Newsletter issue no 7 3 13 by EuCA

EuCaNews The Newsletter of EUROCARERS Issue no. 7 – March 2013

Dear readers,

Here we are with the seventh issue – the first in 2013 – of EuCaNews, the Newsletter of EUROCARERS (or EuCa), the European Association Working for Carers! In this issue you will find, besides the usual description of the contents of the last teleconference by the Executive Board, an overview of the agenda planned for this year’s Annual General Meeting (AGM), to be held in Dublin on 23-24 May 2013, which we hope many of you will be able to attend. The traditional overview on the latest policy developments at EU-level is followed by a series of contributions from EuCa members, which include: the success of our Bulgarian colleagues in prompting the UN to adopt a recommendation to improve care for Alzheimer’s disease in their country; a contribution on current gaps in legislation to support carers financially who live in a different country to that of the relative they would like to assist; the establishment of a UN Global Day of Parents (on June 1st); and the report of some encouraging signs of a stronger recognition for carers in Italy. The closing section is traditionally dedicated to an update of the research projects in which EUROCARERS is involved. As usual, your feedback, comments and ideas for the Newsletter are important to help us to improve it. So please do not hesitate to send us any contribution relating to your own organisation, experiences or relevant event, which you would like to disseminate to a larger audience interested in caregiving issues in Europe. Looking forward to see as many as possible of you in Dublin on 23-24 May 2013, and Happy Easter to those of you who celebrate it, Take care, Giovanni Lamura (INRCA, Italy e-mail: g.lamura@inrca.it)

Hilary Arksey (freelance consultant; e-mail: hilary.arksey@virgin.net)

Contents

Page

NEWS FROM THE EXECUTIVE COMMITTEE

Contents of teleconference on 6th March 2013

Overview of EUROCARERS Annual General Meeting (AGM) and Conference 2013

EUROCARERS’ new (first!) telephone number!

Policy developments at EU-level, by Christine Marking

CONTRIBUTIONS FROM OUR MEMBERS

Recommendations of the United Nations to Bulgaria in relation to Alzheimer’s disease, by Jivka Ticheva

Financial support for taking care of relatives in another EU country: a gap in the EU legislation? by Frank Goodwin

The Carers Companion: the 2013 Guide for Ireland’s Family Carers, by Frank Goodwin

Unpaid carers save the UK government almost 120 billion pounds a year.

A new International Day: the Global Day of Parents, by Stanislav Trnovec

More recognition for informal carers in Italy, by Licia Boccaletti

The MOMENTUM Enhanced Homecare Training Programme, by Sharon Deering

It’s a 24/7 job and it’s not easy!

UPDATES FROM RESEARCH

Overview of projects in which EUROCARERS is currently involved, by Giovanni Lamura

Update on the AIDA project, by Licia Boccaletti

Update on the INNOVAGE project, by Arieti Efthymiou

Update on the Smartcare project, by Marja Pijl

Why is EUROCARERS invited to join advisory boards of European projects? by Marja Pijl

About EUROCARERS

NEWS FROM THE EXECUTIVE COMMITTEE In this section of the Newsletter, we report the core issues discussed during the teleconferences that take place periodically between the members of the EUROCARERS Executive Committee, namely: Robert Anderson (President), Hanneli Döhner (Treasurer), Frank Goodwin (Secretary), Giovanni Lamura (Vice President Research), Stanislav Trnovec (Vice President Carers Associations) and Licia Boccaletti (N.B.: in addition, the Executive is supported by two advisers, Christine Marking and Marja Pijl). Below are brief summaries of the main items discussed during the Executive’s last teleconference.

Contents of teleconference on 6th March 2013 During the last teleconference of EUROCARERS Executive Committee, the following items were discussed: 1. Staff Matters a. Although Areti Efthymiou’s position as INNOVAGE project manager [N.B.: see also her contribution on page 16 of this Newsletter] is still not fully resolved, Frank will start making direct salary payments to her, while the longer term matters are being sorted. 2. Management of EuCa accounts: someone that we do not really know would require, at least on the first stages, an overseeing role by one of the executive members. A reasonable figure may be needed to be paid to the person in charge (3.600 - 5000 €/year) to do this task. Ideally, this would be a person who is a member of our organization with accountancy skills. After Executive members’ discussion and agreement and before the AGM, Frank will mail members on that issue. 3. EU matters: a. EU Parliament Interest Group: the next Interest Group meeting will take place on 24th April 2013 (see also Eurocarers’ website). Frank will speak there and write an email to members organizations to alert them about it, so they can approach their MEPs about funding support to attend. b. 2014 European Year for Reconciling Work and Family Life: Christine has written to Agnes, the new director COFACE, asking for a meeting and is waiting for a reply. 4. Executive Board: a. Ake Fagerberg’s position: Áke has resigned from the Executive Board; b. Website: a series of suggestions on how to improve the website were discussed, including the possibility that most relevant documents are translated into different languages. Frank will circulate suggestions about this to Executive members; c. AGM elections: there are six vacancies out of seven on the Executive Board, with Licia Boccaletti being the only person still elected. Frank believes that we need candidates with good English and commitment to share the work load. 5. AGM and Conference 2013: details of the approaching AGM were discussed (see below an overview of the AGM agenda, which has been sent by e-mail and posted on EuCa’s website); 6. AGM location 2014: It is approved to hold the 2014 AGM in Finland. Giovanni suggests that it might be appropriate to ask the Finnish carers organisation to nominate a candidate for the Executive Board election. 7. Research: There is not much new news since the last teleconference, so there are no crucial items. Giovanni suggested using part of the received funding to ask for expert advice, especially on financial aspects.

