1. Core Group Pan- European Network “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 Uni HH-IMS-CKo 1

2. Core Group Pan- European Network “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 Uni HH-IMS-CKo 2 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 The V th Framework Programme: Quality of Life and Management of Living Resources Key Action 6: The Ageing Population and Disabilities 6.5: Health and Social Care Services to older People

3. Core Group Pan- European Network “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 Uni HH-IMS-CKo 3 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 The V th Framework Programme: Quality of Life and Management of Living Resources Key Action 6: The Ageing Population and Disabilities 6.5: Health and Social Care Services to older People

4. Core Group Pan- European Network “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 Uni HH-IMS-CKo 4 Objectives  In all European countries increasing old- age is combined with more frequent and longer phases of being in need of care.  The majority of all families in Europe will have to cope with the situation, that their ageing relatives will become dependent.  In these and future times this often means long-term-care for several years.

5. Core Group Pan- European Network “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 Uni HH-IMS-CKo 5 Objectives  A European policy aim is to enable elderly people to remain at home as long as possible…  but this is only feasible with the support of family carers as there is no realistic chance to cover these duties with other informal carers and professional carers only.  Although family carers are about 80 % of all care- givers in total, the majority of family carers is neither trained in nursing nor has developed sufficient coping skills.

6. Core Group Pan- European Network “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 Uni HH-IMS-CKo 6 Objectives  The family carers of today are at risk of becoming those in need of care tomorrow.  The need for European research in that field is evident – from an individual as well as from a societal perspective.

7. Core Group Pan- European Network “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 Uni HH-IMS-CKo 7 The Framework of E U R O F A M C A R E Partnership, Network

8. Core Group Pan- European Network “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 Uni HH-IMS-CKo 8 WHO Europe Copenhagen University of Hamburg Italian National Research Centre on Ageing INRCA Ancona National School for Public Health SEXTANT Athens University of Bremen University of Sheffield The Medical Academy of Bialystok & University of Gdansk Linköping University & Socialstyrensen Stockholm

9. Core Group Pan- European Network “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 Uni HH-IMS-CKo 9 RT 7 RT 4 RT 3 RT 1 RT 5 RT 6 Sheffield (UK) (CR) 7 Sheffield (UK) (CR) 7 Co-ordination Centre Hamburg (Germany) Ancona (I) (CR) 4 Ancona (I) (CR) 4 Athens (EL) (CR) 3 Athens (EL) (CR) 3 Hamburg (D) (CO) 1 Hamburg (D) (CO) 1 Bialystok (PL) (CR) 5 Bialystok (PL) (CR) 5 Linköping (S) (CR) 6 Linköping (S) (CR) 6 WHO EURO (CR) 8 Bremen (D) (AC) 2 Bremen (D) (AC) 2 RT 2 Pan- European Group B DK E F IRL (L) NL A P FIN (BG) MT SI (CZ) (HU) CH NO Further National Background Reports Pan- European Group B DK E F IRL (L) NL A P FIN (BG) MT SI (CZ) (HU) CH NO Further National Background Reports NAG 4 NAG 3 NAG 1 NAG 5 NAG 6 NAG 7 IAB International Advisory Board IAB International Advisory Board NAG:National Advisory Group CO: Co-ordinator CR: Principal Contractor AC: Assistant Contractor RT: Research Team Pan-European Group CONSORTIUMCONSORTIUM CONSORTIUMCONSORTIUM Partnership

10. Core Group Pan- European Network “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 Uni HH-IMS-CKo 10 The Framework of E U R O F A M C A R E Research Design

11. Core Group Pan- European Network “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 Uni HH-IMS-CKo 11 Aim  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 policies towards a partnership approach between family carers, professional providers and cared-for.

12. Core Group Pan- European Network “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 Uni HH-IMS-CKo 12 Time-Frame 1-3 4-6 7-9 10-12 13-15 16-18 19-21 22-24 25-27 28-30 31-33 34-36 1-34-67-910-1213-1516-1819-2122-2425-2728-3031-3334-36 200320042005 Meetings & Conferences Deliverables STEP for NASUR Joint Family Care Assessment Milestones European Conference Preparation Meeting European Carers‘ Day

13. Core Group Pan- European Network “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 Uni HH-IMS-CKo 13 STEP for NASUR Standard Evaluation Protocol for the National Surveys

14. Core Group Pan- European Network “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 Uni HH-IMS-CKo 14 Standard Evaluation Protocol Guideline for all Partners how to conduct the studies / research work

15. Core Group Pan- European Network “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 Uni HH-IMS-CKo 15 National Surveys In-depth studies in the six core countries: Up to 1,000 families will be visited at home and interviewed face to face using a Joint Family Care Assessment Data will be analysed on a national and European level

16. Core Group Pan- European Network “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 Uni HH-IMS-CKo 16 Joint Family Care Assessment Compilation of instruments to assess carers‘ and their dependent family members‘ Quality of Life in relation to the - (non ‑ )existence, - (non-)familiarity, - (non ‑ )availability, - (non ‑ )use and - (non-)acceptability of supporting services

