Informal caregivers: major players in the healthcare system

Prior to our conference taking place on April 9 about informal caregivers, we asked Claire Champeix, policy officer at Eurocarers about the major issues for this topic. Eurocarers is a European association which brings together carers’ organisations as well as relevant universities & research institutes to ensure that care is valued and that unpaid care is recognised as central to the sustainability of health and long term care systems.


Why carers count


Demographic ageing is a significant challenge faced by all EU Member States, which entails notably a growing prevalence of chronic conditions, a growing demand for care, and a serious sustainability test for our care systems.  Estimates suggest that as much as 80% of all long-term care in Europe is provided by informal carers[1]) – i.e. families, friends, neighbours who provide (mostly) unpaid long-term care outside of a professional context. Women provide the lion’s share of this care as daughters (in law) and wives/partners.

The estimated economic value of informal care in the EU is huge – it ranges from 50 to 90 % of the overall cost of formal long-term care depending on the country[2]. Replacing informal by formal care would more than double the average share of GDP devoted to long-term across the EU.

Against this backdrop, it is obvious that the importance of informal care to both care recipients and the sustainability of care systems in Europe can no longer be ignored. Yet, in most European countries there is no formal recognition of the role of carer, and many informal carers still do not have the opportunity to choose freely whether they want to be a carer and to what extent they want to be involved in caring. Moreover, when not adequately supported, caring can have damaging consequences on the health and well-being, social inclusion, education and employment of carers themselves – thereby creating a vicious circle.


Some acknowledgment, but still insufficient support


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. The inclusion of the right to 5 days of leave per year for carers in the Directive on work-life balance for parents and carers recently adopted at the EU level is a positive sign of recognition of the contribution brought by carers, which hopefully will pave the way for more consistent strategies in support of informal carers at national and regional levels.

Indeed, policy developments of relevance for carers are often implemented in a fragmented manner and consequently do not always result in real improvements in carer support and empowerment. Good-quality and affordable long-term care should primarily rely on well-resourced and well-organised professional (i.e. formal) services, in particular home-care and community-based services. Investing in these sectors should therefore be seen as a key element in policies aimed at ensuring the right for all to affordable long-term care services of good quality, as foreseen in the European Pillar of Social Rights.


Eurocarers’ strategy to support and empower informal carers across Europe


However, given the prominent role of informal carers, much more could and should be done to recognise their role and their needs, to connect the dots between existing EU, national and regional policy initiatives and to trigger new policy developments to support and empower carers across Europe. In view of the European Elections, Eurocarers has launched an EU Strategy to support and empower informal carers, including ten necessary steps in developing carer-friendly societies across Europe. Notably, policy makers should seek to include a broad an inclusive definition of informal carers in the legislation, ensure carers have access to information and advice about care, develop policies and practices ensuring ease of access to suitable respite care, care-life balance, prevent carers’ poverty and allow them to maintain an active social, professional and educational life… The complete strategy is accessible on Eurocarers’ website (, proposing a pathway for improving concretely the life of informal carers and the persons they take care of, based on evidence and experience. Be it at national, regional or local level, the implementation of this strategy should build on broad partnerships, including public authorities, carers’ organisations as well as relevant stakeholders in the areas of health, education and employment.

[1] Hoffmann, F., & Rodrigues, R. (2010). Informal carers: who takes care of them? POLICY BRIEF APRIL 2010 European Centre for Social Welfare Policy and Research, Vienna


[2] Triantafillou J. et al, (2010) Informal care in LTC — European Overview Paper, INTERLINKS report.