From 2010 to 2012, twelve COFACE member organisations have participated
in a European project on family carers called Self-assessment of their needs
by family carers: The pathway to support. COFACE is an associate partner,
responsible for the dissemination of the project results at EU level. The
partnership is coordinated by Unapei, a French umbrella organisation defending
the rights and interests of persons with intellectual disabilities and their
Absorbed as they are by their commitment to their relatives, family
carers often neglect their own issues and the outside support they could seek.
Often even, they don’t consider themselves as carers but just as parent or
spouse, and they have no knowledge of their rights.
The objective of the partnership is to identify, at EU level, good
practices in the field of awareness raising and training aiming at promoting
self-assessment of their needs by family carers. Indeed, it is key that they
take these steps to gain awareness of their difficulties, to define their needs
and to ask for adequate support.
Ultimately, the aim is to prevent social exclusion of families and to
ensure quality care for persons with dependency needs.
The project has led to the development of three sets of recommendations,
all included in the project final report (see below):
- Recommendations for the
Design of Tools for the Self-Assessment and Expression of their Needs by Family
- Recommendations on
Training Provision to be Made for Family Carers and Professionals to Help
Family Carers Assess and Express their Needs.
- Recommendations to the
In order to find solutions adapted to the diversity of situations, the
working group brings together associations from nine countries, with various
scopes (NGOs active in the field of disability or Alzheimer disease, family
carers’ organizations, and general family organisations) and involved family
carers at all stages with a participatory approach.
Beyond brainstorming on self-assessment, the project also encompasses
study visits with the aim of understanding better the various schemes of help
to carers existing in Europe.
The project is funded with support from the European Lifelong Learning
Programme "Grundtvig”, aiming at the promotion of adult education.
See also: Guiding principles for the learning partnership
Belgium: Association de parents et professionnels autour de la personne polyhandicapée (AP³)
Bulgaria: Center of Women’s Studies and Policies (CWSP)
Cyprus: Pancyprian Organisation Polyteknon (POP)
Spain: Confederación española de familiares de enfermos de alzheimer y otras demencias (CEAFA)
France: Association des Paralysées de France (APF)
and Union nationale des associations de parents, de personnes handicapées mentales et de leurs amis (Unapei)
Ireland: The Carers Association
Italy: Il Coordinamento dei familiari assistenti "Clelia" (Co.Fa.As «Clelia»)
Luxembourg: Association des parents d’enfants mentalement handicapés (APEMH)
Slovakia: Club of Large Families (KMR)
Belgium: Aidants Proches
France: Association nationale Spina Bifida et Handicap Associés (ASBH)
, Union nationale des associations de familles de traumatisés crâniens et cérébro-lésés (UNAFTC)
and Alliance Maladies Rares
1. Analysis of the obstacles to carers’ own perception of their needs (psychological obstacles, lack of time, etc.)
2. Overview of existing tools to raise awareness and train family carers to self-assessment of their needs; and critical analysis of these tools (bad and good practices)
3. Identification of training provision to be made for family carers or professionals to help family carers to assess and express their needs
4. Comparison and analysis of the findings to elaborate recommendations for the future design of new tools (training and other tools)
5. Dissemination of the results and recommendations at local, regional, national and EU level.
Survey on obstacles to family carers’ perception and self-assessment of their needs
France Full report
Ireland Full report
Tools for self-assessment of their needs by family carers: best practices
Guide to Families’ Needs
Overview of best practices examples collected at national level
Published on 23 Dec 2010
Updated on 03 Sep 2012