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Eurocarers, Dublin, Ireland, 6 May 2011 1 EUROCARERS 2011 6 May 2011, Dublin CAN Eurocarers, Dublin, Ireland, 6 May 2011 1 EUROCARERS 2011 6 May 2011, Dublin CAN INFORMATION AND COMMUNICATIONS TECHNOLOGIES (ICTs) SUPPORT CARERS? FACTS, OPPORTUNITIES AND CHALLENGES AHEAD James Stewart Clara Centeno Joint Research Centre (JRC) Institute for Prospective Technological Studies The European Commission’s Research-Based Policy Support Organisation

Institute for Prospective Technological Studies Eurocarers, Dublin, Ireland, 6 May 2011 2 IPTS: Part Institute for Prospective Technological Studies Eurocarers, Dublin, Ireland, 6 May 2011 2 IPTS: Part of Joint Research Centre of the EC: 7 Research Institutes across Europe Mission: “to provide customer-driven support to the EU policy-making process by developing science-based responses to policy challenges that have both a socio-economic as well as a scientific/technological dimension”

Policy and Research Eurocarers, Dublin, Ireland, 6 May 2011 Policy Challenges Future of Long Policy and Research Eurocarers, Dublin, Ireland, 6 May 2011 Policy Challenges Future of Long Term Care for the Elderly Provision of Health, Social Care, Social Welfare in the medium to long term in response to demographic, economic and social change ICTs for Social Inclusion Support the use and development of ICTs for participation in society, employment, etc; 3 Evidence on ICTs for LTC to help: Policy Makers Organisations with interests in and responsibilities towards (Informal) Carers, Dependents and Families Conference themes Balancing supply and demand for informal carers Combining care and work

ICTs in l. TC: a challenge to everyone Eurocarers, Dublin, Ireland, 6 May 2011 ICTs in l. TC: a challenge to everyone Eurocarers, Dublin, Ireland, 6 May 2011 4 How are ICTs changing the possibilities, costs and expectations of LTC ‘Macro’ Analysis for policy makers ‘Meso’ Organisations Responsibility for provision of LTC for the elderly, and allocation of finance (family, state, private, employers; gender) Recognition of care responsibilities in citizen’s lives Information Society: Investments and policy in ICT infrastructure and human capabilities On-the ground organisation of care and health service provision On-the ground organistion of employment and services Investment and Innovation in ICT-based solutions, human skills etc ‘Micro’ Carers in Everyday life Everyday caregiving and receiving experience and conditions Quality of life and Quality of care Local and individual use, benefits, problems and integration of ICTs in everyday life Dynamic picture at all levels, with different national inheritance and pathways, and challenges such as demographic and cultural change

Trends in Long Term Care (LTC) Eurocarers, Dublin, Ireland, 6 May 2011 5 Budget Trends in Long Term Care (LTC) Eurocarers, Dublin, Ireland, 6 May 2011 5 Budget constraints Life expectancy Changing family Structures Mobility Labor force Ageing Quality of care Demand for care Caregivers supply Proposed ways forward Women at work Difficult conditions of work/life Privatisation of care services Improved health of older people New-family care Independent Living Low-cost, motivated migrant care workers (Ambient) Assisted Living ‘Joined-up’ care services Robots Telecare New living arrangements Professionalistion of care etc assistants ICTs involved in many of these developments

ICT for LTC of the elderly Eurocarers, Dublin, Ireland, 6 May 2011 20 th ICT for LTC of the elderly Eurocarers, Dublin, Ireland, 6 May 2011 20 th century ICT: communication, broadcasting: Telephone, Radio, TV, music, alarms, disability specific devices Internet Age ICTs for 21 st century lives Personal ICTs – Internet access, PC, mobile, ipad, email, online community, social networking, on-demand media, provides entertainment, information, self-organisation IT for organisations and networks – IT systems to improve efficiency, organisation, provide information, training, coordination, transparency with staff and customers Assisted Living technologies: ‘smart, adapted devices and home’ provide help and safety those with physical and mental disability Telecare: allow state, 3 rd sector, volunteers and family to provide, organise and share care responsibilities; Telehealth/ ehealth improve health of older people and avoid dependence 6