8. AOB: Certified Accounts: Frank noted that accounts do not have to be audited, but can be certified by a qualified accountant. The CEO of the Carers Association Ireland will look at the possibility of getting Eurocarers’ Accounts for 2012 officially certified by their accountant without costs. Next Teleconference will be on Wednesday, 17th April 2013 at 9am Irish time. OVERVIEW OF EUROCARERS ANNUAL GENERAL MEETING (AGM) AND CONFERENCE Location: Ashling Hotel, Parkgate Street, Dublin 8 Thursday 23th May 2013: AGM 13:00-14:00: Registration 14:00-16:00: Annual General Meeting (AGM) 16:00-16:15: Introduction of the project INNOVAGE 16:15-16:30: Break 16:30-18:00: How are CUT-BACKS effecting Carers across Europe? Presentations from selected European countries + discussion 19:15-21:00: Social event Friday 24th May 2013: CONFERENCE on New Technologies for Carers 8:30 - 9:30: Registration 9:30 - 9:45: Opening address & Chair of Conference: Robert Anderson 9:45 - 10:05: Presentation of the EU Policy Context (questions and answer session) 10:05-10:25: Overview by Kevin Cullen (Work Research Centre, Dublin) (Q&A session) 10:25-10:50: INNOVAGE: Areti Efthymiou (10 minutes presentation + 15’ discussion) 10:50-11:15: Break 11:10-11:30: Carers’ experience of alarm communication + discussion 11:30-11:50: Carers’ experience of medical communication + discussion 11:50-12:10: Presentation on Networking communication system + discussion 12:10-12:30: Open discussion with panel on “New Technologies for Carers” 12:30-12:45: Presentation of Shire Brave Awards 12:45-14:00: Lunch 14:00-15:30: Parallel workshops to map out work plan on ICT for Carers in different areas 15:30-16:00: Reports from working groups & open discussion 16:00-16:10: Summary remarks by Robert Anderson 16:10-16:30: Introduction & address by new President of Eurocarers

EUROCARERS’ new (first!) telephone number! As you know, since last November Martha Mackay joined EUROCARERS to provide support for the “AIDA” project. Martha is supporting EUROCARERS from Barcelona, where her email contact address is as follows: marthamackay@eurocarers.org. A few weeks ago, EUROCARERS decided to strengthen the opportunities for potential users to receive information and support from EUROCARERS by phone, by establishing a phone connection which Martha will answer. Here is the number ++34 93 1824913. 4

Policy developments at EU-level by Christine Marking (advisor to EUROCARERS) In this section, Christine highlights recent developments at the European policy level, providing details concerning the EU action in the field of chronic disease, and on two of the Staff Working Documents accompanying the “Communication on Social Investment for Growth and Cohesion” (also known as Social Investment Package: SPI): that on “Investing in health” and that on “Long-term care provision”.

EU action in the field of chronic disease In its Conclusions of 7th December 2010, the Council invited the Member States and the European Commission to initiate a reflection process on chronic diseases, to identify options to optimize the response to the challenges of chronic diseases and encourage cooperation between Member States. This process includes all relevant stakeholders, such as patients, professionals, healthcare payers, and providers. The potential impact on other relevant policy areas (e.g. employment, disability, education and housing, as well as ehealth) is also being taken into account. This reflection process has already resulted in an interim report which identifies two main priorities for EU action:  Chronic disease prevention and health promotion;  Chronic disease management with an emphasis on patient empowerment. One of the concrete actions coming out of the process is the launch of a Joint Action (JA) among Member States addressing chronic diseases and promoting healthy ageing across the life cycle. This JA will be one of the actions carried out under the 2013 Health programme, and will address the increased burden that chronic conditions and diseases place on health systems and individuals. Multi-morbidity will be an important element. The main objectives of this JA are to:  Examine the barriers to uptake for prevention, targeted screening of risk groups, and treatment of major chronic diseases;  Look at how to address multi-morbidity and other complex issues;  Map innovative actions in the field of social media, behavioural science, and new technologies as well as the more traditional actions on risk factors. Implementation of the Joint Action will start later in 2013. An integrated approach involving all the relevant levels will be essential to efficiently address the challenge of chronic diseases. The EU has already made efforts to promote a comprehensive approach to tackling the chronic disease burden. Some of the actions taken to date address:  Rare diseases;  Major risk factors (smoking, alcohol, unhealthy diet, physical activity);  Integration of policy and action to reduce health inequalities; 5

   

Mental health and well-being (e.g. the European Pact on Mental Health); Improved health and quality of life of older people and care system efficiencies by setting up specific initiatives (e.g. the European Partnership on Active and Healthy Ageing, a specific strategy to address dementia, partnership on cancer); Actions to compile comparable data to guide policy effectiveness; Support to public awareness-raising and disease-prevention campaigns.

