Eurocarers
EuCa
Eurocarers seeks to advance the recognition of informal care and represent and act on behalf of all carers, former carers (and their organisations), irrespective of their age or the particular health need of the person they are caring for.
ID: 887457714435-80
Lobbying Activity
Response to The new Action Plan on the implementation of the European Pillar of Social Rights
29 Aug 2025
Eurocarers represents informal carers at European level, irrespective of their age or the particular health needs of the person they care for. Our network brings together 76 carers organisations, as well as relevant universities and research institutes, across 25 countries. Eurocarers welcomed the launch of the first European Pillar of Social Rights Action Plan, which included the announcement of an initiative on long-term care (LTC) to set a framework for policy reforms to guide the development of sustainable LTC that ensures better access to quality services for those in need. We supported the European Care Strategy subsequently adopted. Not only did it mark the commitment of Member States to develop synergies in their reforms and initiatives to tackle the health and LTC challenges of demographic transition, but also represented a significant step forward in recognising the vital contribution of informal carers and the impact of caregiving on their social and professional lives. It rightly acknowledges that professional and informal care go hand in hand and urges Member States to identify and support informal carers, alongside improving the adequacy, affordability, and quality of LTC services. While this initiative generated real momentum in favour of ambitious LTC reforms and recognition of informal carers, it has not yet translated into tangible improvements for all informal carers across the EU. The publication of the national reports on the implementation of the Council Recommendation on access to high-quality long-term care (LTC) 2024 marked a crucial milestone in the implementation of the Strategy. These reports assess various aspects of LTC and workforce development, as well as support systems for informal carers. They offer a valuable opportunity to evaluate and reflect on Member States commitment to addressing the needs of informal carers. Despite their limitations, and the varying levels of progress in addressing informal care, their publication constitute a significant breakthrough. They enhance the transparency and comparability of LTC policies and provide a key tool to facilitate policy dialogue and participatory processes at all levels. They should be regarded as a starting point for developing comprehensive LTC strategies that genuinely align with the challenges at hand (cf. Eurocarers analysis in attachment). Improving the resilience and preparedness of our societies requires a holistic approach to informal care, recognising it in its entirety as a widespread and multifaceted reality spanning all stages of life and involving individuals in need of care of all ages. It should be supported by comprehensive policies encompassing training, tailored support, health promotion and disease prevention, worklife balance, access to social rights, and provision of formal care. Informal care should not be seen simply as a tool for long-term care, but as a fundamental societal reality with life-changing implications for many, and as a key factor in gender inequalities. This requires ambitious reforms with a long-term vision and improved governance across the complex, fragmented, and constantly evolving policy areas of health, social support, LTC, and employment. Given the commonality of challenges across the EU, and the transnational impact of national policies, EU-level cooperation based on shared values and objectives remains essential. This includes fostering mutual learning, harmonising data, funding research, developing skills, and supporting regional initiatives. The EU also has a key role to play in guiding Member States efforts to develop a legal framework protecting informal carers, building on the WorkLife Balance Directive. Therefore, the new plan to deliver on the Social Pillar should reconfirm the European Unions commitment to care and ensure support for the development of high-quality services and measures for informal carers, tailored to their specific needs.
