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

www.jrc.ec.europa.eu

Serving societyStimulating innovationSupporting legislation

Joint Research Centre

The European Commission’s in-house science service

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”

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 innovation”

4April 11, 2023

Policy to support ChangePolicy questions

How can the European Commission support innovation that produces effective outcomes:

1. Positive outcomes for elderly

and carers (verifiable with

evidence)

2. more effective and efficient

provision of services

3. stimulation of economic

development

Research1. Identify effective ICT-enabled

services

Describe services and their

various impacts

2. Advise on the Transferability,

Replicability and Scalability of

these ‘promising’ services

Explore the organisational, policy

and technological innovation

processes and practices in place

in Europe in relation to ICTs,

Long Term Care and informal

carers5April 11, 2023

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?

6April 11, 2023

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

7April 11, 2023

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

Trends in Long Term Care (LTC)

Changing family Structures

Mobility

Labor force

Women at work

Difficult conditions of work/life

Caregivers

supply

ICTs involved in many of these developments

Demandfor care

Life expectancy

Ageing

Quality of care

Family Carers

Family carers and unqualified, often illegal , family paid care assistants provide 50-90% of LTC to dependent older people in European states

Carers carry a heavy burden :• Poverty and unemployment• Isolation both physical and social• Physical and psychological stress• Lack of skills in caregiving

(leading to poor caregiving)• Lack of knowledge of LTC

services

Existing Support for family carers consists of financial measures and servicesNot helped by• Limited support by care

services, and limited uptake of respite care, counselling, support groups, formal care support, training etc

• Many carers do not recognise themselves as carers.

• Sidelined or ignored by professional care and health services

• Formal care => stress on family

• Not part of mainstream Long Term Care Policy

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.

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?

IPTS research on ICT for domiciliary care

Exploratory research on ICT for carers (2008-09) Potential of ICT for informal care: need of more evidence-based data on impact, scalability and business models

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, SIEuropean 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

Research methods:1) Mapping of initiatives in 12 MS through a literature review2) Development of an Multi-Level Impact Assessment Methodology (QT, QL)3) In depth analysis of innovation processes and impact through interviews

with initiative coordinators and documents analysis4) Expert (June 2011) and policy (Nov 2011) validation workshops

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

Geographical coverage

Beyond pilot status

Types of ICT:

Independent living, Information and learning, Personal support and social integration for carers, and care coordination

ICTs to help carers

ICTs for:

Independent Living

for older people

Information and Learning

Personal support and social

integration

Care CoordinationSmart homesAALTelecareEhealthInternet Organisation IT

Social Networking over internetPhone-based systems

Online training, assessmentWeb informationTV-basedPhone support

TeleworkInternet for social networking, shopping, government services etc

MAPPED INITIATIVES BY TYPE OF CARE REGIME AND COUNTRY

Care regime Country Mapped initiatives

Anglo-Saxon (liberal)

Ireland 3

United Kingdom 7

Overall number per care regime

10

Continental (corporatist)

Austria 4

France 6

Germany 6

Overall number per care regime

16

Scandinavian (Nordic)

Sweden 5

Finland 3

Overall number per care regime

8

Mediterranean

Italy 5

Spain 4

Overall number per care regime 9

Eastern European

Hungary5

Czech Republic2

Slovenia2

Overall number per care regime 9

Total 52

CARICT (52) initiatives in 12 countries

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  

n@tzwerk pflege Vivago Watch    

Plattform für pflegende Angehörige The CaringTV (Hyvinvointi TV)    

Name (Start year) Service description Care support means

ACTION(1998)

SE University Spin-off provides technical system, training and support to municipal care services, who use service to facilitate quality home care.

Elderly spousal carers can use Web-based training support, video phone links to a social care call centre, to communicate with network of families and specialised practitioners

CAMPUS(2004)

IT Care organisation develops and provides training material to local municipalities and individuals.

