This document describes a research project conducted by the Joint Research Centre (JRC) to map and analyze initiatives using information and communication technologies (ICTs) to support long-term care for the elderly and their informal carers across 12 European countries. The research identified 52 initiatives utilizing various forms of ICT, including telecare, online training, and social networking. The initiatives provided services such as emergency response, care coordination, information and learning resources, and ways to increase social support and integration for both the elderly and their carers. The research assessed the impact of the initiatives on care quality and efficiency as well as the lives of those involved.

1. ICT-enabled services for carers and care: pathways
and actors in the development of services for Long
Term Care
James Stewart, Stephanie Carretero, & Clara Centeno
Joint Research Centre (JRC)
Institute for Prospective Technological Studies
The European Commission’s Research-Based Policy Support Organisation

2. Joint Research Centre
The European Commission’s in-house science service
www.jrc.ec.europa.eu
Serving society
Stimulating innovation
Supporting legislation

3. 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”

4. Innovation in Long Term Care
Long Term Care is a major policy challenge in the face of aging
population (demographic aging) and other social and cultural
changes.
Strong national differences in organisation of care, and status of
care for the elderly (state services, insurance, family, volunteers
etc)
Care provided by Family, and a heterogeneous set of care services:
health and social care, state, private and third sector. Existing
organisation and techniques considered insufficient.
Support to the elderly, and to family carers is organised locally and
poorly funded
Diverse and distributed experimentation across Europe – “ social
October 25, 2012 4
innovation”

5. Policy to support Change
Policy questions Research
How can the European 1. Identify effective ICT-enabled
Commission support innovation services
that produces effective Describe services and their
outcomes: various impacts
1. Positive outcomes for elderly 2. Advise on the Transferability,
and carers (verifiable with Replicability and Scalability of
evidence) these ‘promising’ services
2. more effective and efficient Explore the organisational, policy
provision of services and technological innovation
3. stimulation of economic processes and practices in place
development in Europe in relation to ICTs,
Long Term Care and informal
carers
October 25, 2012 5

6. Making the users visible and giving
them a voice
Family and other informal carers invisible in social and health care
system
Users in design of ICTs systems for LTC are the “the elderly”,
health care professionals
How are carers becoming ‘users’ in development of ICT-enabled
services for long term care?
October 25, 2012 6

7. Aims:
Provide some evidence, and assessment tools to give:
• Policy makers evidence to allocate resources effectively
• Care and carer organisations resource to learn and develop
resources to support carers
• Support the systematic inclusion of carers interests and concerns
in the development of ICT-enabled services such as telecare, AAL
October 25, 2012 7

8. Proportion of population aged 80 or more, EU-27 (% of total population)

9. Trends in Long Term Care
(LTC)
Changing family
Structures
Life expectancy Mobility
Labor force
Ageing Demand Caregiver
for care s
Women at work
supply
Quality of care Difficult conditions of
work/life
ICTs involved in many of these developments

10. Family Carers Existing Support for family
carers consists of financial
Family carers and unqualified, measures and services
often illegal , family paid care Not helped by
assistants provide 50-90% of • Limited support by care
LTC to dependent older people services, and limited uptake of
in European states respite care, counselling,
support groups, formal care
Carers carry a heavy burden : support, training etc
• Poverty and unemployment • Many carers do not recognise
• Isolation both physical and social themselves as carers.
• Physical and psychological stress • Sidelined or ignored by
• Lack of skills in caregiving professional care and health
(leading to poor caregiving) services
• Lack of knowledge of LTC • Formal care => stress on
services family
• Not part of mainstream Long
Term Care Policy

11. Best Practice: Scotland?
Scotland is a leader in fields such as:
• Telecare
• Joined-up health and care services
• Inclusion of family carers in telecare
• Support for carers, and political profile of carers
• Focus on family carers in chronic illness
• Involvement of care organisations in innovation projects
But in general the discourse in future-looking eHealth, LTC policy
often seems to ignore or downplay role of informal carers for
dependent elderly.

