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EuCaNews

The Newsletter of EUROCARERS

Issue no. 8 – July 2013

Dear readers,

Here we are with the eight issue – the second in 2013 – of EuCaNews, the Newsletter of

EUROCARERS (or EuCa), the European Association Working for Carers! In this issue you will

find – in the usual three different sections focused on communications from the Executive, news

from our members and updated from research – first of all an overview of the newly elected

Executive Committee, with a brief bio-sketch of its three new members. This is followed by a

summary of the most relevant topics discussed at the last Annual General Meeting (AGM) and

the usual update on EU-policy developments. Among the contributions coming from our

members, we can highlight those focussing on a new line of research on human resource

management for informal carers at the University College of West Flanders (Belgium), and those

commenting the impact of financial cut back on carers in different countries. In the section

dedicated to research, besides the usual updates on already started projects, you will find a

description on the positive begin of the ICARE4EU project.

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.

Happy summer holidays for those of you who are going to have them, Take care,

Giovanni Lamura & Hilary Arksey (INRCA, Italy (freelance consultant; e-mail: g.lamura@inrca.it) e-mail: hilary.arksey@virgin.net)

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Contents Page

NEWS FROM THE EXECUTIVE COMMITTEE 3

The new Executive Committee 3

A note from the newly elected president on the AGM (Annual General Meeting), by Frank Goodwin

5

EUROCARERS networking activities 6

Other news from the Executive 7

EU policy developments, by Christine Marking 8

CONTRIBUTIONS FROM OUR MEMBERS 10

Designing a human resource management for informal caregivers: a new line of research at University College West Flanders (Belgium)

10

Developments in Poland in the field of care allowances, by Joanna Szyszkowska 11

A selection of useful resources on young carers 11

Effects of cut backs on carers: situation and campaigns in Ireland and elsewhere, by Frank Goodwin

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Effects of cut backs on carers in Finland, by Haino Malla 12

Carers week in the UK and Ireland in June 2013 12

Report on family caring in Ireland 13

UPDATES FROM RESEARCH 14

Overview of the projects in which EUROCARERS is currently involved, by Giovanni Lamura 14

Update on the AIDA project, by Licia Boccaletti 15

Get involved in the INNOVAGE project, by Areti Efthymiou 15

Positive start of the ICARE4EU project, by Marja Pijl 17

About EUROCARERS 19

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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. First of all, however, we are going to briefly present its members, as during the last Annual General Meeting (AGM) hold in Dublin on 23-24th May six of the seven executive positions coming to an end of their term were subject to election. The new Executive Committee The newly elected Executive Committee is now composed as follows: Frank Goodwin (President), Hanneli Döhner (Vice President Carers Associations), Giovanni Lamura (Vice President Research), Licia Boccaletti, Marijke Steenbergen, Helle Lepik and Marja Tuomi. In addition, the Executive is supported by two advisers, Christine Marking and Marja Pijl. Underneath the pictures of all nine members, you find short profile describing the three new members of the Executive (Helle Lepik, Marijke Steenbergen and Marja Tuomi). For a more detailed description of all members’ profiles, please go the EUROCARERS website http://www.eurocarers.org/about_executive.php.

Frank Goodwin

(President)

Hanneli Döhner

(Vice President Carers Associations)

Giovanni Lamura

(Vice President Research)

Licia Boccaletti Marijke Steenbergen Helle Lepik

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Marja Tuomi Christine Marking

(Adviser)

Marja Pijl

(Adviser)

Here you find a brief profile of the three new members of the executive. Helle Lepik (Estonia): graduated from Tallinn Pedagogical University in 2002, achieving a

Master of Arts in Social Sciences. After additional studies in Finland, Sweden and Denmark, she

worked in social affairs since the renewed independence of the Republic of Estonia in 1991,

acting in the local government as director of a social agency and as lector in universities (Tallinn

University Pedagogical College and Tallinn University). In the last 8 years her main work has

been focussed on the Association of Estonian Cities, especially with development organizations,

the Estonian Regional and Local Development Agency (ERKAS), and organizing training

programmes for local governments employees, as well as for informal carers who are providing

essential home care supports to people with long term illnesses and disabilities.