Read full responseMeeting with Sirpa Pietikäinen (Member of the European Parliament)
5 Jun 2025 · Care as a green job
Meeting with Sirpa Pietikäinen (Member of the European Parliament)
28 Mar 2025 · Informal carers
Meeting with Idoia Mendia (Member of the European Parliament)
24 Sept 2024 · Meeting with Eurocarers
Response to 2023 Strategic Foresight Report
13 Mar 2023
Eurocarers brings together carers organisations as well as relevant universities & research institutes a unique combination that enables evidence-based advocacy. Our network works to ensure that care is valued, and unpaid care is recognised as central to the sustainability of health and long-term care (LTC) systems, and therefore to the sustainability of our fiscal and economic systems. Eurocarers defines a carer as a person who provides usually unpaid care to someone with a chronic illness, disability or other long-lasting health or care need, outside a professional or formal framework. We believe that carers know-how and needs are worth listening to and people should have the right to choose freely whether they want to be a carer, and to what extent they want to be involved in caring. Our aim is therefore to act as a voice for informal carers, irrespective of their age or the particular health need of the person they are caring for. The Care challenge Europes overall increase in life expectancy and ageing demographic is generating a growing incidence of age-related conditions, a growing demand for care in all age groups and a serious sustainability challenge for care systems .This is exacerbated by an ageing EU health and social care workforce, care workers shortages and insufficient new skills and competences in this sector. These challenges are consistent across EU member states. Against this backdrop, the shift towards home-based care is seen as a practical measure to contain the costs of services while also supporting widespread preferences among people. All of this puts more and more pressure on informal carers predominantly women who already provide a large part of LTC. In Europe, 80% of LTC is provided by informal carers. The projected budgetary impact of a progressive shift from informal to formal care by 2070 would imply an increase of the share of GDP devoted to Long-Term Care by 130% on average for the EU. The value of informal care in Europe is not only a matter of finances. Informal care also has an intrinsic value as an expression of solidarity and attention to the most vulnerable, and a contribution to social cohesion. Caring, and its impact on both those who carry out the role and those who receive care engages civil, political as well as socio-economic rights. The provision of the latter in particular requires positive actions by the State. The need for a strategic and innovative approach to Care Caring for a loved one can be a source of great personal satisfaction, but it does create its own set of challenges. These can include physical and mental health problems, difficulty remaining in employment, risk of poverty, and social exclusion. Advances in medicine also mean that carers find themselves having to deliver more and more sophisticated levels of care, with very little training and minimal support. Carers are the keystone of health and social care systems, but their role is not always recognised and they lack support. A redistribution of care responsibilities between men and women, as well as between the family and public authorities, has become more critical and urgent than ever before. We welcome the European Care Strategy and hope it will contribute to addressing various challenges by encouraging member states to recognise and support informal carers and offer formal care alternatives to all, exploiting the job and wealth creation potential of the Silver Economy. On a broader level fiscal, economic, cohesion, and employment policies must support a re-orientation and a reshaping of LTC systems towards integrated high-quality affordable care provision centered around people. A description of our vision is summarised in the attached document Enabling Carers to Care - Eurocarers' Startegy'
Read full responseResponse to A comprehensive approach to mental health
14 Feb 2023
Mental health is traditionally approached through two broad theoretical approaches. On the one hand, the biomedical model builds on the idea that mental issues have a physical cause and are linked to biomedical factors or a genetic predisposition. On the other hand, the psychosocial model considers that an individual's psychological makeup cannot be studied without considering the social context out of which it arises. It aims to reconcile elements from psychology and sociology in order to provide a more comprehensive understanding of mental health. Eurocarers subscribes to this latter model which offers a much more holistic method to study and address mental distress, focuses on mental health as a human experience and takes into consideration the many factors that affect people's mental health outcomes, including wider socio-economic determinants (e.g. working and living conditions, education, etc.) Research has demonstrated that informal carers across the EU play a central role in the provision of care in Europe. Eurofound estimates, based on the European Quality of Life survey, that around 44 million people above the age of 18 years in the EU provide informal care more than twice a week. Yet, the provision of informal care does not come without a cost for carers themselves and society as a whole. While informal/unpaid carers provide a valuable service to society and looking after family members or friends brings great rewards, there is growing concern about increased psychological distress, strain and overall health deterioration endured by informal carers. Research has highlighted that the strain and burden associated with informal caregiving present all the features of a chronic stress experience: it creates a physical and psychological strain over extended periods of time, is accompanied by high levels of unpredictability and uncontrollability, it frequently requires high levels of vigilance, and has the capacity to create secondary stress in multiple life domains such as education, work, social inclusion and poverty. It is therefore crucial to consider the best interest as care providers and as a population at risk of mental health issues when devising an EU initiative on the topic.