12. IPTS research on ICT for domiciliary care
Exploratory research on ICT for carers (2008-09) Potential of ICT
for informal
CARICT (2011) care: need of
more evidence-
1) how ICT can support the creation of a based data on
impact,
sufficient number of available (motivated) scalability and
and skilled informal caregivers and family business models
employed care workers?
2) how technology-enabled services can allow
above caregivers to: Funded by
DGINFSO and
- better engage with care recipient, JRC
- improve their quality of life and Research team:
- improve quality and efficiency of care? IPTS and
European Centre

13. 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) Mapping of initiatives in 12 MS through a literature review Types of ICT:
2) Development of an Multi-Level Impact Assessment Methodology (QT, QL) Independent living,
Information and learning,
3) In depth analysis of innovation processes and impact through interviews Personal support and social
with initiative coordinators and documents analysis integration for carers, and
4) Expert (June 2011) and policy (Nov 2011) validation workshops care coordination
EVALUATION OF:
Cross analysis of impact, success factors, drivers and challenges

14. ICTs to help carers
Online training,
ICTs for: assessment
Web information
TV-based
Information Phone support
and Learning
Independent Personal support
Living and social
for older people integration
Telework
Smart homes
Internet for
AAL Care Coordination social
Telecare
networking,
Ehealth
shopping,
Internet Organisation ITgovernment
Social Networking over internet
services etc
Phone-based systems

15. CARICT (52) initiatives in 12 countries
MAPPED INITIATIVES BY TYPE OF CARE REGIME AND COUNTRY
Care regime Country Mapped initiatives
Ireland 3
United Kingdom 7
Anglo-Saxon (liberal)
Overall number per 10
care regime
Austria 4
France 6
Continental Germany 6
(corporatist)
Overall number per 16
care regime
Sweden 5
Finland 3
Scandinavian (Nordic)
Overall number per 8
care regime
Italy 5
Spain 4
Mediterranean
Overall number per
care regime
9
Hungary
5
Czech Republic
2
Slovenia
Eastern European 2
Overall number per
care regime
9
Total 52

16. UK France Sweden Slovenia
Leeds City Council Telecare Cyber France My Joice TV Red button telecare
Service
Carers UK online forum: Salveo ACTION My healthcare personal reminder
HFT (formerly Home Farm Trust) Maison Vill'age Family Care Support Portal Italy
(Anhörigstödsportalen)
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 Germany Skype care Ring Project (Transferring
Association 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 Tele-gerontologia
Helpline (Zivot 90)
Alzheimer Website Finland Careion Emergency Care
n@tzwerk pflege Vivago Watch
Plattform für pflegende Angehörige The CaringTV (Hyvinvointi TV)

