3CA 4CA 5CA 6CA 7 finan.-technical. support ++ Stress coping., Problemorienta Relief of strain, time sovereignt. + + (+)(+) Training and Information +

20. Pan- European Network Core Group EUROFAMCARE 20 Overview of focal needs in respective countries categorized in cluster groups Increased need of both practical and technical support especially in Care- arrangements with high subjective and objective strain. Furthermore the possibility of stress coping through discussions or relative groups is a crucial kind of support for both groups (cluster 1 and 2). Respite from Care is less important for caring wives / women (cluster 3). Greece Italy In generell caring wives / women have little need for temporary relief for care. In case of gainful employment combined with high demanding care carers are more likely to ask for relief (cluster 2). Increased need of information have those groups with little need of care as well as a gainful employment of the caregiver, (cluster 5 and 6). Practical- technical support wish gainfully employed carers with both high as well as low levels of caregiving (cluster 2 and 5)

21. Pan- European Network Core Group EUROFAMCARE 21 Overview of focal needs in respective countries categorized in cluster groups UK Family Carers who provide high level of care (cluster 1 and 2) are very likely to request temporal relief from care. Information are at most requested by caring husbands/ men (cluster 4). Practical-technical support is very important for gainfully employed carers. This concern those that provide heavy care as well as those with less dependent (cluster 2 and 6). Schweden Here, highly burdend, gainfully employed carers strongly wish to get the possibility for respite from care (cluster 2). The possibility to discuss their problems with others is very important for those women who are highly straind (cluster 1) as well as for the caring wives of the third Cluster. Practical-technical support plays a minor role in all swedish care-arrangements.

22. Pan- European Network Core Group EUROFAMCARE 22 Overview of focal needs in respective countries categorized in cluster groups Poland The wish for relief plays a negligible role for married couples in Poland (cluster 3 and 4). In generell information plays a minor role, if at all this is relevant for caring husbands (cluster 4). Supportive talks are primarily sought by gainfully employed and high burdend carers (cluster 2). The in generell high demand for practical-technical support is forcefully expressed by gainfully employed carers, independent from time and effort spent for care (cluster 2 and 6) Deutschland Practical-technical support plays a comparatively minor role in all groups. Temporary relief is fewest wished by caring husbands/men (cluster 4). By comparison the average demand on information is the least in less heavy cases (cluster 5). Provision of conversation possibilities are most important for both not gainfully employed caring women with high burden (cluster 1) and caring wives/women (cluster 3).

23. Pan- European Network Core Group EUROFAMCARE 23 Summary + - finan./technical (stress coping) * + (finan./techn.) * (time autonomy)* (Information)* - + Information (finan./technical) * - Time autonomy + finan./technical (information) * (stresscoping) * - (stress coping) * + finan./technical - Information (time autonomy) ** + Stress coping - finan./technical * in special care-arrangements ** concerns caring spouses / partner

24. Pan- European Network Core Group EUROFAMCARE 24 Means on need dimensions categorized in care-arrangements (CA) * * Only deviations > +/-.05 in standard deviation

25. Pan- European Network Core Group EUROFAMCARE 25 Means on need dimensions categorized in countries * * only deviations > +/-.05 in standard deviation