For more information generally:  http://ec.europa.eu/health/major_chronic_diseases/reflection_process/index_en.htm For more information on the Joint Action: http://ec.europa.eu/eahc/health/JA_2013_chronic_diseases.html

For more information on the interim report:  interim report (223 KB) European Commission Social Investment Package: Member States to focus on growth and social cohesion On 20th February, the Commission published a Communication on Social Investment for Growth and Cohesion. The Communication is accompanied by a series of Working Documents, including one on investing in health and another on long-term care provision (see below). This Social Investment ‘Package’ calls for action in the following areas:  Simplified and better targeted social policies for sustainable and adequate social protection;  Investment in people's skills and capabilities to help them cope with social and economic challenges;  Support at critical moments throughout life. The Package aims to guide member states’ approaches to face current challenges, such as the financial crisis, increasing poverty and social exclusion and (youth) unemployment. Societal ageing and smaller working age populations also affect the sustainability and adequacy of national social systems. It also provides guidance on how the European Structural Funds can be put to the best possible use in this respect. Civil society organisations have reacted fairly positively to this strategy, which most agreed has come just at the right moment. Staff Working Document on ‘long-term care’ This document calls on Member States to take measures to increase the autonomy of people with light care needs, while providing affordable and quality long-term health care for those who requiring it. It contains an analysis of long-term care services in Europe, and proposes several 'options' for LTC systems. It focuses on proposals for several objectives:  Raising the productivity of care delivery;  Reducing the incidence and overall prevalence of frailty and disability; 6

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Reducing dependency, i.e. enabling older people to continue to manage independent living with functional limitations.

Good practices regarding 'social investment' in long-term care are also highlighted, i.e. comprehensive national approaches, prevention, rehabilitation, productivity and capacity gains through the use of ICT and quality assurance. The paper also announces the topics which will be covered by the Social Protection Committee’s working group on ageing, i.e. limiting long-term care needs through prevention, rehabilitation, and increased capacity for independent living, ensuring better access to care and securing its quality of care, maintaining financial sustainability. The paper is likely to be followed by a Communication on long-term care later this year. Staff Working Document ‘Investing in health’ This document underlines that health is a value in itself as well as a precondition for economic prosperity. The document establishes the role of health as integral to the Europe 2020 strategy, and strengthens the link between EU health policies and national health system reforms. It argues the case for smart investments for sustainable health systems as, according to the OECD, reforms in healthcare could lead to savings of some 2% of GDP by 2017. Therefore, countries should spend smarter - not necessarily more - to make their healthcare systems more efficient by investing in people's health, as health status influences social and employment participation. It also influences the financial impact on national healthcare systems. Another crucial goal is to invest in reducing inequalities in health, as average health levels have been improving but major health inequalities still exist both between and within Member States. Universal access to safe, high quality, efficient healthcare services and better cooperation between social and healthcare services, and effective actions on risk factors can help break the vicious circle of poor health leading to poverty leading to exclusion. In this respect, the Commission will produce a report in 2013 on the implementation of its 2009 Communication on inequalities in health. For all documents: http://ec.europa.eu/social/main.jsp?catId=1044&langId=en&moreDocuments=yes

CONTRIBUTIONS FROM OUR MEMBERS Recommendations of the United Nations to Bulgaria in relation to Alzheimer’s Disease Jivka Ticheva (Managing Director of Foundation Compassion Alzheimer, Bulgaria) During the session of the Economic and Social Council of the United Nations in Geneva, 49th session of the Council and the review of Bulgaria, which took place on 20th November 2012, the Foundation “Compassion Alzheimer Bulgaria” prepared an alternative report focussing on the problems that affect people suffering from dementia in this country. As a result of lobbying at the Council level and of the alternative report distributed during the session, several questions were addressed to the State representatives of Bulgaria regarding dementia, in particular with regard to what policies and treatment are available in this member state (the Bulgarian delegation being asked, among other things, why the medications are not covered financially by the public health system and why there are no policies and services). The State representatives promised that from January 2013 these medicines will be covered partially by the public health system. This is a big success! The official recommendations of the UN to Bulgaria were published in http://www2.ohchr.org/english/bodies/cescr/docs/E.C.12.BGR.CO.4-5.pdf, where you can find following, concrete recommendations for the State in our field of work: “21. The Committee remains concerned, despite the information provided on the related reform to be enforced from January 2013, about the difficulties faced by persons living with HIV/AIDS and by Alzheimer patients in accessing treatment through the social security scheme. In both cases, the Committee also regrets the absence of information on the accessibility of the relevant treatments and care (art. 12). The Committee recommends that the State party to ensure that treatment and care be available to and accessible by persons living with HIV/AIDS, and by Alzheimer patients, and that the referred treatments are effectively covered by the social security scheme.” Here below you find also the text of the suggestions formulated by the Foundation Compassion Alzheimer Bulgaria. “Suggestions for relevant recommendations in the field of coping with Alzheimer/Dementia for consideration for the Concluding Observations of the CESCR Committee for the 49th Session (12 - 30 November 2012). Information on Bulgarian context and recommendations on Article 12: The right to physical and mental health Bulgaria's budget for 2012 allocated just 4% of GDP for the health care sector, which falls a long way short of the money needed to guarantee security for the Bulgarian patients, highquality services, prevention and access to modern treatment. Over half a million Bulgarians