17. Name (Start year) Service description Care support means
ACTION SE University Spin-off provides technical system, training and support to Elderly spousal carers can use Web-based training support, video
(1998) municipal care services, who use service to facilitate quality home care. phone links to a social care call centre, to communicate with
network of families and specialised practitioners
CAMPUS IT Care organisation develops and provides training material to local Set of online and DVD-based training material for informal carers
(2004) municipalities and individuals. to improve caring skills and life chances for family and carers and
migrant care assistants
CARING FOR OTHERS Canad Multi-service health service organisation programme verified by research 10 weekly group training sessions via internet video to high burden
(2000) a and standardised and documented to be licenced to other care providing housebound carers, with follow-up video support group, and online
organisations trying to reach housebound carers. information.
CUIDADORAS En RED ES University/voluntary-led initiative with local ICT- centres in rural areas to Training courses on ICT-skills to improve access to information and
(2008) support carers in Andalucia. social support, primarily for female family carers and care
assistants. Online community.
E-CARE IT Regional and local health and care planning and coordination platform Care planning and coordination with multiple agencies, families
(2005) run by a private company, but involving large range of public and private and volunteers; provides call centres, telealarms, tele-health, video
organisations. conferencing, online information, tele-freinding
IPPI +AMIGO SE Services sold by private company to local care authorities and some TV based communication system for older people to communication
(2004) individuals in Sweden to help them meet mandatory care requirements. with care services and family, (including teenagers) with call centre
Exploring market in Asia. for relatives to update and coordinate care.
EMERGENCY ALARM HU Service provided by large NGO in welfare services to local authorities and Social alarm over GSM, with call centre staffed primarily by
(1994) other care providing organisations (e.g. churches) in urban and rural volunteers, facilitating home care.
areas.
JUST CHECKING UK Private company provides technology, service and training via Electronic Monitoring of movements of people with early-stage
(2003) subscription to local care commissioners in the UK dementia sufferers living at home helps professionals and family
better understand care needs, building trust, and facilitating
independent living and home care.
PLATFORM FOR AU A central government funded and operated service to provide information Information web site & hot line in two languages about caring,
CARING FAMILY to carers national wide building on existing counselling hotline. 92000 services etc.
website visits in 2010
MEMBERS
(2006)
REACH I/II USA Research driven project (RTC) to determine scientifically design and test Integrated service supported by nurses, online, video and telephone
(experimental effective multi-component support interventions for carers across a range including therapy, advice, a bulletin board and training aimed at
of US locations. reducing burden and depression in family carers, to support carers
1995, 2001) of dementia sufferers
SOPHIA DE Initiative by housing company to support tenant to remain in their homes, Multiple types of Social alarm, and a call centre to support
(2005) in cooperation with local care services and a service provider company identification of older person's needs, and provide phone based
operating in a number of regions. End users pay for 2 different service social support to older people and carers by volunteers.
packages. 3500 users in Germany in 2011.
TELECARE SCOTLAND UK National programme to develop telecare to support home care in care Social alarm and home-care sensors to support local care services
(2006-2011) now regions across Scotland, involving central change team, local authorities, and family members care for older people in the community.
private technology suppliers and carer support associations. Incorporated
mainstream service into 'NHS24' service in 2012.

18. 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

19. Independent living
TELECARE SCOTLAND +NHS 24
• 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 ‘NHS24’service
(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.

20. Carers
Information and
help
Plattform für
pflegende
Angehörige,
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

21. Online Training & Courses
(England)
Caring with Confidence National (NHS) City & Guilds – Learning for Living
initiative seeking to provide training to Online Learning Programme for carers:
10.000 carers over 3 years (1) Learning resource
Linked to national Carers Direct help line (2) nationally recognised (level 2)
(cost 2.7m GBP) qualification: ‘Certificate in Personal
Development & Learning for Unpaid
→ Local group sessions Carers’
→ Workbooks for self-study
→ Online study sessions
→ Content/courses for BME since 2004, around 700 participants in 2009
carers

22. 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

23. 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)

24. Impact analysis (micro level)
Services Impacts on Informal Carer Impacts of Older Person
- hours of care
+ independent living & delay
- eliminates the need for constant presence
dependency
ICT for Independent + peace of mind
+ health status
Living - anxiety
+ perception of safety
Older person + health-related quality of life
+ compliance in treatment
Also for carers + reconciliation of care and work and family
+ improved relation carer-older
+ supports participation of other actors in care
person
(family, volunteers)
+ strengthen and develop social
- burden of carer
ICT for networks
+ supports participation of other members of the
communication + promotes self-support
family (in part. Young)
Older person - isolation
+ promotes volunteering
+ health status
+ accessibility to training
ICT for Information
+ caring skills and digital competence
& Learning + Quality of care
+ employability
Informal carer
+ sense of security
+ promotes development of informal social
ICTs for Personal networks of carers that provide emotional and + Quality of care
Support & Social professional support + Quality of life
Integration - isolation + Improved relation carer-older
Informal carer - stress person
+ Quality of life

25. Savings at meso-macro level
Savings in Social care Savings in Health care
1- reduces the need for support of 3- reduces hospital admissions
formal care both to the carer and to (because carer can provide better care
the older person and is in better health)
Services supporting 2- delays institutional care of older
the informal carer person, because carer "can cope"
Examples:
1,2 : ACTION (SE): 10.000€ per
family/year
1- delays institutional care of older 5- reduces hospital admissions
person 6- reduces length of hospital stays
2- reduces number of care visits
3- reduces overnight care stays
4- improves quality and effectiveness
of formal care
Services supporting
Examples:
Older person 1: Emergency Alarm (HU):
Also for carers - reduces 40% institutionalisation;
- home care 7 * cheaper than
institutional (hard to substantiate)
Examples:
1, 5, 6: Telecare Scotland (UK): estimated savings of 70m GBP (over 3 years), for
20m GBP investment (best of evidence, but still constested)

