1.
News from Eurocarers (by the executive committee)
2.
News from EU (by Christine Marking)
3.
Exchange of good practices, projects and research
4.
Literature on informal care
5.
Interesting links on Respite care
6.
Meetings and other events: the conference in
7.
Contact details for national carers’ organizations
8.
NEXT EUROCARERS NEWSLETTERS
1. News from Eurocarers
Welcome to the autumn edition
of the Eurocarers newsletter. Hope you all enjoyed a pleasant summer despite
the weather. Since our last edition much has been achieved by Eurocarers
through the work of its members. Firstly, it gives me great pleasure to report
briefly on the very successful conference which was hosted by Carers Sweden at
the end of May the theme was Carers Issues within the EU. Maria Larsson Swedish
Minister for Care for Older People and Public Health addressed the delegates
and indicated to us that the issue of Caring and Older People would continue to
be a focus during the forthcoming French Presidency.
A special welcome was extended to the representatives from our
new member countries, The Czech Republic, Latvia, Estonia, Lithuania and
Slovenia, who described the situation of caring within their respective
countries. An exploratory meeting between members of Eurocarers and potential
corporate sponsors took place, where an exchange of ideas and ethical
guidelines were discussed. It is hoped that draft contracts re. funding will
soon be available for consideration.
A word of thanks goes to the Chairman of Carers Sweden for the
work in coordinating all aspects of this Conference and making this a very
positive experience for everybody.
Representatives of Eurocarers were invited by the Slovenian
Minister for Health to address the topic of Human Resources in Long Term Care,
at the EU Presidency conference on ‘Intergenerational Solidarity for Cohesive
and Sustainable Societies’ . This provided an opportunity for the organisation
to describe the crucial role of Family Carers in the provision of long term
care in the home and the situation regarding migrant care workers within the
EU.
The presentation of a Factsheet on ‘Informal Care in Europe’
compiled by Eurocarers members at Vilans, MOVISIE and Mezzo in The Netherlands
was made especially available for this conference. This fact sheet provides us
with comprehensive data on the situation of caring in Europe and will be
formally launched at the General Assembly meeting in Brussels. The task will be
for all members of Eurocarers to bring this information to the attention of
their MEP’s and policy makers in order to raise awareness of caring issues and
to secure the objectives of the 10 Guiding Principles for all Carers throughout
the EU.
Preparations are being made for the forthcoming meeting of the
General Assembly and a meeting of the Special Interest Group on Carers which
will take place in Brussels in November. The meeting of the General Assembly
will be hosted by the European Economic and Social Committee.
We hope that all members and potential members will attend, as
you are the strength of the organisation.
I look forward to meeting you there.
Brigid Barron, Vice President Carer Organisations
European Parliament Special Interest Group on Carers
12 June 2008, Brussels: the European Parliament Special Interest Group
on Carers talked about “The EU, mental health and carers”. Kathy Sinnott MEP
welcomed participants, in particular the numerous representatives from Irish
carers organisations. She underlined the timeliness of the event, taking place
on the eve of the High Level Conference on Mental Health, organised by the
Commission in cooperation with the Slovenian Presidency and voiced her lifetime
commitment to advocating the rights of people suffering from mental illness. Marian
Harkin MEP also welcomed participants, and she underlined the role of the
Interest Group, i.e. to ensure that the needs of carers feature high on the EU
policy agenda.
Speakers:
Vilans, the Center of
Expertise for Informal Care, Mezzo and MOVISIE have published - under the
authority of Eurocarers - the factsheet “Informal care in Europe, The contribution of carers to long-term care, especially
for older people”.This factsheet provides
information about carers in the EU:
The factsheet will be send to
every Eurocarers’ member and will soon become available at the website in PDF.
Update First Eurocarers’ research project:
Care Provision within
Families and its Socio-Economic Impact on Care Providers;This EU-commissioned study began in March 2008. So far we have used existing EU-wide data,
from Eurofamcare and other FP5 and FP6 research, to document the socio-economic
impact of family care-giving for frail older people. We have also sought information on the
socio-economic impact of care-giving among carers of non-elderly people, from
published research and from expert informants in a small number of selected
countries. Through Eurocarers we are
seeking information for the third strand of the project – identifying examples
of good practice in supporting carers.
We are already aware of the lack of consistent information and
definitions used in different countries – for example, definitions of ‘heavily
involved’ carers vary considerably; and there is relatively little
comprehensive information on carers of non-elderly people. The final report of the study will be
submitted in December 2008.