ICTs in social inclusion and exclusion. Eurocarers, Dublin, Ireland, 6 May 2011 ICT use ICTs in social inclusion and exclusion. Eurocarers, Dublin, Ireland, 6 May 2011 ICT use has become a basic part of life and citizenship. Many benefits of use. §Communication §Information §Community/family §Access to employment §Commercial services (shopping, banking, services), §Learning/Training §Government services §Leisure and everyday life §Personalised/accessible/ interactive/mobile 7 Non-use of ICTs creates new obstacles to participation in society Barriers to use • Personal capabilities and motivation • Personal and community socio- economic barriers (cost, no workplace access, no local expertise etc) • Poor/irrelevant design of services and devices • Technical, Policy and Commercial barriers to supply/access General and Specific benefits for informal carers, but ICTs still not accessible to many carers Informal Carers and care assistants often fit profile of those who have none or low use of ICTs such as the internet due to following factors: low income; older age groups; lack of experience in labour market using ICTs; low educational attainment • No clear market or policies to support ICT for informal carers.

ICTs for carers: Evidence? Eurocarers, Dublin, Ireland, 6 May 2011 Why ICTs to support ICTs for carers: Evidence? Eurocarers, Dublin, Ireland, 6 May 2011 Why ICTs to support carers? What are the uses And benefits of ICTs for those in position of providing Informal care, and how these can be improved and made more widely available? 8 Anecdotal, local and initial evidence positive (10 years) Millions spent on development of technology-based systems – ‘social’ and skills dimensions often lost – carers not on agenda. Policy Makers need evidence of benefits to put/maintain ICT for carers on agenda, shape policy, support continued investment in training, Programmes, technologies and services.

2009 -2010 Research Eurocarers, Dublin, Ireland, 6 May 2011 § § Exploratory research due 2009 -2010 Research Eurocarers, Dublin, Ireland, 6 May 2011 § § Exploratory research due to scarcity of data Countries analyzed: UK/ England CIRCLE (Centre for International Research on Care, Labour and Equalities) University of Leeds, Prof. Sue Yeandle, Gary Fry Germany Association of Senior Citizens’ Organisations (BAGSO), Dr. Heidrun Mollenkopf Italy Istituto per la Ricerca Sociale (IRS), Sergio Pasquinelli Spain Consultores Euroamericanos Asociados (CEA) and Innnovation Institute for Citizen Welfare (i 2 BC) 1. Desk-based analysis of reports and statistics : LTC provision, organization 2. 3. and ICT-related policies & migrant labour in LTC sector Web searches and interviews with key informants : ICT-based initiatives and services for LTC at home Interviews with informal migrant caregivers about their knowledge and use of ICT (24 in IT, 12 in ES, 4 in DE) 9

IPTS Reports Eurocarers, Dublin, Ireland, 6 May 2011 10 • Kluzer et al. (2010). IPTS Reports Eurocarers, Dublin, Ireland, 6 May 2011 10 • Kluzer et al. (2010). Long-term Care Challenges in an Ageing Society: The Role of ICT and Migrants – Results from a study on England, Germany, Italy and Spain. http: //ipts. jrc. europa. eu/publications/pub. cfm? id=3299 • Redecker et al. (2010). The potential of ICT in supporting Domiciliary Care in Spain. • Yeandle & Fry ( 2010). The potential of ICT in supporting Domiciliary Care in England. http: //ipts. jrc. europa. eu/publications/pub. cfm? id=3019 • Mollenkopf et al. (2010). The potential of ICT in supporting Domiciliary Care in Germany. http: //ipts. jrc. europa. eu/publications/pub. cfm? id=3079 • Boccagni & Pasquinelli (2010). The Potential of ICT in supporting Immigrant Care Workers in Domiciliary Care in Italy. http: //ipts. jrc. europa. eu/publications/pub. cfm? id=3519