Helle Lepik has founded and led several social non-profit organizations and worked for years as

volunteer in those organizations. Since 1996 she has put together and led also different

development projects in social affairs, including international ones. She Took part in the

workgroup which prepared the first national Social care law (passed in 1995 and running with

some improvements still today). She is elected member of the committee of elderly policy, a

body which is an advisory committee of the Minister of Social Affairs.

Helle Lepik is founder and board member of the NGO “Estonian Carers”, which is active since

the spring of 2011. In autumn of the same year, her leadership and initiative, the first Forum of

Estonian Carers took place. In 2012 she initiated the first Informal care development plan of

Estonia, whose final version, thanks to the joint-work of several social organizations and

universities, was finished at the beginning of 2013.

Marja Tuomi: Doctor of Social Sciences, she is the new CEO of the Central Association of Carers in Finland as of August 2013. She has long and broad experience in health and social sector development work and she is familiar with the health and social security systems of several European countries. Her doctoral work concerned the diffusion of social innovations and the factors influencing their adoption and diffusion. Her doctoral thesis is available on the web (click here for the weblink. Marja’s deep knowledge on these issues could benefit EUROCARERS in utilization of the good practices developed and tested in the

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field of informal care as well as in dissemination of these practices more widely among the member organisations. Marja has also extensive experience in design and management of international projects. Marijke Steenbergen: she studied social-cultural sciences at the Utrecht University. After finishing her MA degree. she was employed as a researcher and teacher of organization and policy studies at Utrecht University. Her specific field of interest was direction and change in the not-for-profit sector. In 1994. she completed her PhD on the consequences and meaning of the quest for more coherence and cooperation in the Dutch care system. Having worked for 10 years at the University, she moved towards a new career in 1997. She became director of the Schakels Foundation: a consulting and support function in the broad field of welfare and care in the province of Utrecht. In 2001 she became CEO of the Foundation Volunteers Management and, after a merger, CEO of CIVIQ, a national knowledge institute on volunteer work (approx. 75 employees). At the beginning of 2007 CIVIQ became part of MOVISIE, Netherlands centre for social development. Marijke Steenbergen is CEO of this national knowledge institute and consultancy (where some 150 employees worked in 2013), which has a focus on civil society, care and social wellbeing. MOVISIE aims to contribute to a society in which people are empowered to full capacity. A note from the new elected president on the AGM (Annual General Meeting) by Frank Goodwin The EUROCARERS AGM and Conference were well attended and seen as successful events by participants. There were approximately 60 people present with representatives from 13 countries, including a strong Irish contingent. On the Thursday evening, after the AGM we shared good company and an enjoyable meal together, in the Powerscourt Townhouse restaurant, called Pyg (Pygmalion). While the AGM was about routine matters and a quorum was present, a number of matters needing our attention were noted. The overarching goals for 2013-2014 of EUROCARERS are: to increase awareness of the need to support carers in policy and practice; to contribute to the 2014 European Year, topic not yet finalized; to find ways to secure sustained funding; to ensure carers issues as a theme in the 2014 EU Parliament Elections.

Besides these goals, four areas were identified as those deserving most attention from our organisation in the coming year: 1. INCREASE AWARENESS: This will continue to be achieved through our engagement

with the Commission and the Parliament Interest Group of MEPs (Member of European Parliament) on carers;

2. EU YEAR 2014: EuCa will ensure that carers interests are recognised within the context of the year’s topic, which will be decide within the next week;

3. FUNDING OF EUROCARERS WORK: Due to the work of many members, over the past seven years, within the Executive Boards, our advisers and key members not in the Executive but actively supporting our work, the volume of work has grown dramatically.