Read full responseResponse to Recommendation on minimum income
1 Apr 2022
Eurocarers welcomes the announcement of a Council Recommendation on minimum income. Access to adequate income is a key issue for those who provide – usually – unpaid care to someone with a chronic illness, disability, or other long-lasting health or care need, outside a professional or formal framework. These informal carers represent 10 to 20% of the total European population. They provide an essential contribution to the sustainability of our long-term care systems while meeting the widespread preference for receiving care at home. Though, they are often pushed into poverty as a result of their caregiving.
The announced European Care Strategy is expected to encourage member states to recognise and support informal carers. In a consistent manner, they should take into consideration the specific situation of this vulnerable group when designing minimum income schemes.
Evidence shows that informal caring is a determinant of poverty and social exclusion. Indeed, providing care, especially intensive care, to a relative often entails a substantial economic cost: informal carers may be forced to cut down their working time hence reducing their income while contributing to the costs associated with the chronic condition of the person for whom they care. Moreover, accessing adequate housing enabling relatives to provide safe, efficient, and adequate care at home represents extra costs.
Care responsibilities are often a driver of ‘inactivity’ when conciliation reveals impossible. The conditionality criteria accompanying social benefits in some cases may not take caring responsibilities into account, leading to a situation where non-working carers are disproportionately affected by poverty. In 2016, 45% of non-working carers were in the lowest income quartile (compared to 25% of non-carers), 54% of non-working carers had difficulty making ends meet (compared to 38% of non-carers).
Informal carers face also a disproportionate risk of social exclusion in its wider sense given the difficulty in participating fully in society and benefitting from equal opportunities due to their proneness to isolation, stress, and mental health problems, in particular when not employed.
For all the above reasons, the risk of social exclusion of carers should be addressed via a comprehensive ‘active inclusion’ approach, combining adequate income, accessible and qualitative long-term complementary care support services for the person they care for, and person-centred support aimed to facilitate their integration into quality employment for those who can, and for those who cannot work their social participation. Such an approach should aim at preventing informal carers, in particular women, from being trapped in their caregiving responsibilities, but rather empower them to reconsider their role as necessary.
Against the backdrop of the current economic crisis, it is urgent that all member states protect informal carers effectively from poverty, and take the necessary steps to build relevant packages of income allowing people to make free choices between different care arrangements, without being financially penalised.
In the objective of ensuring access to adequate income for all, the EU should further support comparative analysis of national/regional schemes gradually put in place to support carers financially, assessing their advantages and shortcomings, hence supporting member states in the design of adequate support schemes fitting in their own social protection system.
The document attached (Enhancing the Rights of Informal Carers, Eurocarers, 2020) presents some concrete measures taken at national level with regard to carers’ income.
See also Eurocarers’ briefing on Informal care and poverty: https://eurocarers.org/publications/informal-care-poverty-and-social-exclusion/
Read full responseResponse to Proposal for a Council Recommendation on long-term care
25 Mar 2022
On the 15th September 2021, EC President Ursula von der Leyen announced that the European Commission will put forward a new European Care Strategy as part of its Work Programme 2022 in order to “support men and women in finding the best care and the best life balance for them”. Ms. Von der Leyen went on to add that “caring for someone you love is the most precious time of all”, thereby raising hopes that the EU care sector may finally receive the attention and support it deserves.
The Eurocarers network welcomes the announcement of a new - and long-awaited - EU Care Strategy, and the declared ambition to address both carers and care recipients, from childcare to long-term care, and to guarantee access to good-quality and sustainable care services for all throughout the life course by setting a framework for policy reforms. Importantly for our network, it is expected that the Strategy will cover the provision of both formal and informal long-term care in Europe and be an integral part of the European Pillar of Social Rights’ implementation plan. This very timely EC initiative, therefore, has the potential to generate very positive developments for an under-resourced and yet overburdened care community.
Eurocarers’ vision is that care should be approached as a comprehensive and multidisciplinary sector, rooted in human rights, choice, and dignity for both care recipients and their informal carers.
Against this backdrop, we believe that the EU Care Strategy should not only serve to coordinate member states’ efforts to meet the growing care needs of an ageing population, it should also be used to revisit the distribution of caregiving responsibilities between care professionals and informal carers, between the family and the State as well as between women and men.