The needs of informal caregivers Eurocarers, Dublin, Ireland, 6 May 2011 11 Needs Critical The needs of informal caregivers Eurocarers, Dublin, Ireland, 6 May 2011 11 Needs Critical Conditions Work load & time schedule (often 24/7) Limited knowledge of LTC services Lack of information/coordination on care situation Limited experiences & skills Emotional stress & social isolation Home Improved working conditions; stress relieve Information Communication, coordination Training Social, emotional & peer support Healthcare Care professionals organisations Doctors & hospitals Care worker legal & political framework Health insurance Cared Person Carer Informal associations Caregiver Voluntary Social networks groups Informal Caregiver family Public authorities friends Vocational First aid training On the job qualification training

The opportunities offered by ICT Eurocarers, Dublin, Ireland, 6 May 2011 12 Critical Conditions The opportunities offered by ICT Eurocarers, Dublin, Ireland, 6 May 2011 12 Critical Conditions Needs Work load & time schedule (often 24/7) Limited knowledge of LTC services Lack of information/coordination on care situation Limited experiences & skills Emotional stress & social isolation Home Cared Person e. Health solutions, e. g. social alarms, telecare, assist. tech. Improved working conditions; stress relieve Information Communication, coordination Training Social, emotional & peer support Healthcare Care professionals organisations Doctors & hospitals Care worker legal & political framework Mobile phones, email, internet, GPS Online information, phone helplines Informal Caregiver Migrants: multilingual information, iconbased devices, translation services Health insurance Public authorities Carer Informal associations Voluntary Online social networks, Caregiver Social networks groups phones, skype, e-mail Online training, phone helplines, Vocational online courses & training guides First aid training family friends On the job qualification training

 ICTs to help carers Eurocarers, Dublin, Ireland, 6 May 2011 13 Online training, ICTs to help carers Eurocarers, Dublin, Ireland, 6 May 2011 13 Online training, assessment Web information TV-based Phone support Information and Learning ICTs for: Tools that give access to information and training about caregiving, health and care issues for the dependent older persons, information and training about coping with caring; training for life - language, other work skills, accreditation of skills etc; Independent Living for older people Technology systems to allow elderly dependents to stay at home without continual formal or informal care support, thus relieving pressure on care-giver. It may allow caregiver to leave recipient alone, or help them in caregiving. Care Coordination Smart homes AAL Telecare Ehealth Internet Personal support and social integration These provide a means of social, emotional & peer support, leisure, relief from isolation and chances for participation in work, civil society etc. Telework Internet for social networking, shopping, government services Organisation IT etc Social Networking over internet Tools for coordinating formal sector and informal and family employed carers. Allows organisation of respite, sharing information on recipient's and carers needs etc. Phone-based systems

Carers Direct Helpline (UK) Eurocarers, Dublin, Ireland, 6 May 2011 14 Phone Helpline (+ Carers Direct Helpline (UK) Eurocarers, Dublin, Ireland, 6 May 2011 14 Phone Helpline (+ e-mail & mail) ü“Language Line”, a conferencing facility for instant translation by a trained interpreter. ü Text Relay/Typetalk service for deaf, deafblind, hard of hearing and speech-impaired. Support for Carers Quality of Life Support for Family-employed migrant care-givers Facilitating ‘Participation’ in the economy and society Support for Quality of care

Online Training & Courses (UK) Eurocarers, Dublin, Ireland, 6 May 2011 Support for Quality Online Training & Courses (UK) Eurocarers, Dublin, Ireland, 6 May 2011 Support for Quality of care 15 Facilitating ‘Participation’ in the economy and society Support for Quality of care Caring with Confidence National initiative seeking to provide training to 10. 000 carers over 3 years → Local group sessions → Workbooks for self-study → Online study sessions → Content/courses for BME carers City & Guilds – Learning for Living Online Learning Programme for carers: (1) Learning resource (2) nationally recognised (level 2) qualification: ‘Certificate in Personal Development & Learning for Unpaid Carers’ since 2004, around 700 participants