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This work includes invitations to make submissions, make responses, attend and participate/present carers perspectives at consultative meeting of the EU Commission. In addition, many NGO and researchers seek our views and participation in projects relevant to carers. Carers are now seen as key stakeholders in a wide variety of work taking place both at EU Commission and NGO levels. We also welcome the work of some members who are actively forwarding the interests of carers through their national work, and from there to the wider EU level engagements. We are now at a stage where EUROCARERS needs a paid secretariat, at least part time. This issue is a priority for the Executive Board for the rest of 2013 and 2014., hopefully delivering our target within 2014. EuCa needs to explore urgently the possibilities to raise funds and/or work in kind from within our membership, and at the same time seek funding support from private sector and philanthropic groups;

4. It is our intention to work with members to devise a shared pre-election message to those seeking election to the EU in 2014. We plan to work on this over the summer months, to have it available to members in September.

Robert Anderson (past President) informed the AGM that: During the last years the visibility of carers and particularly informal carers has

increased in the European policy debate on health, ageing, employment and social policy. For instance, one of the main policy initiatives in the area of employment – the Employment Package - specifically refers to the need of promoting formal employment in household services in part to support informal carers;

Furthermore, last February the Commission published a series of policy documents – e.g. the Social Investment Package (SIP) – which explicitly refer to carers (specifically in a special document addressing long term care). A number of new EU research projects also address informal carers. EuCa has worked hard to ensure that carers are represented either in research and dissemination activities, e.g. in projects such as SmartCare, INNOVAGE and AIDA. The outcomes of these projects will be very useful. For example, the INNOVAGE project will produce a multilingual website for carers.

The influence of carers in different projects is increasing. Madeleine Starr announced that the next International Conference will be in May 2015 in

Gothenburg (Sweden), co-organised by the Swedish National Family Care Competence Centre

together with Carers UK. It might be practical to combine this with that year’s EUROCARERS

AGM. The next AGM in 2014 will take place in Finland. The Central Association of Carers, will host the meeting in Helsinki.

EUROCARERS networking activities Recently EUROCARERS has strengthened its networking activities, by joining two relevant European networks. The first one is “Social Platform”, the Platform of European Social NGOs, which is the largest federation of European rights and value-based NGOs working in the social sector. Currently EUROCARERS has opted for the status of associate member, in order to check whether the benefits of being part of such platform can justify the further step of becoming a full member (with voting rights). For more information on the Social Platform please consult: http://www.socialplatform.org/

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The second initiative joined by EUROCARERS is the EUROPEAN INNOVATION PARTNERSHIP on Active and Healthy Ageing (EIPAHA). This is a broad spectrum initiative run by the European Commission to support the achievement of the aim to increase the average healthy lifespan in the EU by 2 years by 2020. Three dimensions are seen as crucial to pursue this goal: improving the health and quality of life of Europeans, with a focus on older people; supporting the long-term sustainability and efficiency of health and social care systems; enhancing the competitiveness of EU industry through business and expansion in new markets. Within this partnership, EUROCARERS has joined three ACTION Groups: Integrated Care (B3); Independent Living (C2) and Age Friendly Environments (D4).

For more information on the EUROPEAN INNOVATION PARTNERSHIP on Active and Healthy Ageing (EIPAHA) refer to: https://webgate.ec.europa.eu/eipaha/index/aboutus.

Other news from the Executive:

Next Teleconference will take place on Wednesday, 11th September 2013, at 10am (Central European Time);

EUROCARERS’ 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 e-mail contact address is as follows: marthamackay@eurocarers.org. A few months 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;

EUROCARERS is now also on Facebook! Here you can get in touch with

EUROCARERS via Facebook:

https://www.facebook.com/EuropeanAssociationWorkingForCarers;

Please remember to insert the EUROCARERS logo and weblink in your own organisation’s homepage! We kindly ask all EUROCARERS members to update their own website links to include the EUROCARERS logo and weblink (see below) on their home website (or any other suitable area of their website), as this would provide a stronger message of unity across Europe to fight for carers’ needs at EU and national level. Here you find the EUROCARERS logo and the weblink:

WEBLINK: http://www.eurocarers.org/index.php

LOGO:

Thank you!