Henk Nies, Marjolein Morée, Frits Tjadens, Vilans, Centre of
Expertise for Long-Term Care, Utrecht, The Netherlands
Commission:
European Parliament:
Call for good practices
You may remember that a couple of
months ago, we asked if you could send to us examples from your country of good
practice in supporting carers. We would
like to build up a library of examples of good practice that can be a resource
for other Eurocarers members to use. We
have had some responses to our request but we know that some of you wanted more
details about the types of ‘good practice’ examples to send.
In addition, two of our member
organisations – Vilans (Netherlands) and SPRU (England) are conducting a
research study funded by the European Commission, on the socio-economic impact
of caring. The study also requests
examples of good practice in supporting carers.
Those of you who came to the Eurocarers conference in Stockholm in May
will have heard one of the research team, Caroline Glendinning, describe the
study.
We have therefore worked together to
develop a form that sets out the information that both Eurocarers and the
research team need. PLEASE send us
examples of good practice in supporting carers from your country! Don’t worry if you can’t complete every
section of the form – we would rather have some information from you than none
at all.
We would be really grateful if you
could send us examples of good practice before the middle of September. Please could you copy these to both the
research team and to Eurocarers:
Research team: Nicola Moran, SPRU,
York: nem501@york.ac.uk
Eurocarers:
Lenie van der Veen, Mezzo, Netherlands. l.vdveen@mezzo.nl
Examples of a good practice
ACTION, Sweden
ACTION is a service for frail older
persons who prefer to stay and live in their own homes but who are in need of
support from nurses and relatives. These old people and their relatives are
provided with information and training to help them make their everyday life
easier and more comfortable. The ACTION service includes the provision of a
videophone which can be used for communicating with the nurses and other ACTION
families.
Results from research show that with ACTION:
More info: http://www.actioncaring.se
Substitute caregiver, Finland
In Finland family caregivers who receive a
caregivers allowance from the municipality are entitled to three free days a
month during a period when the nature of the care they have provided has been
demanding. During this statutory free time, the municipality is responsible for
providing substitute care to the care recipient. Usually substitute care is
organized outside home in institutions or nursing homes. There is a huge lack
of tailored, individual and suitable substitute care options. Some
municipalities have developed a new way of organizing substitute care at care
recipient’s home. They offer a possibility for a relative or friend of the
family to act as a substitute carer. The municipality is paying for the
substitute carer. This kind of possibility with minor bureaucracy is easily
accepted by care recipients and really welcomed by the families to whom it’s
suitable. More information
Patient discharge, Ireland: A tool which identifies the patient’s ongoing care needs
Discharge summary is important in
maintaining continuity of patient care from hospital to primary health-care
setting, particularly for elderly patients with complex co-morbidities. Caring
for Carers Ireland discharge summary project set out to improve the
communication of discharge information between primary health care facilities
and general practitioners through the design and implementation of a new discharge
summary template and its subsequent evaluation over the next three years. The
discharge summary form was paper-based. Post-implementation surveys of health
providers and Carers revealed high satisfaction rate. More information
The Meeting Centres
Support Program (MCSP) integrates different types of support for persons with
dementia and their carers, which have proved to be effective in practice and
research. There is a special activities programme and psychosocial approach for
people with dementia (helping them cope with dementia) and information, emotional, social and
practical support for their carers.
Integrated support means
that patients and carers are both supported by one professional staff member.
This proves to be more effective in
reducing the feelings of (over)burden of carers and in positively influencing
some potential determinants of experienced burden than non-integrated support,
such as psychogeriatric day-care. More information
This is a short list of recent
literature on the issue of informal care. In the pdf (see below) you will find
more articles and abstracts.
Activities
enjoyed by patients with dementia together with their spouses and psychological
morbidity in carers / R. Searson, A.M. Hendry, R.
Ramachandran, ... [et al.]. - In: Aging & Mental Health ; vol. 12 (2008) nr. 2, p. 276 - 282.Caring for a spouse with dementia is
stressful and respite care is sometimes used to reduce this burden. Spouses may find
some aspects of caring rewarding but the literature on positive aspects of
caring is limited. This article describes activities enjoyed by patients with
dementia together with their spouses, and examines their relationship with
psychological morbidity in carers.
Caregivers'
aspirations, realities, and expectations: the CARE tool / Janice Keefe, Nancy Guberman, Pamela Fancey, ... [et al.]. - In:
Journal of Applied Gerontology ; vol. 27 (2008) nr. 3, p. 286-308.Caregivers to family and friends are
increasingly recognized as essential players in the continued shift of care of
dependent populations to the community. Currently, Canadian provincial
home care programs have neither a comprehensive policy nor an assessment
regarding caregivers' needs. This article describes an assessment tool that
takes into account caregivers' reality and conditions and that situates them as
essential partners with the formal system and reports on the validation and
reliability testing of this tool.
