Long- Term Care in Europe

Transcription

1 Long- Term Care in Europe The project Health systems and long-term care for older people in Europe. Modelling the INTERfaces and LINKS between prevention and rehabilitation, quality and informal care was funded by the European Commission under the Seventh Framework Programme (Grant agreement no )

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3 Long- Term Care in Europe Improving Policy and Practice Edited by Kai Leichsenring European Centre for Social Welfare Policy and Research, Austria Jenny Billings University of Kent, UK and Henk Nies Vilans, The Netherlands

4 Editorial matter and selection Kai Leichsenring, Jenny Billings and Henk Nies 2013 Individual chapters respective authors 2013 Softcover reprint of the hardcover 1st edition All rights reserved. No reproduction, copy or transmission of this publication may be made without written permission. No portion of this publication may be reproduced, copied or transmitted save with written permission or in accordance with the provisions of the Copyright, Designs and Patents Act 1988, or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency, Saffron House, 6 10 Kirby Street, London EC1N 8TS. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages. The authors have asserted their rights to be identified as the authors of this work in accordance with the Copyright, Designs and Patents Act First published 2013 by PALGRAVE MACMILLAN Palgrave Macmillan in the UK is an imprint of Macmillan Publishers Limited, registered in England, company number , of Houndmills, Basingstoke, Hampshire RG21 6XS. Palgrave Macmillan in the US is a division of St Martin s Press LLC, 175 Fifth Avenue, New York, NY Palgrave Macmillan is the global academic imprint of the above companies and has companies and representatives throughout the world. Palgrave and Macmillan are registered trademarks in the United States, the United Kingdom, Europe and other countries. ISBN ISBN (ebook) DOI / This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources. Logging, pulping and manufacturing processes are expected to conform to the environmental regulations of the country of origin. A catalogue record for this book is available from the British Library. A catalog record for this book is available from the Library of Congress

5 Contents List of Figures, Tables and Boxes Preface Notes on Contributors Acknowledgements vii xiii xiv xviii Part I Introduction 1 Addressing Long- Term Care as a System Objectives and Methods of Study 3 Jenny Billings, Kai Leichsenring and Lis Wagner 2 The Emerging Identity of Long- Term Care Systems in Europe 19 Henk Nies, Kai Leichsenring and Sabina Mak Part II Overcoming the Health Social Care Divide and the Formal Informal Care Divide 3 User Perspectives in Long- Term Care and the Role of Informal Carers 45 Michel Naiditch, Judy Triantafillou, Patrizia Di Santo, Stephanie Carretero and Elisabeth Hirsch Durrett 4 Joint Working between Health and Social Care 81 Kerry Allen, Jon Glasby and Ricardo Rodrigues 5 Converging Methods to Link Social and Health Care Systems and Informal Care Confronting Nordic and Mediterranean Approaches 100 Jorge Garcés, Francisco Ródenas and Teija Hammar 6 Integration as Boundary Redefinition Process 118 Pierre Gobet and Thomas Emilsson Part III Innovative Cases in the Construction of Long- Term Care in Europe 7 Prevention and Rehabilitation within Long- Term Care: Applying a Comprehensive Perspective 143 Susanne Kümpers, Georg Ruppe, Lis Wagner and Anja Dieterich 8 The Quest for Quality in Long- Term Care 167 Kai Leichsenring, Henk Nies and Roelf van der Veen v

6 vi Contents 9 Making Sense of Differences the Mixed Economy of Funding and Delivering Long- Term Care 191 Ricardo Rodrigues and Henk Nies 10 The Care Gap and Migrant Carers 213 Rastislav Bednárik, Patrizia Di Santo and Kai Leichsenring 11 Volunteering in Long- Term Care for Older People: The Potential for Social Innovation 232 Kvetoslava Repková, Karin Stiehr and Barbara Weigl 12 The Role of Information Technology in Long- Term Care for Older People 252 Jenny Billings, Stephanie Carretero, Georgios Kagialaris, Tasos Mastroyiannakis and Satu Meriläinen-Porras 13 Palliative Care within Long- Term Care Systems: Beyond End of Life? 278 Laura Holdsworth and Georg Ruppe Part IV Conclusions 14 Improving the Evidence Base 299 Jenny Billings 15 Improving Policy and Practice in Long- Term Care 325 Kai Leichsenring, Jenny Billings and Henk Nies Appendices Appendix A: The INTERLINKS Framework for Long- Term Care Themes, Sub- Themes and Key Issues 337 Appendix B: The INTERLINKS Template to Describe and Analyse Practice Examples 343 Bibliography 345 Index 382