17. Core Group Pan- European Network “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 Uni HH-IMS-CKo 17 Time-Frame 1-3 4-6 7-9 10-12 13-15 16-18 19-21 22-24 25-27 28-30 31-33 34-36 Meetings & Conferences Assessment Training Manual Joint Family Care Assessment Standardised Evaluation Protocol STEP-NASUR National Data Sets European Data Base Deliverables 1-34-67-910-1213-1516-1819-2122-2425-2728-3031-3334-36 STEP for NASUR Joint Family Care Assessment Data Analysis Milestones 1 End of NASUR Preparation and Pilot European Conference Preparation Meeting Data Collection Data Entry Pilot Meeting European Carers‘ Day 3 End of Data Collection Documentation of Types of Services Interviewer Training 200320042005

18. Core Group Pan- European Network “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 Uni HH-IMS-CKo 18 Data Analysis  the differential of existing services on offer and the knowledge about services and their availability,  the use and non-use of such services, especially the reasons behind,  experience with and assessment of such services with respect to effectiveness and efficiency,  claimed needs for support resulting from the individual family care situation, which beside others may show a lack of specific services,  specific types of family care situations and their relation to specific services, respectively the lack of services.

19. Core Group Pan- European Network “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 Uni HH-IMS-CKo 19 Time-Frame 1-3 4-6 7-9 10-12 13-15 16-18 19-21 22-24 25-27 28-30 31-33 34-36 Meetings & Conferences Assessment Training Manual Joint Family Care Assessment Standardised Evaluation Protocol STEP-NASUR National Data Sets European Data Base Deliverables 1-34-67-910-1213-1516-1819-2122-2425-2728-3031-3334-36 STEP for NASUR Joint Family Care Assessment Data Analysis Milestones 1 End of NASUR Preparation and Pilot 5 End of National Surveys European Conference Preparation Meeting National Survey Reports Trans-European Surveys Report STEP for NABARE Data Collection Data Entry Pilot Meeting European Carers‘ Day 3 End of Data Collection Documentation of Types of Services Interviewer Training 200320042005

20. Core Group Pan- European Network “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 Uni HH-IMS-CKo 20 STEP for NABARE Standard Evaluation Protocol for the National Background Reports

21. Core Group Pan- European Network “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 Uni HH-IMS-CKo 21 National Background Reports The NABARE will contain the current information about the country specific situation of family carers’ - (non ‑ )support, - (non ‑ )relief and - (non ‑ )expertise in the years 2003/2004.

22. Core Group Pan- European Network “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 Uni HH-IMS-CKo 22 Time-Frame 1-3 4-6 7-9 10-12 13-15 16-18 19-21 22-24 25-27 28-30 31-33 34-36 Meetings & Conferences Assessment Training Manual National Background Reports NABAREs Joint Family Care Assessment Standardised Evaluation Protocols: STEP-NASUR STEP-NABARE National Data Sets European Data Base Deliverables 1-34-67-910-1213-1516-1819-2122-2425-2728-3031-3334-36 STEP for NASUR Joint Family Care Assessment Data Analysis Pilot Milestones 1 End of NASUR Preparation and Pilot 2 Finishing NABAREs 5 End of National Surveys PEUBARE European Conference Preparation Meeting National Survey Reports trans-European Surveys Report STEP for NABARE Data Collection Data Entry Pilot Meeting European Carers‘ Day Pan-European NABAREs 3 End of Data Collection Documentation of Types of Services Interviewer Training 200320042005

23. Core Group Pan- European Network “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 Uni HH-IMS-CKo 23 Pan-European Background Report The PEUBARE will contain the European situation of family carers’ - (non ‑ )support, - (non ‑ )relief and - (non ‑ )expertise in the years 2003/2004 with respect for the variety of the different social-, health- and welfare systems.

24. Core Group Pan- European Network “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 Uni HH-IMS-CKo 24 Time-Frame 1-3 4-6 7-9 10-12 13-15 16-18 19-21 22-24 25-27 28-30 31-33 34-36 Meetings & Conferences Assessment Training Manual National Background Reports NABAREs Joint Family Care Assessment Standardised Evaluation Protocols: STEP-NASUR STEP-NABARE Pan-European Background Report National Data Sets European Data Base Deliverables 1-34-67-910-1213-1516-1819-2122-2425-2728-3031-3334-36 STEP for NASUR Joint Family Care Assessment Data Analysis Pilot Milestones 1 End of NASUR Preparation and Pilot 2 Finishing NABAREs 4 Finishing PEUBARE 5 End of National Surveys PEUBARE European Conference Preparation Meeting National Survey Reports Trans-European Surveys Report STEP for NABARE Data Collection Data Entry Pilot Meeting European Carers‘ Day Pan-European NABAREs 3 End of Data Collection Documentation of Types of Services Interviewer Training European Policy Dimension 200320042005

25. Core Group Pan- European Network “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 Uni HH-IMS-CKo 25 European Policy Dimension  feeding the Partners with European level background knowledge  conducting interviews with European decision makers to gather their views about strengths, weaknesses and opportunities in their responsibilities to support family carers