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EU policy developments by Christine Marking (advisor to EUROCARERS) In this section, Christine highlights recent developments at the European policy level, providing details concerning the Commission’s position on challenges posed by mental health, the OECD reports on long-term care and the Commission’s report on social protection expenditure during the crisis. Commissioner Borg addresses EUFAMI annual conference On the occasion of the annual conference of the European Federation of Families of People, Health Commissioner Borg stated that mental illness represents one of the major health challenges in the EU today. A 2010 Commission survey on mental health shows that 15% of the respondents had consulted a health professional for an emotional or psychological problem. The burden resulting from mental disorders is often under estimated, in terms of human suffering for patients and their families, quality of life, life opportunities and lost human capital, as well as in terms of economic costs. The strain on people's mental resources has increased through changes in lifestyle, at the workplace and in society. The economic crisis further increases this stress. The Commission has taken various actions in this area: The 2008 European Pact for Mental Health and Well-being, promoting cooperation

between Member States and between EU-policies; In February this year the Commission launched a Joint Action on Mental Health and

Well-being under the EU Health Programme. The joint action brings together 24 Member States to review knowledge; analyse the "mental health" situation in different countries; issue recommendations; and agree upon a common framework of action on mental health;

The Joint Action will focus on depression, eHealth, community-based and socially inclusive approaches in mental health, mental health at the workplace and schools and mainstreaming of mental health in relevant policies;

The European Month of the Brain; Occupational safety and health; EU regional and social policies allow Member States to use the structural funds to co-

finance the transition to community-based mental health services. Finally, the Commission supports public health and research projects on how to address and prevent mental disorders, and promote positive mental well-being. The Commissioner also stressed that the Commission is ready and committed to cooperating with Member States, to support families and carers through adequate social and health services. He underlined that all activities undertaken in the health field should be seen as an investment. The Social Investment Package, released in February this year, presents the potential of investment in good mental health to prevent future high economic and social costs. For the full speech: http://ec.europa.eu/commission_2010-2014/borg/docs/speech_24052013_eufami_en.pdf

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OECD reports on long term care On 15 June, the OECD has published a report entitled ‘A Good Life in Old Age? Monitoring and improving quality in long-term care’. The report was sponsored by the European Commission, and was released during a conference on prevention of abuse and neglect of older people. The report underlines the importance of the high quality care services in the context of the global ageing population. Examples given from different European countries and the United States showed that the quality assurance scheme vary greatly. The document, which is structured in three major parts, highlights aspects as the necessity of achieving quality of the long term and the importance of the targeted policies. Effectiveness and care safety, patient centeredness and responsiveness and care co-ordination are elements generally accepted as critical to quality care. The fastest-growing age group are people over 80 whose number will almost triple by 2060, rising from 4.6% of the population to 12% in 2050 in the European Union. It is estimated that up to half of them will need help to cope with their daily activities. Yet even today, families and public authorities are struggling to deliver and pay for high-quality care to elderly people with reduced physical and mental abilities. However, the report shows that very few countries systematically measure whether long-term care is safe, effective, and meets the needs of care recipients. To meet future demand for higher-quality care and choice by the person receiving care, governments should ensure that the necessary information on long-term care quality is available to the public. England, Finland, Germany, Ireland and some other countries do this now, allowing users to compare the quality of different care providers For more information on the elder abuse conference: http://ec.europa.eu/health/ageing/innovation/index_en.htm For the report: http://www.oecd.org/els/health-systems/good-life-in-old-age.htm Social protection budgets in the crisis: Commission publishes working paper The Commission has published a working paper reviewing developments in social protection expenditure during the crisis. This focuses on spending trends following the peak of the crisis (2009), on changes in income distribution and on the impact of austerity packages. For the report: http://ec.europa.eu/social/main.jsp?catId=738&langId=en&pubId=7575 For all documents: http://ec.europa.eu/social/main.jsp?catId=1044&langId=en&moreDocuments=yes