7 List of Figures, Tables and Boxes Figures 1.1 Positioning integrated long- term care between health and social care systems The spiral configuration of the INTERLINKS project design The welfare diamond in long- term care Individual and societal coverage of needs by long- term care systems (selected countries) Percentage of the labour force employed in the care sector The mixed horizontal and vertical governance of LTC 205 Tables 2.1 A typology of European long- term care regimes Specific measures for the support of informal carers Non- specific measures for the support of informal carers and older people Analytical scheme for classifying measures related to informal carers support policies and the country in which the example is implemented Selected examples of case management practices in Europe Population, health and social care structure, cost and funding in Spain and Finland Comparisons of SSHM and PALKO models Study designs and effects and cost- effectiveness of the SSHM and PALKO models Characteristics of isolated vs system- related P&R measures Public expenditure on long- term care and share of beneficiaries in the old- age population for selected countries most recent available data Rules governing co- payments in institutional care Private expenditure on long- term care in selected countries latest available year 200 vii

8 viii List of Figures, Tables and Boxes 9.4 Proportion of people (65 ) with care needs receiving formal and informal care most recent data ( ) The mixed economy of formal care provision Overview of main governance mechanisms used Push factors for migration from Slovakia and number of Slovak workforce abroad (2010) Volunteering between formal and family care Examples of volunteering activities in LTC Criteria to describe effects 306 Boxes 1.1 The INTERLINKS Framework for long- term care (excerpt) LOC voice in healthcare My Home Life (United Kingdom) The European Charter of the Rights and Responsibilities of Older People in need of LTC and Assistance (2010) The Big Care Debate public engagement in LTC funding (England) Bridging the gap between nursing home and community care (Denmark) Case managers for people with dementia and their informal caregivers (The Netherlands) ROSA A network for employment and care services to promote the regulation of undeclared work and to improve the quality of care work (Italy) The E- Qalin quality management system (Austria, Germany, Italy, Luxembourg, Slovenia) The values of community nursing (The Netherlands) Single Assessment Process (United Kingdom) Case managers for people with dementia and their informal caregivers (The Netherlands) Local governance to bridge institutional and professional gaps: Dementia guidelines and informal carers (Sweden) Integrated access point for older people (Italy) Using electronic communication between hospital and municipality: SAM:BO (Denmark) 56

9 List of Figures, Tables and Boxes ix 3.6 Informal carers rights to an assessment of their own needs (United Kingdom) We Care Representative body of informal carers, relatives and friends (Germany) Elderly Care Vocational Skill Building and Certification (ECVC) (Greece) Respite care platform (France) Direct payments for informal carers (United Kingdom) Kompass Case management of lower socio- economic status patients (Switzerland) Coordinating Care for Older People (COPA): Teamwork integrating health and social care professionals in community care (France) Activating daily life (ADaL) programme with technology solutions (Finland) Tax- based comprehensive LTC allowance (Austria) Improvement of discharge planning through formal collaboration between hospital and home care organisation (Switzerland) E- health unit (Greece) Improving the assessment of people with care needs The RAI system (Spain) Legal basis for older people s prevention visits (Denmark) Charter of rights for people in need of long- term care and assistance (Germany) Alzheimer Café (The Netherlands) Neighbourhood solidarity (Switzerland) Municipal LTC obligations to support informal carers (Sweden) Respite care platform: Organising a range of respite services in the community (France) Care Leave Act (Germany) Care Companions (Germany) RAI- benchmarking: An instrument for leadership and development (Finland) Integrated access point for older people (Italy) 131

