EUROCARERS 2011 6 May 2011, Dublin

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

2. Institute for Prospective Technological Studies 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”

3. 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; Evidence on ICTs for LTC to help: Policy Makers Organisations with interests in and responsibilities towards (Informal) Carers Carers, Dependents and Families Policy and Research Conference themes Balancing supply and demand for informal carers Combining care and work

4. ICTs in lTC: a challenge to everyone How are ICTs changing the possibilities, costs and expectations of LTC ‘Macro’ Analysis for policy makers 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 ‘Meso’ Organisations On-the ground organisation of care and health service provision On-the groundorganistion 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

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

6. ICT for LTC of the elderly • 20th century ICT: communication, broadcasting: Telephone, Radio, TV, music, alarms, disability specific devices • Internet Age ICTs for 21st 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, 3rd sector, volunteers and family to provide, organise and share care responsibilities; • Telehealth/ ehealthimprove health of older people and avoid dependence

7. ICT use has become a basic part of life and citizenship. 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 ICTs in social inclusion and exclusion. • 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 • 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.

8. ICTs for carers: Evidence? 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? • 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.

9. 2009-2010 Research • Exploratory research due to scarcity of data • Countries analyzed: • Desk-based analysis of reports and statistics : LTC provision, organization 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)

10. IPTS Reports • 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.ec.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.ec.europa.eu/publications/pub.cfm?id=3019 • Mollenkopf et al. (2010). The potential of ICT in supporting Domiciliary Care in Germany. http://ipts.jrc.ec.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.ec.europa.eu/publications/pub.cfm?id=3519

11. Healthcare professionals Home Care worker Care organisations Doctors & hospitals Cared Person legal & political framework Public authorities Health insurance Informal Caregiver Carer associations Informal Caregiver Voluntary groups Social networks Vocational training First aid family qualification On the job training family friends The needs of informal caregivers 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 Improved working conditions; stress relieve Information Communication, coordination Training Social, emotional & peer support

12. Healthcare professionals Home Care worker Care organisations Doctors & hospitals Cared Person legal & political framework Mobile phones, e-mail, internet, GPS Public authorities Health insurance Online information, phone helplines eHealth solutions, e.g. social alarms, telecare, assist. tech. Informal Caregiver Carer associations Informal Caregiver Online social networks, phones, skype, e-mail Voluntary groups Social networks Online training, phone helplines, online courses & training guides Migrants: multilingual information, iconbased devices, translation services Vocational training First aid family qualification On the job training family friends The opportunities offered by ICT 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 Improved working conditions; stress relieve Information Communication, coordination Training Social, emotional & peer support

13. ICTs to help carers • Information • and Learning • 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; Online training, assessment Web information TV-based Phone support • ICTs for: • 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. • 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 Tools for coordinating formal sector and informal and family employed carers. Allows organisation of respite, sharing information on recipient's and carers needs etc. Telework Internet for social networking, shopping, government services etc Smart homes AAL Telecare Ehealth Internet Organisation IT Social Networking over internet Phone-based systems

14. Carers Direct Helpline (UK) • Phone Helpline (+ e-mail & mail) • “Language Line”, a conferencing facility for instant translation by a trained interpreter. • 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

15. Online Training & Courses (UK) Facilitating ‘Participation’ in the economy and society Support for Quality of care Support for Quality of care • City & Guilds – Learning for Living • Online Learning Programme for carers: • Learning resource • nationally recognised (level 2) qualification: ‘Certificate in Personal Development & Learning for Unpaid Carers’ • since 2004, around 700 participants 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

16. Cuidadoras en Red 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

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

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

19. We need more, and better evidence to support policy decision making 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 Need for more evidence

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 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? “ICT-based solutions for caregivers: assessing their impact on the sustainability of long-term care in an ageing Europe “ New study: 2011 CARICT CARICT

21. Consortium partners:

22. Follow-Up Studyon ICT based solutions for caregivers 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

23. May 2011 52 Mapped Initiatives By Country

24. Provisional findings from 50 cases • 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 and 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

25. Conclusions • 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

26. Role for carer organisations • 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

27. How can you help? • 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 • Thank you!

28. ICTs to help carers • Information • and Learning • 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; • ICTs for: • 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. • 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 Tools for coordinating formal sector and informal and family employed carers. Allows organisation of respite, sharing information on recipient's and carers needs etc.

29. Five Types of ICT-supported services that help carers Support for dependent older person • Service for dependent • older people, with the aim of improving their • care, or changing the conditions of care Support for Quality 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: Support for Carers Quality of Life • 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. . Facilitating ‘Participation’ in the economy and society 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 Specific support for Family-employed migrant care-givers • 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 .

30. Challenges ‘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 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 • 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 ‘Meso’ Organistions ‘Micro’ Carers in Everyday life

31. MAPPED INITIATIVES BY TYPE OF CARE REGIME AND COUNTRY

32. Workshop • 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?