DREAMING Regional Conference 27th October, Barbastro, Spain Presentation by Marja Pijl EUROCARERS & AGE Platform Europe THE EXPERIENCE OF THE DREAMING ADVISORY BOARD

2 DREAMING Advisory Board What is the aim of the Advisory Board?  Witness how the system works in real life situations and discuss the technical possibilities  Which are the platform specifications? Which are the problems? What needs to be improved?  Examine the feasibility and efficiency of the technology  Does the system support older people with chronic health problems to remain at home longer; to maintain or improve their health status; to avoid unnecessary hospital admissions; to feel safer?Is it cost- and time- efficient?  Raise ethical concerns and check acceptability by users (older people, professionals, informal carers and relatives of patient)  Is there a risk for privacy? Does the system help informal carers? Do the professionals feel threatened by the technology?  Identify opportunities and challenges to wide deployment  Is there a business case? Is the system transferable to other countries? Which are the barriers? Are projects a ‘cocoon’ environment?  Review deliverables, provide advice and help in dissemination

3 Advisory Board composition  Rodd BOND: Dundalk Institute of Technology, Ireland AGE Expert Universal Access and Independent living Expert Group  Angela CLUZEL: AGE Member European Association for Directors of Residential Care Homes for the Elderly, France  Heidrun MOLLENKOPF :BAGSO, Germany - AGE Member Chair AGE Universal Access and Independent living Expert Group  Judy TRIANTAFILLOU: AGE Member Hellas, Greece  Astrid HERMAN: Klinisch Psychologe St. Franciskusziekenhuis – Belgium  Marja PIJL: Eurocares – The Netherlands  Ivana SILVA: PGEU (Pharmaceutical Group of the European Union )– EU, Belgium replaced by Claus Nielsen  Philippe SWENNEN: AIM (International Association of Mutual Benfit Societies) – EU, Belgium  Barbro WESTERHOLM: Chair AGE Health and Social Services Expert Group, MP Sweden – Sweden

4 Advisory Board (AB) – Meetings  1st AB meeting - 24th October 2009, Brussels  2nd AB meeting and pilot site visit to the Theodorus Hospiz Marzahn, Berlin - 28th April 2009  3rd AB meeting and pilot site visit to the Danish site in Langeland - 30th August 2010  4th AB meeting and pilot site visit to the Spanish site in Barbastro - 27th October 2011  Two individual pilot site visits: Estonian Pilot site in Tallinn by Ms. Cluzel German Pilot site in Berlin by Ms. Mollenkopf

Preliminary remark Don’t forget what some of the characteristics of the target group are!!!!  Old age makes people less confident about their physical and mental capacities and more hesitant to learn new skills  Relying on new machines that they don’t understand and that they do not trust 100% makes them feel unsafe  Serious health conditions add tremendously to their feeling of insecurity  They want to be sure that they can get immediate help, that they can reach medical staff in case of an emergency  If they panic they may not even remember how to properly use the new equipment 5

Are older people interested in DREAMING-type technologies? Why was it so difficult to recruit participants for DREAMING pilots and why were there so many drop-outs? We made some guesses: Difficult health conditions?  Fear of ICT? In what respect?  Lack of trust?  Lack of interest of peers?  Privacy concerns?  Unwillingness to change routines? It might be interesting to know more about the reasons for refusal, which might be caused by other factors than by ICT alone, factors, which might possibly be dealt with in other ways, like finding ambassadors (opinion leaders) among the populations where ICT could usefully be introduced. In fact, this is what the DREAMING project can contribute to.

What the AB experienced in the site visits  “What impressed us was the ability and carefulness with which the patient made her tests...She said she felt reassured with these devices...We understood that she would like to continue to have this monitoring of her health” – A. Cluzel in Estonian Pilot Site  “Mrs. I. did not seem to understand the system well because she asked, why "the eye” (teleconference) was there and what it is good for” – H. Mollenkopf in German Pilot Site  “The equipment is non-intrusive, easy to use, promotes the participation of the patient within the health care team and encourages self-management of chronic disease within a safe and supportive home environment, which I believe is an important principle in health care at all ages”- J.Triantafillou in Danish Pilot Site  “The technology seems to improve the quality of life by ensuring a better and continuing monitoring of the health situation of the patients with chronic diseases”- P.Swennen in Danish Pilot Site  The user seemed happy and we got the impression that she felt it was an improvement for her. When asked how she would feel if she would have to go back to the old routines after the project was over, she did not seem to mind very much, which might indicate that the improvement is of moderate importance to her” – M.Pijl in Danish Pilot site 7

Functionality of technology Learning what obstacles older people experience when using the DREAMING technology and how these can be overcome  Are we witnessing uncomplicated cases?  Are the technical devices usable by frailer, older persons with chronic medical conditions?  Are there categories of patients who will not have the capacity to handle the technology properly, for instance seriously demented people?  Is the equipment simple enough for people who are not used to ICT and will it be easy to use, even when the older person is in a state of panic?  Has an alternative system of communication been put into place so that the older person has quick and easy access to the medical centre in case the technology fails or the user is too confused to use it properly?  Who will handle technical issues outside the project? A huge amount of support is needed for making the technologies acceptable and working 8

The impact on professionals & carers  Has Dreaming made the tasks of professionals easier? Can they work more efficiently? is it time-efficient?do they need a lot of time to learn how to use the technology?  How will the technology influence the tasks of informal carers? will it put extra burden on the family and informal carers and alleviate the work of professionals?  Is the environment of the older person (family, care personnel) ready to adapt to the technology or do they create an extra barrier in its take-up?  Are professionals (GPs and nurses) eager or reluctant to deal with digital information.  Is the technology replacing staff and carers? Is the care personnel afraid of losing their jobs? The acceptance of the technology by professionals and carers is crucial for its wide deployment 9

Technology is NOT a replacement of human care! Older people put their trust in the staff and carers; their everyday presence is precious to them and they would not wish to have them replaced by machines at any cost. The DREAMING technology should be a valuable asset to, though not a replacement for, trained health and social care personnel, as well as probably informal carers, with the potential for reducing or minimizing the performance of some routine tasks, but at a currently unknown cost which will need to be carefully weighed against the benefits to both users, care providers and the public purse.

11 AGE Platform Europe Coordinator of the DREAMING Advisory Board Nena Georgantzi & Ilenia Gheno Rue Froissart 111 B Brussels tel. : fax : Thank you for your attention! Contact details:

ElDeRly-friEndly Alarm handling and MonitorING