Set of online and DVD-based training material for informal carers to improve caring skills and life chances for family and carers and migrant care assistants

CARING FOR OTHERS(2000)

Canada

Multi-service health service organisation programme verified by research and standardised and documented to be licenced to other care providing organisations trying to reach housebound carers.

10 weekly group training sessions via internet video to high burden housebound carers, with follow-up video support group, and online information.

CUIDADORAS En RED(2008)

ES University/voluntary-led initiative with local ICT- centres in rural areas to support carers in Andalucia.

Training courses on ICT-skills to improve access to information and social support, primarily for female family carers and care assistants. Online community.

E-CARE(2005)

IT Regional and local health and care planning and coordination platform run by a private company, but involving large range of public and private organisations.

Care planning and coordination with multiple agencies, families and volunteers; provides call centres, telealarms, tele-health, video conferencing, online information, tele-freinding

IPPI +AMIGO(2004)

SE Services sold by private company to local care authorities and some individuals in Sweden to help them meet mandatory care requirements. Exploring market in Asia.

TV based communication system for older people to communication with care services and family, (including teenagers) with call centre for relatives to update and coordinate care.

EMERGENCY ALARM(1994)

HU Service provided by large NGO in welfare services to local authorities and other care providing organisations (e.g. churches) in urban and rural areas.

Social alarm over GSM, with call centre staffed primarily by volunteers, facilitating home care.

JUST CHECKING(2003)

UK Private company provides technology, service and training via subscription to local care commissioners in the UK

Electronic Monitoring of movements of people with early-stage dementia sufferers living at home helps professionals and family better understand care needs, building trust, and facilitating independent living and home care.

PLATFORM FOR CARING FAMILY MEMBERS(2006)

AU A central government funded and operated service to provide information to carers national wide building on existing counselling hotline. 92000 website visits in 2010

Information web site & hot line in two languages about caring, services etc.

REACH I/II(experimental1995, 2001)

USA Research driven project (RTC) to determine scientifically design and test effective multi-component support interventions for carers across a range of US locations.

Integrated service supported by nurses, online, video and telephone including therapy, advice, a bulletin board and training aimed at reducing burden and depression in family carers, to support carers of dementia sufferers

SOPHIA(2005)

DE Initiative by housing company to support tenant to remain in their homes, in cooperation with local care services and a service provider company operating in a number of regions. End users pay for 2 different service packages. 3500 users in Germany in 2011.

Multiple types of Social alarm, and a call centre to support identification of older person's needs, and provide phone based social support to older people and carers by volunteers.

TELECARE SCOTLAND(2006-2011) now mainstream service

UK National programme to develop telecare to support home care in care regions across Scotland, involving central change team, local authorities, private technology suppliers and carer support associations. Incorporated into 'NHS24' service in 2012.

Social alarm and home-care sensors to support local care services and family members care for older people in the community.

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

Independent living

• 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.

.

TELECARE SCOTLAND +NHS 24

Carers Information and help

Carers UK run a carers web and phone support service

Total charity budget 3.5m GBP from donations and consultancy

Plattform für pflegende

Angehörige, Central government funded website to

support carers with over 60000 users a

year.Austria

Online Training & Courses (England)

Caring with Confidence National (NHS) initiative seeking to provide training to 10.000 carers over 3 yearsLinked 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 LivingOnline 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

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 possibleEnthusiasm, connection with distant family, introduction to new

technology improved wellbeing and autonomy of older people, reducing need for care

Builds intergenerational solidarity

Skypecare - Hungary

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)

Care coordination

Impact analysis (micro level)Services Impacts on Informal Carer Impacts of Older Person

ICT for Independent LivingOlder personAlso for carers

- hours of care- eliminates the need for constant presence+ peace of mind- anxiety+ health-related quality of life+ reconciliation of care and work and family+ supports participation of other actors in care (family, volunteers)

+ independent living & delay dependency+ health status+ perception of safety+ compliance in treatment + improved relation carer-older person

ICT for communicationOlder person

- burden of carer+ supports participation of other members of the family (in part. Young)+ promotes volunteering

