The Potential of ICT in Supporting Domiciliary Care – The Carer Perspective. The case of Germany

1. The Potential of ICT in Supporting Domiciliary Care – The Carer Perspective. • The case of Germany • Heidrun Mollenkopf, Ursula Kloé, Elke Olbermann & Guido Klumpp Brussels, January 19th, 2010 Workshop "Long-term care challenges in an ageing society: the role of ICT and migrants "

2. The German Team Dr. Guido Klumpp Executive Director of the German National Association of Senior Citizens’ Organisations (BAGSO) Ursula LenzPress officer (connections with member organisations) Dagmar KratzChief accountant (administrative and financial organisation) Dr. Heidrun Mollenkopf Sociologist and gerontologist. Member of the BAGSO Expert Council. Former Senior researcher at the German Centre for Research on Ageing at the University of Heidelberg. Ursula Kloé Social Researcher / Market Researcher /Consultant on behalf of industry and market research institutes. Self employed. Dr. Elke Olbermann PhD in Sociology, Senior Researcher at the Institute of Gerontology, Technical University of Dortmund

3. The Potential of ICT in Supporting Domiciliary Care Overview: • The context of ageing and care in Germany • ICT initiatives: interesting cases (Service Provider / Senior Centre) • ICT in domiciliary care • Research and policy implications

4. Approach, Tools and Sources • In order to elaboratethe study, we used a • multi-methods approach • Desk research (scientific literature, policy reports, projects,media, web sources) • Investigations based on questionnaires (mail expert interviews) with persons involved in the organisation of domiciliary and institutional care; • In-depth (personal or phone) interviewswith outpatient care service providers andprofessional care workers (with and without migration background) • In depth (phone)interviewswithpersons working in R & D projectsaddressing ICT in care. • In-depthpersonal interviews (case studies) with informal caregivers • (with and without migration background)

5. (1) The Context of Ageing and Care in Germany Table 1. People in need of care 2007 (number, settings and level of care) • 68% of the people in need of care are getting care at home • Outpatient care in Germany is largely provided by private and non-profit organisations (98%) • Most care personnel is female and working part-time Source: Pflegestatistik 2007. Pflege im Rahmen der Pflegeversicherung. Deutschlandergebnisse. Statistisches Bundesamt Wiesbaden, 2008.

6. The German Social Long-term Care System • Main characteristics • Organisational and financial segregation of Health care and Long-term care • LTC: • Benefits dependent on 3 grades of dependency • Legal separation of formal and informal caregiving • Separation of medical treatment and care assistance/home help • Benefits in kindor in cash for self-organized support • Nursing aids and technical aids • Support of family caregivers (Professional domestic care in the absence of caregivers, unpaid leave) • The German Health Care / Social Long-term Care System is characterized by fragmentation & lack of integration and transparency.

7. (2) The Contribution of ICT in Domiciliary Care ICT initiatives: interesting cases • 'Viertes Viertel'Senior Centre Güstrow • 'SOPHIA' Service Provider

8. Interesting cases (1): Senior Centre Güstrow 'Viertes Viertel' Foto source: Bundesministerium für Familie, Senioren, Frauenund Jugend (BMFSFJ) (2008). Das intelligente Heim. Ablaufoptimierung, kurze Wege, Entbürokratisierung. Bericht über das Modellprogramm. Berlin: BMFSFJ, page 54ff

9. Interesting cases (1): Senior Centre Güstrow 'Viertes Viertel' • Although an institution, there are interesting starting-points for future developments to support domiciliary care: • Leading idea: 'living together'like at home. • Single rooms / high flexibility with furniture to create a feeling of being at home • In every house unit: 11 inhabitants + 4 'care assistants present' (Pflegepräsenzkräfte) • Care workers for persons in need of health care • Innovative technology to support independence and safe everyday life • Household appliances, e.g., induction cookers and steam ovens • Intercom system with several call- and question/answer-possibilities • access control, smoke/fire detector) in private homes with link to the service office. • Positive experiences if older persons are guided and trained.

