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ISG*ISARC2012 Eindhoven, 27th June 2012

ICT-enabled services for carers and care: lessons from policy and innovation

Stephanie Carretero, James Stewart & Clara Centeno Joint Research Centre (JRC) Institute for Prospective Technological Studies The European Commissions Research-Based Policy Support Organisation

Relevance of the research

Informal carers: Assumes today between the 50 to the 90% of LTC. Little recognition of their role. Poor awareness of their needs and access to formal services. ICT as a more effective enabler of social support and coping strategies. DAE and EIPAHA support the need of empowerment and inclusion of informal carers through the identification and deployment of ICTs.

28 June 2012

IPTS research on ICT for domiciliary care

Exploratory research on ICT for carers (2008-09)
1) What ICT applications / tools are used to support informal caregivers of older people? 2) Opportunities and barriers for ICT use? 3) Potential policy options? Focus on informal caregivers in general, and in particular for migrants
Potential of ICT for informal care: need of more evidencebased data on impact, scalability and business models

CARICT (2011)
1) how ICT can support the creation of a sufficient number of available (motivated) and skilled informal caregivers and family employed care workers? 2) how technology-enabled services can allow above caregivers to: - better engage with care recipient, - improve their quality of life and - improve quality and efficiency of care?

Funded by DGINFSO and JRC Research team: IPTS and European Centre

Research Methodology
12 Countries: UK, IE AU, FR, DE SE, FI - IT, ES HU, CZ, SI European Center for Social Welfare policy and Research + 4 National research organisations: CIRCLE (UK), INRCA (IT),
Institute of Sociology of Academy of Sciences (HU), Swedish National Family Care Competence Centre, and Eurocarers
Geographical coverage Beyond pilot status

Research methods:
1) 2) 3) 4) Mapping of initiatives in 12 MS through a literature review Development of an Multi-Level Impact Assessment Methodology (QT, QL) In depth analysis of innovation processes and impact through interviews with initiative coordinators and documents analysis Expert (June 2011) and policy (Nov 2011) validation workshops with 42 experts

Types of ICT:
Independent living, Information and learning, Personal support and social integration for carers, and care coordination

EVALUATION OF: Cross analysis of impact, success factors, drivers and challenges

Main findings
1.- A first analysis of 52 ICT based initiatives for informal care in this research pointed to the existence of a wide range of successful examples of ICT-based support for caregivers across Europe.

CARICT (52) initiatives in 12 countries

MAPPED INITIATIVES BY TYPE OF CARE REGIME AND COUNTRY

Care regime

Country Ireland United Kingdom

Mapped initiatives 3 7 10

Anglo-Saxon (liberal)

Overall number per care regime Austria France

4 6 6 16

Continental (corporatist)

Germany Overall number per care regime Sweden Finland

5 3 8

Scandinavian (Nordic)

Overall number per care regime Italy Spain

5 4

Mediterranean

Overall number per care regime Hungary Czech Republic

5 2 2

Eastern European

Slovenia Overall number per care regime

Total

52

UK Leeds City Council Telecare Service Carers UK online forum: HFT (formerly Home Farm Trust) Book Your Own Breaks Telecare Scotland Just Checking Nottingham Community Housing Association Ireland Fold Group Try It Emergency Response Ltd

France Cyber France Salveo Maison Vill'age Forum aidants Web-napperon Open and distance learning Germany SEKIS Pflege Wiki Vitaphone SOPHIA PAUL Alzheimer Blog

Sweden My Joice TV ACTION Family Care Support Portal (Anhrigstdsportalen) GAPET IPPI & AMIGO Hungary Skype care Emergency alarm MOHANET letvonal 24 Body Guard Czech Republic Seniors' Telephone Crisis Helpline (Zivot 90) Careion Emergency Care

Slovenia Red button telecare My healthcare personal reminder Italy CAMPUS E-CARE C.A.S.A. (Care Assistants Search Agency) Ring Project (Transferring supports for caregivers) T-Seniority Project Spain Andalusian Telecare Service Un cuidador, dos vidas (A caregiver, Two lives) Ser Cuidador (Being a caregiver) Tele-gerontologia

Austria Hilfswerk Notruf Alzheimer Website n@tzwerk pflege Plattform fr pflegende Angehrige

Finland Vivago Watch The CaringTV (Hyvinvointi TV)

Independent living
TELECARE SCOTLAND
One of a range of national initiatives to improve health and care services (JIT, with 70m GBP budget; 20m investment in on Telecare) Replacement of institutional care with housing including various sensors and alarms, and mobile care staff. Part of a range of ICT-based services to dependents and carers Partnership with carer organisations and local authorities Service rolled out over 17 regions and now integrated into NHS24service (new change funding programme on aging in place) Considerable innovation and learning over 5 year period. 2007 onwards, over 43,000 people accessed a telecare service, with more than 30,000 still receiving one in March 2011 . The value of benefits arising from telecare expenditure from 2006 -2011 approx. 79m. Most savings split between avoidance of care home admissions, and avoiding hospital inpatient stays.