+ strengthen and develop social networks+ promotes self-support- isolation+ health status

ICT for Information & LearningInformal carer

+ accessibility to training+ caring skills and digital competence+ employability+ sense of security

+ Quality of care

ICTs for Personal Support & Social IntegrationInformal carer

+ promotes development of informal social networks of carers that provide emotional and professional support - isolation- stress+ Quality of life

+ Quality of care+ Quality of life+ Improved relation carer-older person

Savings at meso-macro level

Savings in Social care Savings in Health care

Services supporting the informal carer

1- reduces the need for support of formal care both to the carer and to the older person2- delays institutional care of older person, because carer "can cope"Examples: 1,2 : ACTION (SE): 10.000€ per family/year

3- reduces hospital admissions (because carer can provide better care and is in better health)

Services supporting Older personAlso for carers

1- delays institutional care of older person2- reduces number of care visits3- reduces overnight care stays4- improves quality and effectiveness of formal careExamples:1: Emergency Alarm (HU): - reduces 40% institutionalisation; - home care 7 * cheaper than institutional (hard to substantiate)

5- reduces hospital admissions6- reduces length of hospital stays

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)

Positive impact on health of informal carers and the care systemICT – 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.

Organisational, policy and technological innovation processes

and practices

27April 11, 2023

Drivers of development of ICT services1. 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. 28April 11, 2023

BarriersTo 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 unrealised3. 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

29April 11, 2023

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

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

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 ?32April 11, 2023

3 Mechanisms and intermediary agents  1 Transfer of experience from one locality to another by

intermediariesKey Agents small firms, third sector organisations.Little scaling, continual re evaluation and careful redeployment in

each location.

Policy rolea) 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

 33April 11, 2023

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 buildingRegional/national Policy leadership important (cost)Heterogenous players to be aligned

A mix of scaling and knowledge transfer.

34April 11, 2023

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.35April 11, 2023

What tools has STS to deal with question of scalability v. transferability?

How can these be use to advise policy and other intermediaries?

Questions

36April 11, 2023

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

37April 11, 2023

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 reportsCARICT: 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?

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

Authors :

Thank you very much for your attention!

James.stewart@ec.europa.eu

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

Impact Assessment MethodologyMicro, meso and macro levels

Dimension Micro Meso Macro

1.Quality of Life

of Informal Carer

reconciliation between care and work

E.g. Possibility to balance well care & work activities

E.g. Efficiency at workE.g. Number of carers that balance care &

work activities

social lifeE.g. Positive social contacts &

relationshipsE.g. Reduction in family

conflictsE.g. Increased social cohesion & inclusion

other dimensions of quality of life (health,

leisure etc.)

E.g. Psychophysical health & life satisfaction

E.g. Number of non-stressed carers

2.Quality of Life of Paid Assistant

E.g. Psychophysical health and independence level

E.g. Number of non-stressed carers

3.Quality of Life of Care Recipient

E.g. Physical level; Psychological level; Independence level

E.g. Number of reported cases of abuse/neglect by

family members

E.g. Target number of dependent older people

supported

4.Quality of Care provided by

Informal Carer and Paid Assistant

E.g. Improvement of caregiving activities by direct (e.g. training) or indirect (e.g. decreasing burden of carer) factors

5.Care Efficiency & Sustainability

E.g. Care efficiency (in terms of quality and cost containment)

and sustainability for care recipients and families

E.g. Efficiency and Sustainability for care

providers

E.g. Efficiency and Sustainability for Social

Protection and Care systems

6.Acceptability

E.g. Acceptability by carer and care recipient

E.g. Marketability of ICT devices (from ICT device producer point of view)

E.g. Resources of Care system to support ICT

devices (e.g. public investments in ICT)

7.Infrastructure & Accessibility

E.g. Accessibility of initiativeby carers

E.g. Availability of services (from care provider point

of view)

E.g. Availability of services (from system

point of view)

Impact Assessment Methodology - Dimensions