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CONTRIBUTIONS FROM OUR MEMBERS

DESIGNING A HUMAN RESOURCE MANAGEMENT FOR INFORMAL CAREGIVERS: a new line of research at University College West Flanders (Belgium) The increasing life expectancy, the aging population and the decreased fertility rate force us to consider the future organization of health care in Western society. Because of the increasing number of care recipients and the limited capacities of our care institutions, the focus will, perforce, be more and more on home care and informal caregiving. Over the past few decades, the profile of the informal caregiver has changed considerably. In the past, besides the female partner, it was mainly the daughter who adopted the role of informal caregiver when help was needed. This was strongly related to the more intensive labour activity of the male population. With the prospect of a shrinking working-age population, increasing the labour-force participation and raising the employment rate of women is paramount for the European Union. Men and women should both be active on the labour market. By raising the age of retirement, the higher participation rate of women in the labour market and the increased care needs, more and more people will be forced to take on the care of a beloved one and remain employed. A tailored human resource management can enable informal caregivers to remain working while taking care of the care recipient. Supported by the European Social Funding (ESF Agency), the research centre informal caregiving of University College West-Flanders (Bruges) is setting up a new research field. An informal caregiver-friendly human resource management will be created in cooperation with several profit and social profit companies. The innovative results will enable other companies to develop a tailored human resource management adapted to the needs of the informal caregivers. The duration of the project is 2 years, plus 1 year for dissemination year. For more information about this project please refer to: University College West-Flanders (Howest), Research Centre Informal Caregiving Rijselstraat 5 B-8200 Bruges; contact persons: Kurt Debaere (e-mail: Kurt.Debaere@howest.be, tel. +32498 11 24 38) or Herlinde Dely (e-mail: Herlinde.Dely@howest.be tel. +32477 63 26 69).

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Developments in Poland in the field of care allowances Joanna Szyszkowska (chairman of the European Care Fundation)

On 14th

May 2013 the draft bill concerning aid to dependent and disabled people was presented

at the Polish Parliament by senator Mieczysaw Augustyn. One of the postulates of this bill is to

provide dependent and disabled people with vouchers to be used to meet care needs.

Unfortunately, if approved, this measure will take place at the expense of the attendance

allowance, which is now received by each person after the age of 75 (and mostly allocated to buy

medications). The government wants to cancel the attendance allowance and give the vouchers

instead, but to fewer people. As a result of the bill, even the people in need (in case they have an

average income of over 700 zloty per person in one household, i.e. of roughly 162 Euros per

month) won’t get the voucher. This will therefore cause a further impoverishment of older

people.

Here you can watch a short video (less than 7 minutes) which illustrates the state of care in

Poland (it’s in Polish with English subtitles). The family presented in the film, with an income of

3000 zloty per month altogether (i.e. about 700 Euros) is too rich to get a voucher, despite the

fact they spend over two thirds of their budget on care:

http://www.youtube.com/watch?v=qHlOs95aVis.