10. Interesting cases (2): Service Provider SOPHIA Phone or TV TV Personalcontact Foto source: www.sohia-nrw.de SOPHIA is a Franchise System, growing all over Germany

11. Interesting cases (2): Service Provider SOPHIA Service system for persons who want to stay at home 6 Packages:Basis – Safety – Home security – Comfort – Family (Costs between 21 € and 50 € per month) • Availability: 24 hours a day, 7 days a week • Covering a wide range ofneeds • Organisation of outpatient care or craftsmen / Mediation of supporters / suppliers • Personal 'godfather'for every participant (based on voluntary work – some of them with migrant background) • Calls at least once a week to chat and to check necessary tasks to be done • Use oftelephone + TV as well as innovative ICT • TV / PC for video communication to connect people with the outside world • Safety devices like emergency bracelet/watch / alarm system / smoke / fire / water detector. • Despite diverging openness: Users show overall satisfaction.

12. Interesting cases (1 + 2): Main findings • In the beginning, older people showdistance towards innovativetechnology, but --- • --- older people are happy to use technologies • if technologies address their needs • if technologies are accompanied with social attention and support • if the older people receive the necessary training. • First attention and contact mostly through (younger) relatives --- • --- Family carers are relieved of parts of their burden. • Technology has the potential to support home care in favour of all persons concerned.

13. (3) ICT in Domiciliary Care: Consultation of Experts Experts' (care workers') interest and use of ICT High interest in innovative ICT especially for organisation and documentation(mobile units with connection to central unit) General use of Internet for information about care / health problems / legislation / professional issues etc. Advantages: Fast communication, saves time, permanent availability, reduces bureaucracy, releases time for care Consequence: Centralization of kowledge. Barriers • Low readiness to inform oneself before being in need of support / care • No knowledge about possibilities and costs / funding possibilities • Fear of being dependent on or not being able to use technical device • Use of technology is seen as acknowledgement of needing support Older people

14. Experts' Comments: Barriers Barriers • Lack of information / time / money for selection and installation • Limited opportunities for information, counselling, training • Lack of adequate training material (e.g., in mother tongue) • High fluctuation of empoyees • Lack of interest and lack of acceptance of ICT Care Services • Difficulties to train employees adequately • Difficulties in using appropriate ICT • High concentration on human services • Innovative ICT has to go on from what people already use or know. Consequences

15. ICT in Domiciliary Care:Informal Caregivers. General situation of carers with migrant backgrounds • High legal insecurity • Reduced social rights • Great variety of tasks • Irregular working hours • Little leisure time • Limited social networks. High regard of tasks performed in home care Family caregivers as well as outpatient care providers consider the tasks that migrant care workers perform in home care essentialfor the well-being of the people in need of care.

16. Informal Caregivers. Overview (1) Woman from ... Sociodemo-graphy Education Residence in Germany Care career / status

17. Informal Caregivers. Overview (2) Woman from ... ICT in care households/ private use Requests / ideas for ICT

18. Summary: Informal Caregivers' Requests / ideas for ICT • Informal caregivers: General trends • High level of education • Trend to legalisation and professionalisation Requests and wishes for ICT: • Easy to use mobile phonefor older persons • GPS system for persons with dementia • ICT for communication (via internet) and coordination of tasks (with doctor, care workers, relatives of person to be cared for); • Internet access for information about care / health problems / behaviour in case of emergency / cultural peculiarities. • e-learning:German language, issues related to domiciliary care (Condition: training and communication possible in mother tongue). Family carers are more concerned about offering suitable ICT solutions to care recipients while (migrant) care assistants are more concerned about improving quality of their work.

19. (4) Conclusions: Requests for ICT Development & Training Conclusions & recommendations (1) • Equipment with more modern ICT depends very much on the interests, openness and competences of the principal actors. • Innovative ICT has to go on from what services already use / employees know / older people are acquainted with. General • Education / vocational training should integrate the use of innovative ICT Education • Time and opportunities for learning has to be provided • Concrete (mother tongue) information in the Internet about home care and potential technical support is needed • Adequate multi-lingual training material has to be developed. • Raise general awareness, de-taboo the issues of care, illness & dementia Awareness • Information campaigns in television and internet.

20. Conclusions: Requests for ICT Development&Policy Actions Conclusions & recommendations (2) • Improve technologies and systems ICT • Overcome barriers arising from unsuited design • Avoid stigmatising technologies • . Develop ICT and technical applications that are independent of language. • Create more transparency / overcome the fragmentation of responsibilities related to System • Health care & Long-term care system / legal regulations • Reimbursement possibilities and conditions. Organisation • Create a centralised / systematic/ multilingual online platform • addressing all of these issues + providing information about available technologies / services / possibilities of support. • Legalise the societally important work of caregivers from migrant backgrounds. Legalisation