Real
world implementation lessons and outcomes from the worker interactive
networking (WIN) project: workplace-based online caregiver support and remote
monitoring of elders at home / Diane M.F. Mahoney,
Phyllis H. Mutschler, Barbara Tarlow, ... [et al.]. - In: Telemedicine
and e-Health ; vol. 14 (2008) nr. 3, p. 224-234.The objective of this research was to
determine the feasibility of and receptivity to the first computerized workplace-based
direct caregiver intervention and to assess the effects on businesses, working
family caregivers, and their elderly relatives.
Use of
videophones for distant caregiving : an enriching experience for families and
residents in long-term care / George Demiris, Debra R. Parker
Oliver, Brian Hensel, ... [et al.]. - In: Journal of Gerontological Nursing ; vol. 34
(2008) nr. 7.Explores the role of videophone
technology in enhancing the distant caregiving experience of and communication
between residents of a long-term care facility and their family members.
Young
carers still 'hidden' after all these years? /
Janet Warren, Angela Ruskin. - In: Research Policy and Planning ; vol. 26
(2008) nr. 1, p. 45-56.This paper reports key findings from
doctoral research which identify a group of children and young people within
the population who have not been formally recognised in their caring roles nor
formally assessed as young carers.
See for more articles and abstracts
5. Interesting links on Respite care (world wide)
6. meetings
and other events
General
Assembly (GA) of Eurocarers, November
24th, 2008
The General Assembly (GA) of Eurocarers will be held in
Brussels, Belgium, in the offices of the European Economic and Social Committee
on November 24th, 2008 from
Conference Eurocarers
& Carers Sweden (Anhörigas Riksvörbund), Stockholm, May 29th 2008
EUROPEAN
DAY - 16 OCTOBER 2008 - “Demographic changes – "PARENTS, FAMILIES AND
SOCIETY" . The ageing of the population is a
new challenge for our society. It imposes our recognition of the wealth of the
elderly people’s competences as well as the burden that their dependence can
represent.
Within this context, a reflection on
the role of the families – men and women – as ‘carers’ must take place at
European and national level.The objective of this meeting is to evaluate the
needs and wishes of the european citizens, make suggestions and provide
answers.
The meeting will take place in
Brussels, on 16 October 2008. It will gather European and national policy
makers, researchers, family carers and representatives of elderly dependant
persons. It will give way to a large debate, at European scale, on efficient
ways to organize a society that will recognize the place and value of all its
citizens.
The Eurocarers’ research group is hoping to organise a symposium
- Supporting sustainable informal care – the EUROCARERS framework - at the 19th
IAGG World Congress of Gerontology and Geriatrics in Paris, July 2009.
Demographic and epidemiological trends increase the need for
informal care. EUROCARERS is a European network aiming to improve the situation
of carers in Europe. Members are carers’ organizations and
R&D-organizations. This symposium will address the main topics that are
relevant to informal carers and that are covered by research of Eurocarers’
R&D-members. We will use an innovative symposium format: it outlines our
conceptual framework (Henk Nies/Geraldine Visser), presents the papers in an
‘academic speed dating’ format and offers participants the choice between three
or four papers with the option to interact with the particular researchers.
Papers are:
More information: http://www.gerontologyparis2009.com
7. Contact details for national carers’
organizations
|
Country |
Official name |
Website |
|
Belgium |
Ons Zorgnetwerk |
|
|
|
Werkgroep Thuisverzorgers |
|
|
Finland |
Suomen Omaishoidon Verkosto |
|
|
|
Omaishoitajat ja Läheiset -Liitto ry |
|
|
France |
Association Française des Aidants Familiaux |
|
|
Ireland |
Caring for Carers Ireland |
|
|
|
The Carers Association Ireland |
http://www.carersireland.com |
|
Netherlands |
Mezzo |
|
|
Scotland |
The Coalition of Carers in Scotland |
|
|
Sweden |
Anhörigas Riksförbund |
|
|
UK |
Carers UK |
8. next
eurocarers’ newsletters
The next Eurocarers’ Newsletters will
be issued in December 2008 and March 2009. Do you have input or nice pictures
for the newsletter? Please send it to Geraldine Visser, Vilans, g.visser@vilans.nl
or Jolanda Elferink, MOVISIE, j.elferink@movisie.nl. The deadline for the next
edition will be December 10th.