26. 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.
• Plenty of innovation and experimentation: universities, entrepreneurs,
carer support organisations, health and social care organisations,
telecare provider
• Little transferable ‘legitimate’ evidence of impact
• The third sector and volunteers are acquiring a main role for the
sustainability of these services.

27. Organisational, policy and
technological innovation processes and
practices
October 25, 2012 27

28. Drivers of development of ICT services
1. Improve quality of care and quality of life of older people on part
of professionals and families;.
2. Empowerment of older people to live at home and independently
for longer.and of carers to look after family members without
excessive burden
3. the search for efficiency and effectiveness improvements in
social and health care, being mostly motivated by:
 Shift from expensive, and often low quality institutional care to home
care for the elderly.
 Improve the working conditions of care professionals.
 Integrate different aspects of the health and social care service to
provide more effective and efficient services.
4. the need to realise systematic cost savings, mainly to reduce the
costs of formal institutional support, especially medical and
institutional care that supports home care.
October 25, 2012 28

29. Barriers
To demonstrate the value of ICT in the provision of long-term care.
1. The acquisition of digital competences and skills and the access
and use of ICT infrastructures.
2. Value comes from systemic change, which is often unrealised
3. Recognition of the role of the informal carers
4. Scepticism, negative attitude and lack of knowledge
5. Providing convincing scientific evidence
6. The creation of an efficient, well functioning business model
7. initiatives are being run by small scale innovation players,
making extensive deployment difficult: The fragmentation of
care services acts as a barrier to these new organisations trying
to enter the market
October 25, 2012 29

30. 3.- SUCCESS FACTORS
1. 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;
2. The progressive integration of the ICT based service inside the existing or
traditional social and health care system;
3. The cooperation among stakeholders; being especially relevant the
engagement of non-profit organisations
4. The promotion of the involvement of different kind of stakeholders
acting as intermediaries in development of ICT based services for
informal carers.
5. The exploitation of existing ICT and digital inclusion infrastructure,
6. The development of policies that support decisions makers and
providers at multiple levels and functions.
7. The policy role is central for the success of the transferability

31. Carer as “users” in the innovation
process: role of carer organisations
Novel type of user representative in Europe.
• UK and Ireland, Scandinavia leads development
• Policy campaigning, local and national service provision.
• Put family carers on political agenda
Carers organisations taking an active role in innovation, but are
poorly resourced and lack capacity to engage in technological
innovation
In best cases Carers organisations take on key roles in innovation
and knowledge transfer.
How can/has capacity of these organisations be/been developed?
31

32. Transferability and scalability of
services in a fragmented environment
The potential to develop a practice or service that is available in
one locality into other locations
1. Scaling a service e.g. local area to national (infrastructure)
2. Knowledge transfer between local areas
• ‘best practice’
• Knowledge transfer mechanisms
• Reinvention
Which path is best?
How to combine scaling of common resources – e.g. infrastructure and
common technical components, with local configuration and
reinvention?
How to ensure continued local experimentation v. consolidation ?
October 25, 2012 32

33. 3 Mechanisms and intermediary agents
1 Transfer of experience from one locality to another by
intermediaries
Key Agents small firms, third sector organisations.
Little scaling, continual re evaluation and careful redeployment in
each location.
Policy role
a) Demand support: national or regional care programmes that
legitimise ICTs as solutions, coordinate exchange of best
practice, and provide change funds
b) Supply side: support small scale independent providers;
encourage partnerships and takeovers by large providers
October 25, 2012 33

34. 2. Services could 'spread out' over several nearby care
areas, by a mix of policy and private intermediaries;
mainly home care providers that already operate across a
number of localities.
Scaling, with continual improvement
3.- Regional (National) health and care services led intra-
regional transfer and capability building
Regional/national Policy leadership important (cost)
Heterogenous players to be aligned
A mix of scaling and knowledge transfer.
October 25, 2012 34