10 x List of Figures, Tables and Boxes 6.10 Living comfortably in Menterwolde : Integration of health and social services in the local community for people who need care (The Netherlands) As long as possible in one s own life : Home- rehabilitation (Denmark) ICT solutions and new welfare technology facilitating integration (Finland) Hospital at home for older people (France) Bridging the gap between nursing home and community care: The Skævinge Project (Denmark) Better Homes Active Lives Extra- care housing scheme in Kent (United Kingdom) Definitions of prevention and rehabilitation A definition of Integrated Care The hospital comes to your home Outreach Geriatric Remobilisation (Austria) Kompass Case management for patients of lower socio- economic status experiencing complex somatic and psychosocial problems (Switzerland) Buurtzorg Care in the neighbourhood: better home care at reduced cost (The Netherlands) Geriatric Network (GeriNet) Brandenburg (Germany) Bridging the gap between nursing home and community care: The Skaevinge project and prevention of hospitalisation (Denmark) Living Comfortably in Menterwolde: integration of health and social services in the local community for people who need care (The Netherlands) Social work with older people Frequent home visits for socially isolated older people/people with low levels of care needs (Germany) Archdiocese of Athens Social Services Department Christian Solidarity (Greece) Quartiers Solidaires Neighbourhood Solidarity (Switzerland) Meeting centres for people with dementia and their informal caregiver(s) (The Netherlands) Quality management of integrated stroke services (The Netherlands) 183

11 List of Figures, Tables and Boxes xi 8.2 Geriatric Network and Geriatric Academy Brandenburg (Germany) RAI benchmarking: An instrument for leadership and development (Finland) Outcome indicators for rating the quality of care provided by care homes for older people (Germany) The E- Qalin Quality Management System (Austria, Germany, Luxembourg, Slovenia) An attempt to bridge governance divides: Guidelines for Dementia Care (Sweden) ROSA A network to promote formal employment of migrant care workers (Italy) Public support of 24-hour assistance in Austria Care at home by integrating formal and informal care Casa Amica Notte e Giorno (Italy) Key features of Slovak migrant carers working in Austria Help- at- Home services (Greece) Equinoxe (France) Network carecompany (Germany) Social work with older people Frequent home visits for socially isolated older people with lower levels of care needs (Germany) IT solutions in LTC management: The E- Health Unit (Greece) IT solutions in LTC management: AMICA (Spain) ADaL: Activating daily life programme with technology solutions (Finland) IT applications at the interfaces between health and social care professionals: The Smart Call Technology (Slovakia) IT solutions and new health technology facilitating integration in home care (Finland) IT applications at the interfaces between formal and informal care: Geoloc (France) IT solutions and new welfare technology facilitating integration for people with dementia: ISISEMD (Finland) IT applications at the interfaces between formal and informal care: Equinoxe (France) WHO s definition of palliative care 279

12 xii List of Figures, Tables and Boxes 13.2 WHO s definition of long- term care Health promoting palliative care German Charter of Rights for People in Need of Long- term Care and Assistance Protected hospital discharge and palliative care teams (Italy) Mobile palliative teams (Austria) Hospital at home for older people (France) Care Leave Act (Germany) Hospice and palliative care in nursing homes (Austria) The PALKOmodel (Finland) POPPS: The Partnership for Older People Projects (United Kingdom) Neighbourhood Solidarity (Switzerland) Meeting Centres for people with dementia (The Netherlands) Care at home (Italy) Equinoxe (France) Outcome indicators (Germany) E- Qalin (Austria, Germany, Luxembourg, Slovenia) Integrated care programmes: quality management of stroke- related services (The Netherlands) Needs assessment model (Slovak Republic) Direct payments (United Kingdom) 318