26. Core Group Pan- European Network “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 Uni HH-IMS-CKo 26 Time-Frame 1-3 4-6 7-9 10-12 13-15 16-18 19-21 22-24 25-27 28-30 31-33 34-36 Meetings & Conferences Assessment Training Manual National Background Reports NABAREs Joint Family Care Assessment Standardised Evaluation Protocols: STEP-NASUR STEP-NABARE Pan-European Background Report National Data Sets European Data Base Deliverables 1-34-67-910-1213-1516-1819-2122-2425-2728-3031-3334-36 STEP for NASUR Joint Family Care Assessment Data Analysis Pilot Milestones 1 End of NASUR Preparation and Pilot 2 Finishing NABAREs 4 Finishing PEUBARE 5 End of National Surveys PEUBARE European Conference Preparation Meeting National Survey Reports Trans-European Surveys Report STEP for NABARE Data Collection Data Entry Pilot Meeting European Carers‘ Day Pan-European NABAREs 3 End of Data Collection Documentation of Types of Services Interviewer Training European Policy Dimension 200320042005 ECO Socio-economic Evaluation Report on European Policy Dimension

27. Core Group Pan- European Network “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 Uni HH-IMS-CKo 27 Socio-economic Evaluation A socio-economic evaluation on the basis of the National Surveys and the pan-European background information will calculate the economic consequences from perceived quality of life to European-wide politico-economic implications

28. Core Group Pan- European Network “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 Uni HH-IMS-CKo 28 Time-Frame 1-3 4-6 7-9 10-12 13-15 16-18 19-21 22-24 25-27 28-30 31-33 34-36 Meetings & Conferences Assessment Training Manual National Background Reports NABAREs Joint Family Care Assessment Standardised Evaluation Protocols: STEP-NASUR STEP-NABARE Pan-European Background Report National Data Sets European Data Base Deliverables 1-34-67-910-1213-1516-1819-2122-2425-2728-3031-3334-36 STEP for NASUR Joint Family Care Assessment Data Analysis Pilot Milestones 1 End of NASUR Preparation and Pilot 2 Finishing NABAREs 4 Finishing PEUBARE 5 End of National Surveys PEUBARE European Conference Preparation Meeting National Survey Reports Trans-European Surveys Report STEP for NABARE Data Collection Data Entry Pilot Meeting European Carers‘ Day Pan-European NABAREs 3 End of Data Collection Documentation of Types of Services Interviewer Training European Policy Dimension 200320042005 ECO Socio-economic Evaluation Report on European Policy Dimension REACT 6 End of Socio- economic Evaluation Socio- economic Report

29. Core Group Pan- European Network “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 Uni HH-IMS-CKo 29 Research Action - REACT  to contact a network of service providers and privileged witnesses to discuss study results  to understand better the gap between perceived needs and “Political Reality”  to contribute to an active change of attitudes / concepts / behaviour  to provide a manual of innovations, good practice etc.

30. Core Group Pan- European Network “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 Uni HH-IMS-CKo 30 Time-Frame 1-3 4-6 7-9 10-12 13-15 16-18 19-21 22-24 25-27 28-30 31-33 34-36 Meetings & Conferences Assessment Training Manual National Background Reports NABAREs Joint Family Care Assessment Standardised Evaluation Protocols: STEP-NASUR STEP-NABARE Pan-European Background Report National Data Sets European Data Base Deliverables 1-34-67-910-1213-1516-1819-2122-2425-2728-3031-3334-36 STEP for NASUR Joint Family Care Assessment Data Analysis Pilot Milestones 1 End of NASUR Preparation and Pilot 2 Finishing NABAREs 4 Finishing PEUBARE 5 End of National Surveys PEUBARE European Conference Preparation Meeting National Survey Reports Trans-European Surveys Report STEP for NABARE Data Collection Data Entry Pilot Meeting European Carers‘ Day Pan-European NABAREs 3 End of Data Collection Documentation of Types of Services Interviewer Training European Policy Dimension 200320042005 ECO Socio-economic Evaluation Report on European Policy Dimension REACT Dissemination Carer & Provider Manuals Final Conference and European Carers’ Day 8 Typology of Family Care Situations End of REACT 7 European Carers‘ Charta 6 End of Socio- economic Evaluation Socio- economic Report

31. Core Group Pan- European Network “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 Uni HH-IMS-CKo 31 Connecting European Policies with European Families Euro-Political Analysis Pan-European Group National Background Reports NABAREs (Secondary Analyses) Trans-European Group National In-Depth Surveys NASURs WHO-Euro Euro-Political Background Report socio-economical evaluation ECO micro-level macro-level In-Depth Analysis European Policies European Families

32. Core Group Pan- European Network “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 Uni HH-IMS-CKo 32 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 The V th Framework Programme: Quality of Life and Management of Living Resources Key Action 6: The Ageing Population and Disabilities 6.5: Health and Social Care Services to older People