35. ACTION-emerged from EU project. Local transfer, municipality by municipality; small
company cannot do international transfer;
JUST CHECKING: service that can be customised and sold to different care
commissioners, by a private company, municipality by municipality; Partnership
with large telecare operator supports for effective access to customers.
HUNGARIAN EMERGENCY ALARM : national NGO develops service and offers it to
local public authorities and care providers. Enables transfer of innovations across
local areas. Local municipalities free to buy services. Similar services available in
many countries.
CUIDADORAS EN RED: service operates in several regions. Expertise primarily with
local organisers.
CAMPUS: EU funding originally; proposals to internationalise; local transfer between
Italian regions and some internationalisation in progress.
E-CARE: mature services, with well documented and developed computer systems
and protocols: transferred between local care regions, using policy frameworks and
private company; Supply firm prevented by law from international development;
participation in European projects.
TELECARE SCOTLAND: Coordinated national programme of improvement, local
benchmarking. Extensive documentation and best practice.
October 25, 2012 35

36. Questions
What tools has STS to deal with question
of scalability v. transferability?
How can these be use to advise policy and
other intermediaries?
October 25, 2012 36

37. Policy Recommendations
Policy leadership to put in place the right combination of
complementary, pre-existing, support and funding
programmes for stakeholders
1. To raise awareness
2. To continue supporting research, experimentation and
innovation
3. To support the exchange of good practices, the collection
of evidence and the transferability
4. To support a European market of ICT based services for
informal carers and elderly people
5. 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
October 25, 2012 37

38. 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 four national reports
Interim CARCIT reports
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 (4Q 2012)
Can technology – based services support long-term care challenges in home care?
Authors :
Analysis of evidence from social innovation good practices across the EU CARICT
Project Summary Report (Stephanie Carretero, James Stewart, Clara Centeno,
Francesco Barbadella, Giovanni Lamura, Andrea Schmidt)
http://is.jrc.ec.europa.eu/pages/EAP/eInclusion.html

39. Thank you very much for your attention!
James.stewart@ec.europa.eu
http://is.jrc.ec.europa.eu/pages/EAP/eInclusion.html

41. Impact Assessment Methodology
Micro, meso and macro levels

42. Impact Assessment Methodology - Dimens
Dimension Micro Meso Macro
E.g. Number of carers
reconciliation between E.g. Possibility to balance well
E.g. Efficiency at work that balance care &
1. care and work care & work activities
work activities
Quality of Life E.g. Positive social contacts & E.g. Reduction in family E.g. Increased social
social life
of Informal relationships conflicts cohesion & inclusion
Carer other dimensions of
E.g. Psychophysical health & life
quality of life (health, E.g. Number of non-stressed carers
satisfaction
leisure etc.)
2. E.g. Psychophysical health and
E.g. Number of non-stressed carers
Quality of Life of Paid Assistant independence level
E.g. Number of reported E.g. Target number of
3. E.g. Physical level; Psychological
cases of abuse/neglect by dependent older people
Quality of Life of Care Recipient level; Independence level
family members supported
4.
E.g. Improvement of caregiving activities by direct (e.g. training) or indirect (e.g.
Quality of Care provided by
decreasing burden of carer) factors
Informal Carer and Paid Assistant
E.g. Care efficiency (in terms of E.g. Efficiency and
E.g. Efficiency and
5. quality and cost containment) Sustainability for Social
Sustainability for care
Care Efficiency & Sustainability and sustainability for care Protection and Care
providers
recipients and families systems
E.g. Resources of Care
E.g. Marketability of ICT
6. E.g. Acceptability by carer and system to support ICT
devices (from ICT device
Acceptability care recipient devices (e.g. public
producer point of view)
investments in ICT)
E.g. Availability of services E.g. Availability of
7. E.g. Accessibility of initiative
(from care provider point services (from system
Infrastructure & Accessibility by carers
of view) point of view)