or a total of 582 809 people don't have the option of selecting a general physician in the village where they live and are forced to seek medical care in the closest town or city. The quality of mental health care remains a stronghold of institutionalism. Care for people with mental diseases is provided mainly in outdated institutions (hospitals, dispensaries, social services and social care homes), falling under the jurisdiction of two separate ministries (Ministry of Health and Ministry of Labour and Social Policy). All institutions work in isolation from each other, observing their own internal rules. There is no network linking these institutions and allowing for comprehensive care for people with mental health problems. Psychiatric stigma towards the people with mental diseases is a major destructive factor, undermining the lives of both mental health service users and their families in the country. It is a cause of social isolation and discrimination, and leads to violation of their human rights. Alzheimer’s disease and Dementia 100 000 people in Bulgaria suffer from Dementia and related disorders (50 000 suffer from Alzheimer’s disease). Within the whole European Union Bulgaria is among the only 3 countries where the medicaments for home treatment of people with Alzheimer and related diseases are not covered financially by the public health system. This is a very high burden for families in Bulgaria. There are no specialised health and social care professionals, nor programs and services for the sufferers of Dementia. There are no policies and services for the caregivers. For half of the affected patients, the time for accurate diagnosis varies between 6 months and 3 years, due to the inadequate capacity of the public health system. The identified gaps in this field in Bulgaria require efforts from the government to invest in health and social systems to improve care and services for people with dementia and their caregivers. Establishing national policies, programs and legislation is also in accordance with the report of the World Health Organisation and Alzheimer’s disease International “Dementia a public health priority” that calls for making Dementia a national public health and social care priority worldwide. Non-governmental organisations call for the adoption of a National Alzheimer plan by the government, according to the example of many other countries in Europe and worldwide. Recommendations for Concluding Observations in the field of Alzheimer’s disease and Dementia: 1. Ensure that the medicaments for home treatment of Dementia/Alzheimer’s are covered financially by the public health system (namely by the National Health Insurance Fund); 2. Adoption of a National Alzheimer plan or Strategy on Dementia by the State aiming to ensure adequate financial and social support, services and policy measures; 3. Ensure access to timely diagnosis, commitment to good quality continuing care and services, caregiver support and research; 4. The State should implement the necessary efforts to establish services such as day care centers for Dementia patients, information and consultation centers and to support financially the NGOs for the provision of services and social support; 9

5. The State should implement information and education campaigns for the public aimed at raising awareness, improving understanding and decreasing stigmatizing attitudes; 6. People with dementia have the right to live in the community and have access to health, social and other support services that enable them to lead full and meaningful lives within society. The State must ensure that people with dementia are accepted and are a visible part of society. For more information, please contact the Foundation Compassion Alzheimer Bulgaria: Varna 9002, Bulgaria 30, Tsanko Dustabanov street; Tel.: +359 888 870095; e-mail: compassion.alz@abv.bg; website: http://www.alzheimerbulgaria.org.

Financial support for taking care of relatives in another EU country: a gap in the EU legislation? By Frank Goodwin (Secretary Eurocarers) Recently, Eurocarers received a query regarding the possibility to receive financial support for taking care of relatives in another EU country. The question came from a German citizen living and working in Sweden – thus being officially enrolled in the Swedish Insurance system – who wished to spend a longer period in Germany in order to take care of her mother, suffering from Alzheimer’s Disease. She was willing to take a pause from work without payment, and wondered about the possibility of receiving financial support during this period. She had already checked with the Swedish Insurance system (“Försäkringskassan”), receiving the answer that both the care-giver and the care-taker have to be part of the Swedish system, in order to be eligible for financial support. A similar situation occurred recently to a Polish carer who was a student in Stockholm, as well as to an English carer who had been caring for her parents who lived in the UK for a number of years, whilst she was living and working in Sweden. Similar to the carer above, the answer she received from the authorities and a government officer who was working in the area of carer issues was that the rules apply only for relatives and carers who are part of the Swedish financial system. The same seems to apply to other EU Member States. A few years ago, a married husband and wife (both Irish), who had lived all their adult life in England, were starting to become heavily dependent on each other in their older age years. The carer partner received payment for this role, which was very helpful. At a certain point, they decided to move back "home" to Ireland, wrongly assuming that their carer payment would travel with them: it did not. To make things worse, the Irish cash-for-care system (providing carer payments) considered as eligible for these benefits only citizens who satisfy the “Habitual Residence Condition”. Since this situation is probably far from unique in the European Union - where so many citizens live in one EU country but have relatives in another EU country – we feel that this is an issue that Eurocarers might take up and pose to Members of the European Parliament (MEPs) special Interest Group on carers. In the meanwhile, if you are aware of similar situations in other EU Member States please contact Eurocarers at eurocarers@gmail.com.