For more information on the European Care Foundation and its work please consult

their website: http://www.opiekunowie.pl/en/. A selection of useful resources on young carers The TOYAC (TOgether for Young Adult Carers) project - a project funded under the LLP-GRUNDTVIG programme focused on the development of strategies and services for young and adult carers (YAC) – has started developing a selection of interesting resources on young carers, which can be found under this link: http://www.youngadultcarers.eu/?page_id=12. For more information about the project consult its home page: http://www.youngadultcarers.eu/

Effects of cut backs on carers: situation and campaigns in Ireland and elsewhere By Frank Goodwin The Carers Association Ireland is currently campaigning against cut backs affecting carers. For an overview of how this initiative is taking place please consult the weblink: http://carersireland.com/givecarersabreak.php. Also during the last AGM the issue of how cut backs are affecting carers was thoroughly discussed. For more information on this please contact Frank Goodwin at info@eurocarers.org

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Effects of cut backs on carers in Finland

By Heino Malla (Central Association of Carers in Finland)

Today Finnish people take care of their sick and old relatives and friends, as is common in most

European countries. Over a fifth of the population aged 15 years and over helps somebody who

is close to him/her, relative or friends, who needs help and support and would not manage to live

at home without family care. Of those who would otherwise be in institutional care, the family

carer does not receive any municipal grant in 200 000 cases, and they have to do their arduous 24

hour work alone. Our association sees that the situation is not at all satisfactory and that is why

we made first a complaint to the Parliamentary Ombudsman and after that complaint failed, due

to the Finnish legislation, a complaint was made to the European Council. In the complaint to the

Council, our association claimed that the unequal treatment of family carers is not compatible

with the rules of the Social Charter of the European Council, ratified also by Finland.

In the decision made by the committee of Social Rights in the European Council, the Committee

noted that Finland is breaking the rule of Social Charter (Article 23 §), concerning the right of the

elderly persons to social protection. The Committee noted that the lack of conformity in the

services provided for elderly persons throughout Finland, resulting from the lack of uniformity in

the funding of such services by municipalities, does not as such violate the article 23 of the

Charter. However, the fact that the legislation allows practices leading to a part of the older

population being denied access to informal care allowances, or other alternative support,

constitutes a violation of this Article.

Our Association, The Central Association of Carers in Finland, has made a public

pronouncement concerning the decision of the Committee. We demand that the legislation of

Finland has to be modified so that the obligations of the Charter shall be fulfilled. We are now

waiting the actions of our Government. Carers week in the UK and Ireland in June 2013 In the last month two countries – Ireland and the UK - celebrated a carers week. With regards to the first, Liam O'Sullivan (Care Alliance, Ireland) announces the publication of the first ever “National Carers Week Newsletter”. The Newsletter, in essence a review of the week, is available to download from www.carersweek.ie. As far as the UK is concerned, the Carers Week is the largest UK-wide annual awareness campaign for carers. It has taken place from 10 to 16 June 2013. During Carers Week the organisers recognise and celebrate the contribution the UK's 6.4 million carers make to the people they care for and many other things... If you want to know more please consult the dedicated website by clicking here.

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Report on family caring in Ireland by Liam O’Sullivan

We are delighted to advise of the recent publication of a report on Family Caring in Ireland, from Care Alliance. This report, for the first time, brings together the key publications on Family Caring in Ireland in one succinct publication, and will be a great resource for those working with and supporting Family Carers. With 219 references, this report will be a useful tool for all with an interest in the topic. Sections include:

Defining Caring Quantifying Caring Health, Financial and Employment Impacts of Caring Caring and Disability Young Carers Male Carers Life After Care Supports available for Family Carers NGO’s providing Carer Supports International Carer Bodies

Available to download at http://tinyurl.com/o84yq2v

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UPDATES FROM RESEARCH Overview of the projects in which EUROCARERS is currently involved

By Giovanni Lamura (EUROCARERS Vice-President for Research, INRCA, Italy) Please find in the table below an overview of the main projects in which EUROCARERS is currently involved. With regard to three of them – AIDA, INNOVAGE and ICARE4EU – you will find below an update on recent developments, provided by those of us currently most involved in them.