Cuidadoras en Red Eurocarers, Dublin, Ireland, 6 May 2011 16 Social Network for Carers Cuidadoras en Red Eurocarers, Dublin, Ireland, 6 May 2011 16 Social Network for Carers → since Nov 2008; connected to Carers of Pizarra (Malaga) → 162 users; 13 groups (09/2010) → Most frequent activities: Messaging, (micro)blogging, video sharing Support for Family-employed migrant care-givers Support for Carers Quality of Life Support for Quality of care Facilitating ‘Participation’ in the economy and society Preliminary findings (12/2009) → 100% gained or improved basic digital skills → 43% have gained more advanced ICT skills → social relations between carers and with younger family members improved

Opportunities and barriers for ICT in support of informal caregivers Eurocarers, Dublin, Ireland, 6 Opportunities and barriers for ICT in support of informal caregivers Eurocarers, Dublin, Ireland, 6 May 2011 17 Barriers Facilitate ‘Participation’ in the economy and society Support Family-employed migrant care-givers Lack of awareness ICT access and skills Privacy/security fears Users of ICT Support Carers’ Quality of Life Fragmentation Unclear responsibilities Lack of coordination Carers’ needs overlooked ICT access restrictions at work Lack of adapted content Language barrier Residence status -> barrier/incentive migrant specific Support Quality of Care Lack of knowledge & awareness ICT in LTC policies Support dependent older people LTC Organis tions Opportunities to:

Potential Policy Options Eurocarers, Dublin, Ireland, 6 May 2011 ICT in LTC policies Policy Potential Policy Options Eurocarers, Dublin, Ireland, 6 May 2011 ICT in LTC policies Policy makers need for knowledge evidence and analysis 18 Awareness raising: - carers’ needs - ICT opportunities - ICT impact Integration of ICT in LTC policy and LTC in ICT policy ICT in LTC organistion Care organisation needs Employer needs Suppliers Research policy: Caregivers in design of ICT for LTC Awareness raising: -ICT opportunities - ICT impact Organisational implications Resources and skilling Users of ICT Carer awareness Access and skills Privacy/security fears Digital inclusion measures (e. g. training): targeted and focused Privacy & trust-building solutions

Need for more evidence Eurocarers, Dublin, Ireland, 6 May 2011 We need more, and Need for more evidence Eurocarers, Dublin, Ireland, 6 May 2011 We need more, and better evidence to support policy decision making 19 Impact on individual carers and dependents Impact if widely available and used Impact on Quality of Care Cost based evidence Potential and requirements for transferability and scaling Potential for meeting Policy Challenges

New study: 2011 CARICT Eurocarers, Dublin, Ireland, 6 May 2011 20 Systematic and scientific New study: 2011 CARICT Eurocarers, Dublin, Ireland, 6 May 2011 20 Systematic and scientific evidence collection to inform policy Impact assessment of initiatives to support informal carers: family and non-professional assistants (often migrants) – putting numbers on stories Policy Questions “ICT-based solutions for caregivers: assessing their impact on the sustainability of long-term care in an ageing Europe “ Can ICTs help support the creation of sufficient motivated and skilled informal carers? Can ICT-enabled services improve the quality of care, quality of life of caregivers, and effectiveness and efficiency of care given? CARICT

Consortium partners: Eurocarers, Dublin, Ireland, 6 May 2011 Funders JRC-IPTS and DG INFSO Principal Consortium partners: Eurocarers, Dublin, Ireland, 6 May 2011 Funders JRC-IPTS and DG INFSO Principal Contractors: European Centre for Social Welfare Policy and Research in Vienna CIRCLE (Centre for International Research on Care, Labour and Equalities) - University of Leeds (England, UK) INRCA (National Institute of Health and Science on Aging), Italy Institute of Sociology, Academy of Sciences, Budapest, Hungary Swedish National Family Care Competence Centre, Sweden Eurocarers 21