The Carers Companion: the 2013 Guide for Ireland’s Family Carers

By Frank Goodwin (Secretary EUROCARERS)

In June 2013 The Carers Association - Ireland’s national voluntary organisation for and of family carers in the home - is launching the first ever FREE dedicated Handbook for Family Carers, to be titled “The Carers Companion”. The aims of this handbook are quite simple: to provide in one user friendly, easy and accessible document, a detailed A to Z of the numerous issues of concern to carers, and to help highlight the invaluable work Ireland’s Carers do on a day to day basis . The Carers Companion will cover all the relevant topics, written by experts in each field and relevant to carers nationwide. Topics include: what being a carers means, care skills, benefits of homecare, adapting the home, personal care, nutrition and diet, mobility, hygiene and infection prevention, respite care and rights and entitlements. It will also include a national directory of contacts and information broken down on a county by county basis, so that each carer can access a full list of local services. The handbook will be launched during the National Carers Week (June 10th – 16th 2013), to ensure maximum coverage. It will then be distributed to all Carers Association Centres around the country, and made widely available to individual carers. It is worth noting that The Carers Companion will be distributed free of charge, thanks to the sponsors and the companies advertising in it. Further information may be found on www.carersireland.com.

Unpaid carers save the UK government almost 120 billion pounds a year

A recent report with the title “Valuing Carers”, produced by Carers UK and Dr Lisa Buckner (University of Leeds, UK) provides interesting estimates of carers' contributions. These show that in 2011 the care provided by friends and family members to ill, frail or disabled relatives was worth a staggering £119 billion. This figure is equivalent to £2.3 billion per week and £326 million per day. The figure has risen by over a third since the 2007 estimate, which stood at £87 billion. As a consequence, carers' contributions now far outstrip the total cost of the NHS (£98.8 billion). Professor Sue Yeandle from the University of Leeds, who co-authored the report, said: "These figures indicate how important carers' unpaid contributions are to the wellbeing of our society. We know most carers want to continue care but many are doing so without the support they need and are under enormous pressure, often affecting their health and their family budget”. The full report can be downloaded from: www.carersuk.org/professionals/resources/research-library.

A new International Day: the Global Day of Parents By Stanislav Trnovec (Member of Eurocarers Executive) To celebrate the 20th anniversary of the International Year of the Family (1994), the UN General Assembly has recently established a new International Day: the Global Day of Parents, to be celebrated on 1st June, “to be observed annually, honouring parents throughout the world.” It was an initiative of the outgoing President of the General Assembly from Qatar and it has been already published in the official list: http://www.un.org/en/events/observances/days.shtml. As the UN press note says, by this resolution (see text below) the UN General Assembly “recognized that the family has primary responsibility for nurturing and protecting children. It invited all Member States to celebrate the Day in full partnership with civil society, particularly involving young people and children.” This resolution not only recognizes parents, but also “indirectly pays tribute to their efforts to foster parenting education and the need to support parents for the general well-being of families.” Therefore, it gives everyone involved in education and parenthood issues a great new opportunity to have as many initiatives as possible to disseminate this Global Day and help to celebrate and consolidate it. Further information:http://www.un.org/ga/search/view_doc.asp?symbol=A/RES/66/292.

More recognition for informal carers in Italy By Licia Boccaletti (Members of Executive; ANS, Carpi, Modena, Italy)

Something is happening in Italy these days regarding carers’ rights. First of all, a group of associations and stakeholders is promoting a class action for the acknowledgment of rights for carers. Even though maybe not all of the requests made so far can be shared, it is still very good news, as newspapers are reporting the news and have started talking about carers and the problems they face. Secondly, one of the most important Italian newspapers (“Il Corriere della Sera”) is hosting a blog named “Invisibles” which is focused on disability. In the article they published on 13th December 2012 they talked about carers, also mentioning our organization Anziani e non solo, our website on carers “www.caregiverfamiliare.it” and the Carers Day we are promoting in Carpi (Modena): http://invisibili.corriere.it/2012/12/13/hanno-cura-di-chiamano-ma-per-la-politica-non-esistono/. This gave us great satisfaction, and is a step forward for Italian carers For more information please contact Licia Boccaletti at: progetti@anzianienonsolo.it.