Updated overview of projects in which EUROCARERS is currently involved

Title Duration Funding

programme

EuCa

contact

person

Budget to

EuCa

(Euros)

EuCa

co-

funding

Dedicated

staff Focus

1 2 4 5 6 7 8 10

AIDA 2.2012 -

11.2013 PROGRESS

Licia

Boccaletti 51.790 12.930

Martha

Mackay

Integration of

social and health

care services

CARICT-PUBL 9.12 - 3.2014 IPTS Frank

Goodwin 2.450 None none

ICT-based

services for

informal carers

Icare4EU 3.2013 -

2.2015

EAHC -

Health

Programme

Marja Pijl Travel

costs only None None

Care for people

with chronic

conditions

(Advisory Board

only)

INNOVAGE 12.2012 -

11.2015 FP7-Health

Hanneli

Döhner 201.960 48.600

Areti

Efthymiou

ICT-based

services for

informal carers

More Years

Better Lives 2011 FP7

To be

decided

Travel

costs only none none

Coordination of

initiatives in the

field of

demographic

change (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)

SMARTCARE 3.2013 -

2.2015

ICT PSP –

CIP Marja Pijl 20.000 none volunteers

ICT services for

integrated care

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Update on the AIDA project, by Licia Boccaletti (Member of Executive)

The AIDA project, focussing on the integration of social and health care services, is progressing and its first results are now available. On the project website (www.projectaida.eu), in the “Project outcome” section, you can now find a collection of European Good Practices on social and health services integration (in English), together

with a report on the Italian context (at the moment in Italian only, but soon available in English as well). The next stage of the project will be focussed on the development of guidelines for social and health care integration, to be discussed in seminars to be held in five different EU countries. EUROCARERS, which is responsible for this activity, is now seeking for members interested in hosting one of these presentations, targeting social and health care sector stakeholders. Should you be interested, please do not hesitate to contact Martha (marthamackay@eurocarers.org) to candidate your organization! For further information, please contact Licia Boccaletti: progetti@anzianienonsolo.it. Get involved in the INNOVAGE project! by Areti Efthymiou (project manager)

As anticipated in previous issues of the Newsletter,

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 ICT-based

services to support informal carers. Below you find more

details and a renewed invitation to get involved in it from

Areti, EUROCARERS’ new project manager for

INNOVAGE.

A Multilingual web platform for informal carers, care

professionals and employers – GET INVOLVED!

EUROCARERS and INRCA are participating in the INNOVAGE project (http://www.innovage.group.shef.ac.uk/), aiming at developing a multilingual web platform addressing informal carers’ needs, which will be implemented in 27 EU Member States. The final aim is to make available – at both European and national level – a set of web services supporting informal carers in different areas, such as: information; training on care provision; physical and psychological health; social participation; reconciliation of unpaid care and paid work; support and respite care. Additional national contents addressing employers of working carers and care professionals’ needs, will be developed and implemented in certain EU countries.

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The involvement of EUROCARERS member organizations is a key part for the development of the web platform, which will provide quality web services according to the specific needs of carers. There are several ways for a EUROCARERS member organization to participate in the development of the platform by: a) taking part in short surveys for the selection of web services (carers’ needs , appropriate web tool, sustainability of the web platform) b) involving research and care professionals in your country/related to your organization in the development of national contents. Below you find the countries that will participate in developing such contents for each target group: Informal carers, care professionals and employers:

c) assisting project researchers in the dissemination of the web platform. A dissemination plan will involve presentation and training of the web platform to carers, care professionals and employers. Activities will include: EU events with EUROCARERS representatives, national and local events. In case, that you are interested in participating but you don’t find your country in the above list for care professionals and employers, let us know. Involvement of carers organisations in the development of national contents and dissemination activities will be reimbursed. Involvement in this project would offer your carer organization the ability to develop a web platform with your specific needs and interests and according to your country’s legislation and become part of an active carer organisations network. National events and training events organized with the help of EUROCARERS and INRCA researchers will help your organization to disseminate the platform among your target population (carers, employers and care professionals). You are welcome to send an email in the first instance to Areti Efthymiou: areti@eurocarers.org, EUROCARERS project coordinator, or alternatively to Frank Goodwin, eurocarers@gmail.com. EUROCARERS key personnel in the INNOVAGE project are: Frank Goodwin, President of