13 Preface The impetus for this book stemmed from a three- year project titled INTERLINKS Health systems and long- term care for older people. Modelling INTERfaces and LINKS between prevention and rehabilitation, quality assurance and informal care. This project was funded under the European Commission s Seventh Framework Programme. It was carried out by 15 research organisations from 13 European countries: European Centre for Social Welfare Policy and Research, Vienna (Austria) Ecole d études sociales et pédagogiques, Lausanne (Switzerland) University of Southern Denmark (Denmark) Institut de Recherche et Documentation en Economie de la Santé IRDES, Paris (France) National Institute for Health and Welfare THL, Helsinki (Finland) Institut für Soziale Infrastruktur ISIS, Frankfurt a.m. (Germany) Wissenschaftszentrum Berlin für Sozialforschung WZB, Berlin (Germany) CMT Prooptiki ltd., Athens (Greece) University of Valencia ERI Polibienestar (Spain) Studio Come S.r.l., Rome (Italy) Vilans Centre of Expertise for Long-term Care, Utrecht (The Netherlands) Institute for Labour and Family Research, Bratislava (Slovak Republic) Forum for Knowledge and Common Development, Stockholm County Council (Sweden) University of Kent Centre for Health Services Studies, Canterbury (United Kingdom) University of Birmingham HSMC (United Kingdom) The challenges of long- term care in ageing societies are well documented. The purpose of this book is to draw together significant themes from the INTERLINKS project and couple them with related evidence and thinking. This overview should indicate ways forward to construct new approaches and to improve policy and practice in long-term care. xiii

14 Notes on Contributors Kerry Allen (UK) is a Research Fellow at the Health Services Management Centre, University of Birmingham. With a background in the sociology of health and illness her research focuses on policy and governance issues in chronic illness and prevention. Her publications include The Billion Dollar Question: Embedding Prevention in Older People s Services Ten High- Impact Changes (with J. Glasby). Rastislav Bednárik (Slovakia) is Senior Researcher at the Institute for Labour and Family Research, Bratislava. He has coordinated national projects and participated in international research projects on social protection, the labour market and social care. He is a national correspondent of the European Commission s MISSOC initiative and has recently published The state of social protection in Slovakia. Jenny Billings (UK) is a Reader in Applied Health Research in the Centre for Health Service Studies at the University of Kent. Her strength lies in methodological design and she has an interest in health and social care improvement of older people. She has been involved in several EU projects resulting in publications such as Integrating Health and Social Care Services for Older People (ed. with K. Leichsenring). Stephanie Carretero (Spain) worked as a Researcher at the Polibienestar Research Institute at the University of Valencia and is now a Scientific Officer at JRC-IPTS in the European Commission in Seville. She has been involved in European research on social innovation for long-term care since 2001 and has published in a number of international journals for geriatric psychiatry and gerontology. Patrizia Di Santo (Italy) is a sociologist and Managing Director of Studio Come Srl. in Rome, where she is also Professor of Equal Opportunities at Lumsa University (Master in Social Services) and La Sapienza University (Master in Communication and Management of Human Resources). She has conducted numerous projects and published extensively on innovation in local institutions, equal opportunities and organisational development, and integrated service networks. Anja Dieterich (Germany) is a Physician with a Masters degree in Public Health. She is a Health Policy Advisor at the Diakonie Bundesverband, the social welfare organisation of the Protestant Church in Germany, and previously worked as a researcher at the Social Science Research Centre in Berlin. xiv