Eurocarers’ submission entitled “The EU Strategy on Care: A new paradigm for Carers across Europe?” (attached) details the acute challenges that need to be addressed, and what we expect from the Strategy, considering both formal and informal long-term care provision. A series of practical and positive examples illustrate our contribution.
In practical terms, we expect the EU Care Strategy to:
• Introduce EU-wide indicators as well as ambitious targets regarding access to long-term care
• Define a quality framework for care services rooted in human rights and focused on people’s wishes, dignity and quality of life
• Enhance the development and implementation of integrated community-based and home care services.
When it comes to informal carers, it is key important for the Strategy to encourage EU member states to define a legal status for all informal carers, and give them access to a set of rights (e.g. access to social protection, financial support, pension, respite care, information and training).
To ensure that the EU Care Strategy delivers concrete results in the coming months and years, it should be treated as a prominent priority at all levels and appropriate means should be mobilised in terms of funding, mainstreaming and coordination, monitoring, participation, and awareness-raising.
[Eurocarers’ network: membership, values, and objectives
Eurocarers’ network currently brings together 75 carers’ organisations as well as relevant research & development organisations from 26 countries – a unique combination that enables evidence-based advocacy. Our network works to ensure that care is valued and unpaid care is recognised as central to the sustainability of health and long-term care systems. We believe that carers’ know-how and needs are worth listening to and people should have the right to choose freely whether they want to be a carer, and to what extent they want to be involved in caring. Our aim is therefore to act as a voice for informal carers, irrespective of their age or the particular health need of the person they are caring.
More information on Eurocarers’ website: https://eurocarers.org/ ]
Read full responseMeeting with Stelios Kympouropoulos (Member of the European Parliament, Shadow rapporteur)
2 Mar 2022 · European Care Strategy
Response to Green Paper on Ageing
14 Dec 2020
Research has demonstrated that informal carers across the EU play a crucial role in the provision of care to people with long-lasting needs. According to some estimates, over 80% of all long-term care (LTC) in Europe is provided by family, friends and neighbours, with women providing the lion’s share of care. The estimated economic value of this unpaid care - as a percentage of the overall cost of formal LTC - ranges from 50 to 90 % depending on the member state. Recent data suggests that replacing informal by professional care would result in a substantial increase in the share of GDP devoted to LTC (130% on average for the EU). Against this backdrop, meeting the growing care needs of an ageing population without recognising the vital role played by millions of informal carers across Europe will prove extremely challenging.
The provision of informal care without proper recognition or support can nevertheless have harsh consequences for carers themselves and society as a whole. Carers are indeed often faced with additional costs as a result of the condition of the person they care for, and their caring responsibilities can be a barrier to entering education and paid employment. Many working carers have to perform a difficult balancing act and they may be forced to reduce their working hours or drop out of the labour market, thereby reducing their income and pension entitlements. The gender dimension of this phenomenon is particularly striking. Caring can also heavily impact on carers’ health and wellbeing. Caregiving often requires physically demanding work over a long duration, which may cause injuries and chronic illnesses. Carers also tend to neglect a healthy lifestyle and the prevalence of mental health problems among carers is 20% higher than among non-carers. The important role played by carers– as well as the challenges attached to it – were made particularly apparent during the COVID crisis as informal carers often found themselves in first line and isolated.
Over the last few years, much has been achieved in taking forward the carers’ agenda at international, EU and – to some extent – national and regional level. But policy developments of relevance to carers concern a broad set of policies in various fields and they have often been implemented in a fragmented way. As a result, they have not always resulted in real advances in the daily life of carers.
