Opinion: Why do we need a European Charter of Family Carers?
I am co-chair of the COFACE Disability Platform of COFACE Families Europe, and platform which was founded nearly 30 years ago to promote the interests of people with disabilities, their families and carers, and the recognition of their rights throughout life. I had the pleasure of talking about our Europe work to the Capdroit community in France end of March.
In Europe, 80% of care is provided at home by family members or friends, and on average 2 out of 10 people are carers.(1) These include 32 million women, who help 17 hours a week according to the World Health Organisation.
Until the 1960s, there was no such thing as a ‘carer’, because the role was confined to that of a woman, mother, wife or daughter, whose sole concerns were the upkeep of her home, the education of her children and the comfort of her husband – who was responsible for bringing home the money needed. Taking care of an ageing parent who is losing his or her independence, or of a child or spouse who is not able-bodied, is a “natural” responsibility. It was good manners, and it was also her duty. Not to mention the fact that women are reputed to be predisposed to mothering and caring for others! Stereotypes in this area are still very much alive. Until the first half of the twentieth century, no one questioned this fact, not even the women themselves. Helping someone close to you was “natural”, devoid of value or recognition.
However, as women progressively left their kitchens to enter the job market, a profound societal transition occurred within the family structure. This fact, associated to the current ageing of the population, have both highlighted the value of family care work and its associated risks. As family care became the subject of ever more scrutiny, questions related to the efficiency of exchanges within the household entered the public sphere. Déchaux (1996) illustrated this approach when he wrote about the ‘hidden economy of kinship’. Underlying these trends, another question became central: are we going to run out of carers?
It was against this backdrop that in 2003 the COFACE Disability platform decided to take an in-depth look at these “natural carers” or “close carers” or, more often in Europe, “informal carers”, the majority of whom are women, who have to reconcile family and professional life, lose resources and put their health at risk. We started, therefore, with an overview of the situation in Europe (COFACE Disability, 2003), which showed that, on the whole, these carers had no specific rights or recognition, and receive little or no support, with the exception of Luxembourg, the United Kingdom and Sweden, which had more advanced legislation on the subject at the time. Depending on the country, the term “carer” does not exist, and when it does, it is used interchangeably with “natural”, “informal”, or “de facto” – terms that are fraught with meaning, referring to the obvious and natural nature of the help given by mothers, spouses or children who are only doing their duty!
On the strength of these results, we set up a working group to draw up a Charter on the fundamental rights of ‘family carers’ and decided to draw up a list of demands and recommendations to be submitted to national and European public bodies. We began by agreeing on a ‘European’ definition of the person we chose to call a ‘family carer’, because in almost 98% of cases they come from the family. The working group weighed up each word, each sentence, each idea, which were worked on and reworked until, beyond politics, cultures, languages, practices and associative lines, everyone agreed with the terms used and appropriated them for a definition of the family carer and the application of a certain number of principles.
Published in 2007 and updated in 2024, the “European Charter for Family Carers” was drawn up as a reference tool to be implemented by various organisations representing people with disabilities, older people and/or people with complex needs and their families in the European Union, as well as by EU institutions. The Charter is in line with the Convention on the Rights of Persons with Disabilities (UNCRPD) and other major international texts from the United Nations, the Council of Europe, the European Union and the European Disability Forum. Texts that directly concern the lives, dignity, rights, equality, non-discrimination, access to services and full citizenship of people with disabilities, their families and their carers. The link between the CRPD and the Charter is all the more stronger since the UN Committee on the Rights of Persons with Disabilities handed down an important decision concerning the rights of family carers in October 2022. In this landmark decision, the Committee specifically noted that party states to the Convention have the duty to provide adequate support services to family carers so that they can in turn support their relatives to live independently in the community.
- The charter helps to raise the profile of carers, naming and defining them so that we know exactly who we are talking about. It makes carers a reality outside the private sphere by publicising the invaluable role played by these economic players.
- The charter sets out precise rights corresponding to the needs of carers, and can thus be used by public authorities in their duty of solidarity and respect for the fundamental rights of carers and those being cared for.
- The charter helps carers to become aware of the special role they have taken on, because feeling like a carer, or agreeing to be one, is still a difficult process for many carers, who do not make use of their rights. Acknowledging that you are a carer can enable you to express your own needs and your choice whether or not to help, or to help a little. It allows them to say “I’m not the only one going through this, I have the right to be tired, to ask for help, to want adjustments to my working hours, respite, etc.”.
The Charter supports existing texts and positions and is intended as a reference tool for international, European and national advocacy. If COFACE Disability has chosen to update it, it is to highlight the persistence and increasing establishment of situations of extreme vulnerability for many families and more particularly for women and young carers. Our initial ambition was to foster and develop a genuine political attention to the needs of carers, and while significant progress was achieved, there is still a lot to be done, especially in the current challenging landscape of demographic ageing and insufficient availability of care services.
A 2017 COFACE study, “Who cares: Study of the challenges and needs of family carers in Europe”, shows that carers are still an invisible workforce and represent one of the least listened-to groups. The latest opinion by the European Economic and Social Committee in July 2024 also calls on the Commission to make informal carers a top priority in the long-term care strategy.
(1) Hoffmann, F. & Rodrigues, R. (2010). Informal Carers: Who Takes Care of Them? Policy Brief 4/2010. Vienna: European Centre.
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Further resources
European Charter for Family Carers | COFACE Families Europe (2024)
COFACE Disability Charter in Easy-to-read version (2024)
European Economic and Social Committee Opinion on caregivers (2024)
Key Findings: Family carers in Europe today | COFACE Round Table (2024)
Who Cares ? Study on the challenges and needs of family carers in Europe | COFACE Families Europe (2017)
About the author: Chantal Bruno is a psycho-sociologist and trainer at the Aquitaine Institute of Social Work (Talence) and at APF France Handicap. She was a nurse on humanitarian missions in Lebanon and Afghanistan in 1983 and 1984 for Aide médicale internationale. She represents the APF as chair of COFACE Disability (Europe) and the Collectif inter-associatif de l’aide aux aidants familiaux (CIAAF).
**DISCLAIMER: All opinions in this article reflect the views of the author, not of COFACE Families Europe**