15 Notes on Contributors xv She has conducted several cross-national research projects with a focus on integrated care for older people, resulting in a number of publications. Thomas Emilsson (Sweden) works as a Research Assistant at the Forum for Knowledge and Common Development in the Stockholm County Council. He is particularly knowledgeable in quality of care issues regarding vulnerable older people and their informal carers, testing and evaluating new instruments with qualitative methodologies. Jorge Garcés (Spain) is Professor at the University of Valencia, University of Innsbruck and Erasmus University of Rotterdam. He is an expert in sustainability and transformations in European public policies and Director of the Polibienestar Research Institute. Jon Glasby (UK) is the Director of the Health Services Management Centre and Professor of Health and Social Care at the University of Birmingham. Editor of the Better Partnership Working series (Policy Press), his research interests include joint working between health and social care, community care and personalisation. Pierre Gobet (Switzerland) is a sociologist and a registered nurse. He specialises in health policy and health economics and has conducted research on managed care organisations, case management and on epistemological issues in nursing care and integrated long-term care. He is a Professor and Researcher at the Lausanne School of Social Work. Teija Hammar (Finland) has a D.Sc. in Health Economics and works as a Senior Researcher at the National Institute for Health and Welfare, Helsinki. She has been involved in many research and development projects in the area of health and social care, especially home care, resulting in publications such as The cost-effectiveness of integrated home care and discharge practice for home care clients (with P. Rissanen and M.-L. Perälä). Elisabeth Hirsch Durrett (Switzerland) was trained in Occupational Therapy and Sociology (London School of Economics). She specialised in Sociology of Health (Boston University) and in Gerontological Policy (Brandeis University). Active in health policy and gerontology, she is a Professor and researcher at the Lausanne School of Social Work. Laura Holdsworth (UK) is a Research Associate at the University of Kent. She has worked on a variety of projects within long-term care and palliative care, producing publications such as A retrospective analysis of preferred and actual place of death for hospice patients (with S. Fisher). Georgios Kagialaris (Greece) is a Public Health Nurse working at the Hellenic navy as an officer. He collaborates with CMT Prooptiki and has performed a number of research projects and clinical trials, focusing on older people.

16 xvi Notes on Contributors Susanne Kümpers (Germany) is Professor for Qualitative Health Research, Social Health Inequalities and Public Health Strategies at the University of Applied Sciences in Fulda. Before this she worked as a Senior Researcher at the Social Science Research Centre in Berlin and coordinated research projects on old age, integrated care, inequality and health. Kai Leichsenring (Austria) is Associate Senior Researcher at the European Centre for Social Welfare Policy and Research, Vienna. He has coordinated a range of EU research and development projects in the area of health and social care, resulting in publications such as Integrating Health and Social Care Services for Older People (ed. with J. Billings). Sabina Mak (The Netherlands) is a Project Manager for the programme Quality and Innovations in Elderly Care at Vilans, Centre of Expertise for Long-Term-Care, Utrecht. Her main focus is on optimising care for older people with dementia and on quality measurement in nursing homes, resulting in publications such as Measuring Progress: Indicators for care homes. Tasos Mastroyiannakis (Greece) is a member of CMT Prooptiki, Athens. He is a Health Economist and has participated in a range of EU research and development projects in the health sector and on social issues. Satu Meriläinen-Porras (Finland) works as a Researcher at the National Institute for Health and Welfare, Helsinki, Finland. She has participated in national and European research and development projects in the area of health and social care, in particular focusing on care for older people. Michel Naiditch (France) is a statistician, mathematician, medical doctor and public health expert and works as an Associate Researcher at IRDES (Research and Documentation Institute in Health Economy) in Paris. He has conducted research linked to home care, the assessment and implementation of health and social networks for chronic diseases, and the conditions for facilitating coordination and cooperation, resulting in a large range of publications. Henk Nies (The Netherlands) is CEO of Vilans, the Netherlands Centre of Expertise for Long-Term Care. He is Professor of Organisation and Policy Development in Long-term Care at the VU University Amsterdam. Throughout his career he has worked between the boundaries of policy, practice and research, publishing books, articles and blogs. Kvetoslava Repková (Slovakia) is Director of the Institute for Labour and Family Research in Bratislava. She has coordinated and collaborated in a number of national and international research projects focusing on disability and long-term care resulting in monographs such as Long-term care in the context of integrated social work. Georg Ruppe (Austria) is a medical doctor and holds a Masters degree in Medical Anthropology (University of Amsterdam). He worked as a Researcher