The MOMENTUM Enhanced Homecare Training Programme By Sharon Deering, Project Development Manager, The Caresr Assoc. Ireland MOMENTUM is a new initiative of the Irish government, which will provide free education and training projects for 6,500 job-seekers. Participants will gain relevant skills for real work opportunities in identified growth areas. One of these areas is the healthcare sector. The Carers Association - Ireland's national voluntary organisation for and of family carers in the home - was successful in securing a contract from FĂĄs (the Irish National Training and Employment Authority), to provide training to 280 participants across 14 locations and prepare them for a career in the healthcare sector under this MOMENTUM Enhanced Homecare Training Programme. The healthcare sector is an area where there are real job opportunities at the moment, and not only in Ireland. Most people want to continue to live and to be cared for in their own homes for as long as possible. Therefore, homecare services are a necessity to support family members or friends to enable that to happen. Good quality, highly trained, reliable and trustworthy homecare workers support the family carers in caring for an individual at home. Sometimes, the person being cared for may go to day-care facilities, where there is a need for highly trained care workers, too. When a condition worsens, the care recipient may need residential or hospital care. Trained care workers are essential in those environments too. The Carers Association has provided training to family carers and other learners interested in working in this area for many years. Very high standards are expected from learners, as these are the care workers who will provide care to a range of people including frail older people, people with severe disabilities, the terminally ill and children with special needs, whether that is in a home environment, residential setting such as a nursing home, a daycare setting or in the personâ&#x20AC;&#x2122;s own home. The Carers Association is also an employer of homecare workers across the country, who give the family carers a break when required through respite hours funded by the Health Service Executive (the Irish institution that is responsible for the provision of health care), through FĂĄs Community Employment Schemes or through other charitable donations or grants. We are also nominated HSE providers of Homecare Packages so we have real employment opportunities within our organisation. The MOMENTUM Enhanced Homecare Training Programme is an opportunity for learners to be trained to high standards and assessed for their suitability to progress into employment with The Carers Association. Because of the high quality of such training, however, it is expected that the learners benefiting from this programme will also be sought after by nursing homes, day-care settings and other private care agencies. For more information please consult: http://www.carersireland.com/MOMENTUM.php.

It’s a 24/7 job and it’s not easy! With kind permission from the “Irish Times” Harriet Conlon, an Irish lady who is 57, felt as if she was “stranded on an island” before she encountered the Carers Association. “I felt totally alone. I have been caring for my mum, Jenny, for 10 years. She’s 86 and she has dementia, diabetes, is incontinent, immobile and can do almost nothing for herself except eat. She can lift a fork. It’s a 24/7 job, and it’s not easy.” Conlon cared for her father until he died, earlier this year. She has siblings, but they are busy with their own families or have health issues. “I was walking through Bray one day when I saw the Carers Association. I thought they provided carers. I went in and I was so delighted they were there to help me as a carer – delighted to find someone who cared about me.” With the association she has trained to Fetac level 5 learning about health and safety for carers, as well as about disabilities and dementia. “The monthly meeting with other carers is therapy for me, keeps me sane.” The association “gives us a bigger voice with Government. They care for me, guide me,” she says. “I get the carer’s allowance of 204 Euros a week . I have sacrificed a lot, but I chose this. I don’t want Mum in a nursing home. I do feel I’ve missed out on a place in the workplace. I’ve lost friends who’ve given up trying to see me. I haven’t had a holiday in nine years, and sometimes it’s only the Carers Association that seems to notice.”

UPDATES FROM RESEARCH Overview of projects in which EUROCARERS is currently involved By Giovanni Lamura (EUROCARERS Vice-President for Research, INRCA, Italy) In the last issue of EuCaNews (n° 6) we provided an introduction to the main projects in which EUROCARERS is currently involved (in the table below see also an updated overview). With regard to three of them – AIDA, INNOVAGE and SMARTCARE – you will find below an update on recent developments, provided by those of us currently most involved in them. This section ends with some reflections by Marja Pijl on why EUROCARERS is being increasingly included in the Advisory Board of EU-funded projects. Updated overview of projects in which EUROCARERS is currently involved Title

Duration

Funding programme

EuCa contact person

Budget to EuCa (Euros)

EuCa cofunding

10 Integration of social and health care services

Dedicated staff

Focus

2.2012 - 11.2013

PROGRESS

Licia Boccaletti

51.790

12.930

Martha Mackay

9.12 - 3.2014

IPTS

Frank Goodwin

2.450

None

none

ICT-based services for informal carers

12.2012 - 11.2015

FP7-Health

Hanneli Döhner

201.960

48.600

Areti Efthymiou

ICT-based services for informal carers

SMARTCARE

3.2013 -.2.2015

ICT PSP – CIP

Marja Pijl

20.000

none

volunteers

ICT services for integrated care

Icare4EU

3.2013 - 2.2015

EAHC Health Programme

Marja Pijl

Travel costs only

None

Care for people with chronic conditions (Advisory Board only)

Renewing Health

2.2010 - 10.2013

ICT PSP CIP

Giovanni Lamura & Henk Bakkerode

Travel costs only

None

none

Telemedicine for patients with chronic conditions (Advisory Board only)