Follow-Up Study on ICT based solutions for caregivers Eurocarers, Dublin, Ireland, 6 May 2011 Follow-Up Study on ICT based solutions for caregivers Eurocarers, Dublin, Ireland, 6 May 2011 Mapping & Analysis of 50 initiatives which promote the improvement of caring through ICT in 12 European countries Development of multi-level Impact Assessment Methodology measuring and assessing in quality terms the outputs and outcomes of ICT initiatives to support informal caregivers and family paid assistants Impact Analysis of 12 initiatives employing and evaluating the impact assessment methodology Scenario development and dissemination Using new data and dependency scenarios 22

May 2011 52 Mapped Initiatives By Country UK France Sweden Slovenia Leeds City Council May 2011 52 Mapped Initiatives By Country UK France Sweden Slovenia Leeds City Council Telecare Service Cyber France My Joice TV Red button telecare Carers UK online forum: Salveo ACTION My healthcare personal reminder HFT (formerly Home Farm Trust) Maison Vill'age Family Care Support Portal (Anhörigstödsportalen) Italy Book Your Own Breaks Forum aidants GAPET CAMPUS Telecare Scotland Web-napperon IPPI & AMIGO E-CARE Just Checking Open and distance learning Hungary C. A. S. A. (Care Assistants Search Agency) Nottingham Community Housing Association Germany Skype care Ring Project (Transferring supports for caregivers) Ireland SEKIS Emergency alarm T-Seniority Project Fold Group Pflege Wiki MOHANET Spain Try It Vitaphone Életvonal 24 Andalusian Telecare Service Emergency Response Ltd SOPHIA Body Guard Un cuidador, dos vidas (A caregiver, Two lives) Austria PAUL Czech Republic Ser Cuidador (Being a caregiver) Hilfswerk Notruf Alzheimer Blog Seniors' Telephone – Crisis Helpline (Zivot 90) Tele-gerontologia Alzheimer Website Finland Careion Emergency Care [email protected] pflege Vivago Watch Plattform für pflegende Angehörige The Caring. TV (Hyvinvointi TV)

Provisional findings from 50 cases Eurocarers, Dublin, Ireland, 6 May 2011 24 • Number Provisional findings from 50 cases Eurocarers, Dublin, Ireland, 6 May 2011 24 • Number and type of service reflect different Care regimes and regions of differential ICT uptake • While limited in some areas, there is Innovation everywhere: indicates demand benefits • Lots of NGO and private-led initiatives, with mixed funding. • Lots of support websites, we have yet to analyse how they provide benefit at different scales

Conclusions Eurocarers, Dublin, Ireland, 6 May 2011 25 • Plenty of examples of mature Conclusions Eurocarers, Dublin, Ireland, 6 May 2011 25 • Plenty of examples of mature and innovative • • • services Lots examples of positive benefits for carers and care recipients Diversity of types of services and benefits Needs and benefits are driving innovation by people at all levels. Little systematic evidence of impacts at any level Little evidence for how success can be scaled to transfer to other contexts We hope to add some evidence, and provide assessment tools to give: • Policy makers evidence to allocate resources effectively • Care organisations to learn and develop resources to support carers

Role for carer organisations Eurocarers, Dublin, Ireland, 6 May 2011 Digital Inclusion policies are Role for carer organisations Eurocarers, Dublin, Ireland, 6 May 2011 Digital Inclusion policies are good for carers, but much more is needed Carers have specific as well as general needs: • Customised training and support • Made available in the right form in the right place • Supported by services sensitive to carers needs. This needs strong input by organisations that know carers best 26

How can you help? Eurocarers, Dublin, Ireland, 6 May 2011 27 Your experiences – How can you help? Eurocarers, Dublin, Ireland, 6 May 2011 27 Your experiences – benefits and challenges of ICT -based services What do different carers actually need in relation to current ICTs? What are the challenges in making effective use of ICTs to support carers? We need better dissemination: Can Eurocarers play a lead role in using, shaping, and disseminating evidence

 ICTs to help carers Eurocarers, Dublin, Ireland, 6 May 2011 28 Information and ICTs to help carers Eurocarers, Dublin, Ireland, 6 May 2011 28 Information and Learning ICTs for: Independent Living for older people Tools that give access to information and training about caregiving, health and care issues for the dependent older persons, information and training about coping with caring; training for life - language, other work skills, accreditation of skills etc; Technology systems to allow elderly dependents to stay at home without continual formal or informal care support, thus relieving pressure on care-giver. It may allow caregiver to leave recipient alone, or help them in caregiving. Care Coordination Tools for coordinating formal sector and informal and family employed carers. Allows organisation of respite, sharing information on recipient's and carers needs etc. Personal support and social integration These provide a means of social, emotional & peer support, leisure, relief from isolation and chances for participation in work, civil society etc.