17 Notes on Contributors xvii at the European Centre for Social Welfare Policy and Research from 2008 to 2012 and is now Managing Director of the Austrian Interdisciplinary Platform on Ageing (ÖPIA). His research interests include interdependencies between the socio-cultural context and the organisation of health care services, and between medical intervention and quality of life in old age. Francisco Ródenas (Spain) is lecturer at the University of Valencia and Senior Researcher at the Polibienestar Research Institute. His main research topic is the sustainability, efficiency and quality of long-term care systems, resulting in publications such as Readings of the social sustainability theory (ed. with J. Garcés and S. Carretero). Ricardo Rodrigues (Austria) is a Research Fellow at the European Centre for Social Welfare Policy and Research, Vienna, where he has been conducting comparative research in the area of long-term care for older people. He has participated in a number of European funded projects covering issues such as equity, expenditure on long-term care, care markets and user choice policies. Karin Stiehr (Germany) is an Associate Partner and Managing Director of ISIS, Institut für Soziale Infrastruktur, Frankfurt am Main. As a researcher, her work focuses on issues of care and volunteering. In these fields, she has coordinated numerous projects at European and national levels and is a regular consultant to the Governments of Hessen and North-Rhine-Westphalia. Judy Triantafillou (Greece) is a medical practitioner and member of the Administrative Council of the NGO 50plus Hellas, which collaborates with CMT Prooptiki. She has participated in a number of EU and national projects on health, services and informal care of older people, with relevant publications in these areas. Roelf van der Veen (The Netherlands) is Senior Programme Officer at Vilans, Centre of Expertise for Long-Term Care in Utrecht. He has managed a range of projects in the area of care for older people. He has most recently been involved in integrated dementia care as well as in innovation and improvement projects in the context of the Dutch national quality improvement programme Zorg voor Beter. Lis Wagner (Denmark) is Professor and research leader at the Research Unit of Nursing, University of Southern Denmark and former director of WHO EURO nursing and midwifery office. She has been involved in a wide international research network within gerontology resulting in publications describing long-term care in the Danish health care system since the 1980s. Barbara Weigl (Germany) is a gerontologist and worked as a researcher at the Social Science Research Centre Berlin until January She is now Lecturer for Nursing Sciences, Care Management and Gerontology at the Protestant University of Applied Sciences in Berlin.

18 Acknowledgements This book has uncounted mothers and fathers who lent their minds and bodies to conceive and accompany its progress and growth. Apart from the individual authors, we have to thank a large number of technical assistants, colleagues and other staff working in the 15 organisations that participated in the INTERLINKS project and contributed with their ideas and support to its success. We cannot thank native speakers in the INTERLINKS consortium enough for their linguistic editing skills and additional efforts provided to ensure that high standards of mutual understanding were achieved throughout; in particular, this refers to Jenny Billings and Laura Holdsworth (University of Kent), Kerry Allen (University of Birmingham), Judy Triantafillou (CMT Prooptiki), Elisabeth Hirsch Durrett (University of Applied Sciences Western Switzerland) and Lorna Campbell (University of Southern Denmark). In addition, we would like to thank all members of the 13 National Expert Panels who provided their knowledge, time and expertise. Their contributions as representatives of national stakeholder organisations, policy and research to identify practice examples and in validating the INTERLINKS Framework for long- term care were a most valuable resource. We are also indebted to the representatives of European stakeholder organisations who provided valuable feedback and support as a sounding board, namely AGE Platform, Alzheimer Europe, Centraal Planbureau (representing ANCIEN), EAHSA European Association of Homes and Services for the Ageing, E.D.E European Association for Directors of Residential Care Homes for the Elderly, the European Federation of Nurses Associations (EFN), the European Foundation for the Improvement of Living and Working Conditions, Eurocarers, the European Social Network (ESN), Eucomed, EURAG The European Federation of Older Persons (also Member of the European Social Platform), Homecare Europe (represented by the Caritas of the Archdiocese of Vienna and Familiehulp v.z.w.), the Federal Planning Bureau (representing ANCIEN), the International Association of Geriatrics and Gerontology (IAGG European Region), the Ministry of Health and Social Affairs, Division Social Services (during the Swedish EU Presidency), OECD, WHO Regional Office for Europe, EASPD, Health Forum Gastein, DG Employment, DG Research and the VU University Medical Center (representing SHELTER). Finally, we would like to thank the European Commission, Directorate General Research and its staff for facilitating INTERLINKS as a project, and xviii

19 Acknowledgements xix therefore also this book, through generous funding and continuous support during the project period. We hope that our results will be able to support the engagement of all these national and international stakeholders in improving long- term care all over Europe and beyond.