AIDA CARICT-PUBL INNOVAGE

Update on the AIDA project, by Licia Boccaletti (Member of Executive) AIDA is a Progress project, which has mainly an Italian partnership, aiming at strengthening the integration of health and social care services in order to improve the quality of assistance for frail older persons. In this project, EUROCARERS is mainly involved in leading the activities related to transferring project results at the EU level. At this stage, EUROCARERS is engaged, through its members, in animating an on-line debate on integration between social and health services across Europe. We invite all of you to join the discussion through the project forum (http://www.projectaida.eu/?page_id=14#/) or the LinkedIn group (http://www.linkedin.com/groups?gid=4736640&trk=hb_side_g). More information and project outcomes (including a soon-to-be released collection of good practices on integrated health, social and long term care services across Europe) are available on the project website: www.projectaida.eu For further information on the role played by EUROCARERS in this project, please contact Licia Boccaletti: progetti@anzianienonsolo.it. 15

Update on the INNOVAGE project, by Areti Efthymiou (project manager) As anticipated in the last issue of EuCaNews, INNOVAGE (full title: Social Innovations Promoting Active and Healthy Ageing) is a project on social innovations for older people. Among its objectives, one (as pursued by Work-Package 3: WP3) is focused on developing ICTbased services to support informal carers. Below you find more details and an invitation to get involved in it from Areti, EUROCARERS’ new project manager for INNOVAGE. A MULTILINGUAL WEB PLATFORM FOR INFORMAL CARERS: the INNOVAGE project In the last decade, ICT interventions have become more and more popular among informal carers and care professionals. Blogs, e-learning courses, telemedicine and smart homes are just a few of the web based services offered to carers. The idea of combining web based services in a multilingual web platform for informal carers of dependent older people will be implemented for the first time through the INNOVAGE project. Funded by the EU, INNOVAGE aims at developing, surveying and cataloguing social innovations that have the potential to improve the quality of life and well-being of older people. Besides EUROCARERS, the consortium includes the Universities of Sheffield (UK - Coordinator), Sheffield-Hallam (UK), Lund (Sweden), Heidelberg (Germany), Newcastle upon Tyne (UK), the Italian National Institute of Health and Research on Ageing (INRCA, Italy), the Latvian Council of Science and AGE Platform Europe (Belgium). Within the different project activities, EUROCARERS and INRCA are the project partners responsible for the development, implementation and dissemination of a web platform for informal carers, care professionals and employers in 27 EU member states, with both common contents and national-specific ones. The following carers’ needs will be addressed through the platform: information; social inclusion; reconciliation of unpaid care and paid work; training on care provision. GET INVOLVED! EUROCARERS member organizations’ assistance in the implementation and dissemination of the INNOVAGE project is crucial. You can participate in different phases of the project and through different tasks: 1) in the development/implementation phase of the web-platform: by responding to the surveys EUROCARERS will send to you, in order to investigate the needs of informal carers, care professionals and employers, as well as by contributing to developing national specific contents through your collaboration with INNOVAGE researchers; 2) in the dissemination phase of the web - platform: representatives of EUROCARERS members organizations will be trained in the use of the web platform and collaborate with INNOVAGE researchers to promote the use of the web platform to other stakeholders, informal carers, employers and care professionals. If you are interested, please send us the details of a CONTACT PERSON (name, email address) designated by your organization for this specific project, as this will help us in 16

future communications with you. We look forward to discuss this exciting project with you at the next AGM on 23-24th of May in Dublin! For more information please contact: Areti Efthymiou: areti@eurocarers.org or Frank Goodwin: eurocarers@gmail.com

Update on the SMARTCARE project, by Marja Pijl (advisor to Eurocarers) In the following, Marja Pijl provides us with an update on this project, which was outlined in the last issue of EuCaNews. The kick-off conference of the SmartCare project took place in the beginning of March and lasted 5 days, because it is a huge project. It consists of pilot studies that will be carried out in a number of regions, trying to realize a delivery of services that cut across the usual health and social care domain boundaries, with the help of ICT. For this purpose, pathways will be designed that are meant as models for the service flow in which various actors are involved. This will be done with the help of ICT. The project partners are regions, but in each region there are many stakeholders involved, because the pilots are supposed to cover a broad cross section of the health care and social care policy makers and providers. The results of the project are meant to be used after the project has ended, and it is expected that they will be implemented on a large scale. That is why the core partners are regions and not local agencies. There are four lead regions that will make a start (to be followed by six more regions; later, there is the possibility for even more regions to join), which are: Southern Denmark, Scotland, Aragon and the Friuli Venezia Giulia Region. All four regions have had previous experiences with ICT projects. During the kick-off meeting a lot of technical aspects were discussed, including the evaluation process. Towards the end of the conference the regional project partners met in small groups to make a plan of how to get their pilots started. It is the intention of the project to take as a starting point what has already been developed in each region, and that will mean that the pilot sites will look quite different. Southern Denmark has chosen to work on integrated pathways for persons with heart failure upon discharge from the hospital. They already have extensive ICT programmes in place that they can use as a starting point for the development of a programme for integrated services. Scotland used the time in the working group to map all the agencies in a particular region involved in the prevention of falls. It was amazing how many there were! They have not yet managed to discuss the ICT to be used in this process. The Friuli Venezia Giulia region described the pathway of service delivery of the healthcare and social care agencies after discharge from hospital, but as yet they do not seem to have any thoughts about how to use ICT to try to integrate these services. The Aragon delegation had already left and therefore could not present their plans. The User Advisory Board of SmartCare will be composed of representatives of AGE Platform Europe, Eurocarers, the European Federation of Nurses Associations (EFN), the European Patientsâ&#x20AC;&#x2122; Forum (EPF) and the International Foundation for Integrated Care (IFIC). The Advisory Board will be coordinated by AGE and hold meetings more or less 17