Five Types of ICT-supported services that help carers Eurocarers, Dublin, Ireland, 6 May 2011 Five Types of ICT-supported services that help carers Eurocarers, Dublin, Ireland, 6 May 2011 Support for dependent older person Support for Quality of care Support for Carers Quality of Life Facilitating ‘Participation’ in the economy and society Specific support for Family-employed migrant care-givers 29 Service for dependent older people, with the aim of improving their care, or changing the conditions of care An service that aims at improving or changing the conditions of care of the dependent older person by supporting or assisting the informal carer providing care at home, and improving the quality of care given: Service to support the carer themselves in their personal and emotional life, and in the case of family-employed care workers, to enable them to balance their work with other aspects of their life. . Service that enabling carers of all types to participate in aspects of life: Reconciliation of family and work; everyday activities such as banking, shopping; development non-care skills; enable informal carers to take part in active communities lobbying Initiatives that are aimed at the particular issues facing family-employed migrant care workers of all statuses. language learning; cultural integration, translations of skills training; combating isolation.

Challenges Eurocarers, Dublin, Ireland, 6 May 2011 ‘Macro’ Policy Makers Little knowledge in practice Challenges Eurocarers, Dublin, Ireland, 6 May 2011 ‘Macro’ Policy Makers Little knowledge in practice and policy circles LTC at a frontier of different uncoordinated policy and practice areas Barriers for evidence placed very high in centralised care systems Divergent national and political inheritance and pathways Local implementations hidden Innovation is User-led and NGO/private sector-led – ignored by state ‘Meso’ Organistions provision Social Care and Health Care services poorly linked and coordinated Little market for products and service outside established (alarms etc) Carers disregarded in design of high-tech solutions Technology management experience low in Social Care Organistions Professionals under pressure and without expertise Basic training and support for ICT not funded ‘Micro’ Carers in Everyday life Uptake of any support service low One-size does not fit all Informal carers often have low ICT skills, access and use Lack of training and support to use general or specific ICTs Suspicion that it is about machines replacing people Worries over privacy, safety etc Specific Barriers to Migrant care assistants 30

MAPPED INITIATIVES BY TYPE OF CARE REGIME AND COUNTRY Eurocarers, Dublin, Ireland, 6 May MAPPED INITIATIVES BY TYPE OF CARE REGIME AND COUNTRY Eurocarers, Dublin, Ireland, 6 May 2011 31 MAPPED INITIATIVES BY TYPE OF CARE REGIME AND COUNTRY Care regime 10 4 France 6 Germany 6 16 Sweden 5 Denmark 3 Overall number per care regime 8 Italy 5 Spain 4 Overall number per care regime 9 Hungary Eastern European 7 Overall number per care regime Mediterranean United Kingdom Austria Scandinavian (Nordic) 3 Overall number per care regime Continental (corporatist) Mapped initiatives Ireland Anglo-Saxon (liberal) Country 5 Czech Republic 2 Slovenia 2 Overall number per care regime 9 Total 52

Workshop Eurocarers, Dublin, Ireland, 6 May 2011 32 What experiences have you of ICT Workshop Eurocarers, Dublin, Ireland, 6 May 2011 32 What experiences have you of ICT services in these 5 categories? What are the benefits, do they improve on alternatives, complement them, how integral is ICT to carer support now? What barriers are their to adoption? What about setting up and running services using ICTs? Do we have the expertise and budgets in IT? How important are user-led projects, and consumer products? Should we wait for integrated carer support services by public and private providers? What about family employed assistants?