SOPHIA (DE)
SOziale Personenbetreuung Hilfen Im Alltag After State funded R&D phase (1.5m EURO) SOPHIA founded in 2005 by CUP 2000 in partnership with Northern Bavarian housing company (THS Wohnen GmbH) and operates in five German states Service to elderly with limited mobility with low-moderate care need Package of telecare,safety wristband with monitoring function, GPS monitoring, PC-TV terminal to service centre. SOPHIA Franken involves about 100 staff inc 85 volunteers in service centres who are godparents of the users Development of a platform of services to older people Co-payment financing, with basic insurance cover. Reduced demands and stress on family members who often live at a distance

Carers Information and help

Plattform fr pflegende Angehrige, Central government funded website to support carers with over 60000 users a year. Austria

Carers UK run a carers web and phone support service Total charity budget 3.5m GBP from donations and consultancy

Online Training & Courses (England)

Caring with Confidence National (NHS) initiative seeking to provide training to 10.000 carers over 3 years Linked to national Carers Direct help line (cost 2.7m GBP)
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 in 2009

Personal support and social integration

Skypecare - Hungary
Pilot use of Skype on a PC for frail older people at home to talk to distant relatives Initiated by a University, Care charity and small business Av. 84 year-old frail, non-IT users, using home care service, with distant relatives and weak social network Reluctance by support by large firms and young social workers. Adaptation of technology and support of volunteers, specially young people, family and formal carers made service possible Enthusiasm, connection with distant family, introduction to new technology improved wellbeing and autonomy of older people, reducing need for care Builds intergenerational solidarity

Care coordination
Many services to enable families friends and volunteers to share and coordinate caring responsibilities i.e. private social networking tools for families of dependent people: ShareCARE Netherlands Caring Bridge,Carecentral, SharetheCare, Lotsa Helping Hands - USA Low cost or free to end users (0-30 euros/month)

2.- Positive impact on health of informal carers and the care system
ICT based services for domiciliary care : Increase the quality of life for older people and carers, Increase the access to qualified long- term care, Allow the integration of health and social care services, empowering carers, to ensure adequate informal long term care, and Help to generate direct savings that contribute to the sustainability of the system.

3.- SUCCESS FACTORS

The involvement of end-users, which includes carers, elderly people and formal care staff, in the design of services, complemented by training in digital and care services competences; The progressive integration of the ICT based service inside the existing or traditional social and health care system; The cooperation among stakeholders; being especially relevant the engagement of nonprofit organisations The promotion of the involvement of different kind of stakeholders acting as intermediaries in the delivery chain of ICT based services for informal carers. The exploitation of existing ICT and digital inclusion infrastructure, The development of policies that support decisions makers and providers at multiple levels and functions. The policy role is central for the success of the transferability

4.- Policy relevance

Policy leadership to put in place the combination of complementary already existing support and funding programmes for stakeholders is at the core of the policy recommendations for the development, implementation and scalability for ICT based services for domiciliary care.

5.- The relevant role of third Sector relevance.

It appear repeatedly relevant for the success of the initiatives to recognise the role and to support the value of the participation of the third sector and of volunteering in the provision of ICT based service for informal care.

Conclusions
1.- Social innovation for informal care is taking place. Existence of running and successful initiatives of ICT based initiatives for domiciliary care across Europe that serves as good practices to stress and support the role of informal carers. 2.- Impact on the quality of life, of care and sustainibility of the systems. 3.- The involvement of end-users in all the phases of the development of the ICT services is central for the success of the initiatives. 4.- Policy leadership with the combination of already existing and new funding and supporting programmes is the main role to be taken by policy-makers 5.- The third sector and volunteers are acquiring a main role for the sustainability of these services.

IPTS available reports

Long term care challenges in an Ageing Society: The role of ICT and Migrants Results from a study on England, Germany, Italy and Spain (2010), integrates the results of the following reports: The potential of ICT in supporting The potential of ICT in supporting The potential of ICT in supporting The potential of ICT in supporting Domiciliary Care in Italy (2010) Domiciliary Care in England (2010) Domiciliary Care in Germany (2010) Domiciliary Care in Spain (2010) in supporting Immigrant Care Workers in

CARICT: Analysis and Mapping of 52 ICT-based initiatives for caregivers, Deliverable 2.3 (2011) CARICT: Final report containing case-by-case detailed description and analysis of selected 12 Good practices (2012) Forthcoming Final Policy Report (2Q2012) http://is.jrc.ec.europa.eu/pages/EAP/eInclusion.html

Thank you very much for your attention!

Stephanie.carretero-gomez@ec.europa.eu

http://is.jrc.ec.europa.eu/pages/EAP/eInclusion.html