EUROCARERS, Hanneli Dohner, Vice President of EUROCARERS for Carers Organisations,

Giovanni Lamura, Vice President of EUROCARERS for Research Organisations, Elizabeth

Hanson, Researcher, Areti Efthymiou, project coordinator and Martha Mackay, project

NATIONAL

CONTENTS FOR CARE

PROFESSIONALS

Austria, Belgium,

Germany, Czech Republic,

Finland, Luxemburg,

Malta, Slovakia, Sweden

and United Kingdom

NATIONAL

CONTENTS FOR

EMPLOYERS

Bulgaria, Germany,

Estonia, France,

Lithuania, Latvia,

Netherlands, Portugal,

Sweden and United

Kingdom

NATIONAL

CONTENTS FOR

INFORMAL

CARERS

ALL

EU- MEMBER

STATES

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assistant. It must be mentioned that all EUROCARERS INNOVAGE team members are

participating in the project on a voluntary basis, except for the project manager, and are

responsible together with INRCA for all stages of the development and dissemination of the

multilingual platform.

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 future communications with you. For more information please contact: Areti Efthymiou: areti@eurocarers.org or Frank Goodwin: eurocarers@gmail.com Positive start of the ICARE4EU project By Marja Pijl (advisor to EUROCARERS)

In March not only the SmartCare project had its kick-off meeting, a little later in the same month the kick- off of the ICARE4EU project took place. ICARE 4EU is a much simpler project than SmartCare, but it also aims to improve integrated care, this time for people who suffer from multi-morbidity (several diseases at the same time). There are only 5 partners involved: NIVEL, a research institute in Utrecht (Netherlands), which is the coordinator, INRCA, Ancona (Italy), the Technical University Berlin (Germany), The University of Eastern Finland and the University of Warwick (UK). AGE (the European Older People’s Platform), the European Observatory on Health Systems and Policies and EUROCARERS participate in an advisory function. ICARE4EU does not intend to develop something new but wants to take an inventory of existing programmes of integrated care for patients with multi-morbidity in all EU countries, to study how they function, select the ones that seem most effective for a closer scrutiny, describe the key characteristics of the best practices and disseminate knowledge on implementing innovative multi-morbidity care between stakeholders and policy makers in Europe. The meeting was well-prepared and ran very smoothly, not in the least because the number of partners involved is limited. During the meeting we discussed what is meant by multi-morbidity. We came up with the decision that we will use the following definition: two or more medically (i.e. somatic, psychiatric) diagnosed, long lasting (chronic) diseases, of which at least one is a somatic disease. It was also decided that the target group of integrated care programmes will be adults (18 + years of age). Then the question came up how to define the programmes that are to be included in the search of ICARE4EU. It was mentioned that programme might be not be the right term to use, because it might be too strict, but there needs to be at least some sort of formalised cooperation. There need to be medical service(s) involved.

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Each of the partners had already agreed to collect data in a group of countries (5 or 6) and a key person will be found in each country who is able to give an overview of programmes or projects that can be included in the study. By means of a questionnaire these projects will be described. We discussed which items ought to be included in this questionnaire. With all these decisions made, the project can go ahead. The EU Project Officer attended the entire meeting and at the end expressed his appreciation of the way the project is being run. There was also a light touch in the meeting: in the evening of the first day we went to a cookery workshop where we had to prepare our own meal. The men in the meeting turned out to be very active cooks! For more information on the ICARE4EU project: http://www.icare4eu.org/.

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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 (2013-14) Executive Committee are: Frank Goodwin (President), Hanneli Döhner (Vice President Carers Associations), Giovanni Lamura (Vice President Research), Licia Boccaletti, Marijke Steenbergen, Helle Lepik and Marja Tuomi. In addition, the Executive is supported by 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: 12th July 2013