The Green Paper on Ageing can lead to a much-needed European plan to address the challenges related to long-term care and the situation of informal carers in Europe. More specifically, two interrelated initiatives should be undertaken. Firstly, the Green Paper should pave the way for an EU legislative initiative on LTC, whereby member states commit to upward convergence in the provision of accessible, affordable and good-quality services, with a focus on home and community care. This should seek to address issues in relation to both formal AND informal LTC, including through support measures targeted at informal carers. Secondly, the Green Paper should be used to encourage a holistic policy approach to tackle all the facets of the caregiving experience (e.g. access to employment and education, training, recognition of skills, respite care, etc.) Our vision of this care(r)-friendly environment is detailed in our proposed EU Strategy on Carers (document attached). Some countries or regions have already started to recognise and support carers and the EU Social Pillar can be used to build on these developments and define joint social standards for this vulnerable group whose role is so crucial.
Eurocarers is the European network representing informal carers and their organisations, irrespective of the particular age or health need of the person they are caring for. Our network currently brings together 73 carers’ organisations as well as relevant research & development organisations from 26 countries (http://www.eurocarers.org).
Read full responseMeeting with Astrid Dentler (Cabinet of Vice-President Dubravka Šuica), Deša Srsen (Cabinet of Vice-President Dubravka Šuica)
22 Apr 2020 · - Report on the Impact of Demographic Change - Green Paper on Ageing - COVID-19 and informal care - Challenges for long-term informal care
Response to Europe’s Beating Cancer Plan
2 Mar 2020
Eurocarers welcomes the new Commission’s ambition to beat cancer. We acknowledge the recognition in the roadmap of the impact of cancer on patients’ ‘families’ and the mention of the need to involve informal carers in a ‘holistic approach in the training’, and to address ‘the specific situation of carers’. For the European ‘Beating Cancer Plan’ to achieve its goals, it is indeed of paramount importance to address the situation of carers in a comprehensive way.
Today, there is a pressing need in Europe to better support those who provide care informally to a relative with a chronic disability or disease such as cancer. Cancer carers, whose contribution is key to the efficiency of the treatment and the well-being of people affected by cancer and survivors, often pay a heavy price in terms of their own health and socio-economic status. Though, they remain mostly invisible.
Given that most cancer treatment has moved out of the hospital setting and into an outpatient clinic, informal carers are the ones who provide the daily care and other routine tasks. Informal carers therefore take on many roles, which often change along the care trajectory.
Apart from ensuring formal, good quality and affordable support services for the people affected by cancer (e.g. psychological support, home care, palliative care), informal (cancer) carers also may need specific support measures, which all contribute to better carer involvement, ultimately improving outcomes and quality of life also for cancer patients.
“A diagnosis creates tension in the family – you need time to recuperate and think through the new roles, new perspectives, new challenges. Furthermore, it is essential to understand the prognosis and the current stage of cancer diagnosed” says a cancer carer.
In summary, cancer carers would benefit from the following support measures:
• Integrated health and care systems centered around the needs of the patient and the carer, including one central contact point for carers;
• Early involvement in an equal partnership between care recipient, health professional and carer, should the carer wish to be involved;
• Access to educational resources and training to prepare for the carer role (e.g. knowledge about the disease, training about monitoring symptoms and managing side-effects, nutrition…);
• Psychosocial support and counselling;
• Access to peer support;
• Flexible respite care;
• Carer-friendly working environment including flexible working conditions and paid care leave;
• Other financial support measures mitigating the impact of intense care on carers’ socio-economic situation.
Progress in the support offered to cancer carers will only be achieved through innovative measures co-designed with carers themselves, building on dedicated research and exchange of good practices. Such progress should take place in the framework of comprehensive strategies aimed at developing carer-friendly societies in the EU.
For further information related to caring for cancer patients, see Eurocarers’ Cancer Toolkit (https://www.eurocarers-cancer-toolkit.eu/) and the Joint White Paper on Cancer Carers by the European Cancer Patient Coalition and Eurocarers (https://eurocarers.org/publications/joint-white-paper-on-cancer-carers-with-ecpc/).
See also Eurocarers’ Strategy ’Enabling Carers to Care’ (https://eurocarers.org/strategy/).
Read full responseMeeting with Annika Nowak (Cabinet of Commissioner Vytenis Andriukaitis) and European Social Network AISBL and
15 Sept 2016 · Primary Care