every half year during the course of the project. AGE will develop a briefing document that will set out a detailed work programme and describe the tasks to be achieved by the Board. It is envisaged that the Advisory Board will provide continuous support to most Work Packages throughout the life cycle of SmartCare and have discussions with the project management team. Most likely, one or two workshops will be organized at national level, so that the members can see the pilots at work. There will be a final conference that will deal with the dissemination of the outcomes of the project. For further information please contact Marja Pijl: marja.pijl@socialpolicy.nl.

Why is EUROCARERS invited to join advisory boards of European projects? By Marja Pijl (advisor to Eurocarers) The presence of EUROCARERS on the Advisory Board of the SMARTCARE project is no isolated case, as we have been called to play this role already for the RenewingHealth project (where Henk Bakkerode has been providing input on behalf of EUROCARERS) and, starting from this March, for the ICARE4EU project (on which you will find further information in the next issue of the Newsletter). Why this increasing number of requests asking EUROCARERS to be part of European projectsâ&#x20AC;&#x2122; advisory boards? We should consider that the European Commission (EC) invests a great deal in European-wide projects in many fields, among them health, research and ICT (Information and Communication Technology). The EC is not only interested in the scientific outcomes of these projects, but also wants to make sure that the products which are being developed with the financial support of the EC are useful for end-users. Therefore, the projects are asked to involve end-users in the development process and one way of achieving this is to invite representatives of organizations of potential end-users to serve on an Advisory Board. The task of such a Board is to critically follow the process, and reflect on the potential of the product for the target group it represents. For instance, when new devices are developed to monitor the health of frail older persons electronically, organisations of older persons are invited to participate in an Advisory Board and look at such questions as: are the devices easy enough to handle for the older person? What do these devices mean for the privacy of the older person? Do these devices really facilitate the contacts of the older persons with their doctors and nurses and if not, how can they be improved? Now the EC better understands how important carers are in the entire caring process, Eurocarers receives more and more invitations to join Advisory Boards in order to advise from a carersâ&#x20AC;&#x2122; point of view. The organisations of end-users are not only expected to present their reflections while the projects are being carried out, they are also expected to help with the implementation of the results.

About EUROCARERS EUROCARERS was officially established in Luxembourg in December 2006. Its origin lies in two European networks: Carmen, a network on integrated care and Eurofamcare, a research network on carers of older persons. In the Carmen project researchers, practitioners and policy makers, among them representatives of the carers’ movement, found each other and came to the conclusion that it was time for carers to be heard at European level. The Eurofamcare network - consisting of researchers who mapped the situation of carers of older persons and the policy measures developed for this category in the EU and who did quantitative research on the support of carers of older persons in six countries - also diagnosed a strong need for carers to make themselves heard in Europe. Representatives of the two networks and other interested persons met in Maastricht in 2004 on the initiative of NIZW, the Dutch Institute of Care and Welfare (later reorganised into the two organisations Vilans and Movisie), to discuss the feasibility of establishing a European organisation and decided to go ahead with this task. Christine Marking had written a preparatory paper which helped those who met in Maastricht in formulating decisions about some crucial issues. An interim board was established consisting of: Brigid Barron, President; Patrick Michielsseune, Treasurer; Marja Pijl, Secretary; and the following other members: Judy Triantafillou, Isobel Anderson, Hanneli Döhner, Caroline Glendinning and Henk Nies. Several working groups were formed. Geraldine Visser and Nicoline Tamsma made a report of the meeting. Several meetings took place in the following months and some activities were already developed before EUROCARERS was formally registered in Luxembourg at the end of 2006. Since then the association has increased remarkably, especially in the last year, and includes now over 60 organisations and several individual associates from all 27 European Member States. Members of the current (2011-13) Executive Committee are: Robert Anderson (President); Stanislav Trnovec (Vice-President - Carers organisations), Giovanni Lamura (VicePresident - Research); Frank Goodwin (Secretary); Hanneli Döhner; Licia Boccaletti. The association can also count on the support of two advisers: Christine Marking and Marja Pijl. For more information on the members of the Executive Committee: http://www.eurocarers.org/about_executive.php. For more information on the aims and guiding principles of EUROCARERS please go to the link: http://www.eurocarers.org/about.php. EUROCARERS key contacts: EUROCARERS, 23 Ranelagh Road, Dublin 6, Ireland Phone: 0034-93-1824913 Email: eurocarers@gmail.com Webseite: www.eurocarers.org EUROCARERS is an NGO & non-profit organisation registered in Luxembourg in 2006 (registration no. F6854). Date of going to press: 22nd March 2013