Carers are defined as persons of all ages who provide care (usually unpaid) to someone with a chronic illness, disability or other long lasting health or care need, outside a professional or formal employment framework.
Research has pointed out that approximately 80% of care across the European Union (EU) is provided by families (spouses, parents and children) neighbours and friends. Even in countries with a well-developed supply of formal long-term care, the number of informal carers is estimated to be at least twice as large as the formal care workforce. Informal care provision is under pressure due to a combination of various demographic and socio-economic developments (such as lower birth rates, smaller families, increasing mobility, greater physical distances between relatives, the rising number of women entering the labour market, prolonged working life due to delayed retirement, et cetera). Rapidly increasing strain on carers is the result of the growing demand for care, the increasing shortages of formal caregivers and a decrease in the unpaid care potential. Sustainable care provision is rapidly becoming a major issue in the majority of EU Member States.
Caring for a loved one can be a source of personal satisfaction and emotional gratification. It can also – if not adequately supported – have many challenging consequences for carers, such as an impact on the (physical and mental) health and well-being, social participation, integration and inclusion, financial difficulties and even poverty, due to cut backs in social provision and direct costs of care. Moreover, difficulties in relation to balancing paid work with care responsibilities can impact on labour market participation and social protection rights later in life. For young carers, caring can have a negative impact in terms of natural socialization processes as well as their formal education and a significant impact on family relationships and employment prospects in later life.
Providing informal care can also have negative consequences for society and the economy, as it can result in lower productivity for those carers who combine care and work in an unsupportive environment. It can also lead to increasing health and welfare costs, due to carers’ physical and mental health problems.
Rationale for an EU-level strategy on carers
All Member States are facing the same challenges in terms of long-term care provision, both with respect to the development and implementation of effective care provision models as well as in relation to financial sustainability. While care provisions differ greatly between (and sometimes within) Member States, it is clear that all countries need the resource provided by informal carers to prevent a collapse of the entire care system. Fortunately, recognition of the importance of carers and their contribution to care and well-being, society and the economy as a whole, is slowly on the increase: some EU member states have specific policies for carers or carers’ strategies in place.
However, the fact remains that health and long-term care provision remain the responsibility of the Member States themselves. The current EU Treaties leave the EU institutions with limited possibilities for action in these areas, as Member States feel that these areas are best addressed at national level. Yet, there is a growing recognition that the challenges posed by the provision and financing of longterm care are the same for all Member States, and therefore, that there is the potential for mutual learning and cooperation. The great variation between Member States in terms of care provision models and the roles of formal and informal care within these, means that there is a huge potential for exchange of experiences and ideas and good (as well as bad) practices.
This recognition is reflected in the fact that, at EU-level, both the European Parliament and the European Commission have made efforts to put carers and their issues on their policy agendas:
The Parliament has supported direct references to carers under the EU’s PROGRESS programme (now called EASi) budget lines since 2011; the European Parliament Interest Group on Carers is continuing to act as a forum for discussion on EU policy, assessing the impact of EU policy developments on carers. This group was set up and is coordinated by Eurocarers, the European organization advocating on behalf of carers.
The European Commission is concerned too; carers and their issues have been explicitly referred to in three major initiatives over recent years, i.e. the European Innovation Partnership on Active and Healthy Ageing, which explicitly targets carers as one of the main stakeholder groups; the Employment Package, which includes a specific policy paper on the employment potential of household and personal services; and the Social Investment Package and its Staff Working Document on Long-Term Care, explicitly recognizing the huge contribution of carers and acknowledging their main issues and challenges. While this is to be welcomed, more action is needed to ensure that carers receive the recognition and support to enable them to keep on providing care.
As the impact of being a carer can be felt in many different areas and at different times of life and work, this action - a comprehensive EU-level carers strategy - should be multi-dimensional and longitudinal. It should address:
social inclusion and societal participation of carers;
accessible and reliable information and advice to promote self-care and self-management solutions in family care;
emotional support and counseling;
respite breaks for carers;
health promotion and protection for carers in health services and delivery;
measures that enable working carers to combine their care and work responsibilities;
ensuring that carers do not lose their financial and social security rights as a result of their caring responsibilities;
training in core caring skills;
information and communication technology (ICT) products and services;
empowerment and capacity building of carers and their representative organisations.
While the EU remit in the field of care provision is limited, as outlined above, the EU has a number of ‘tools’ that could be used to facilitate recognition and support for carers:
Inclusion of carers issues in health and social policy development: mainstreaming
The fact that the European Commission is referring to carers in the Active and Healthy Ageing Partnership, the Social Investment Package and the Employment Package is a useful start. Nevertheless, carers and their issues could be included more explicitly in a number of further current and future programmes and initiatives for employment, health programming, disability strategies, assisted living programs, gender- and youth policy etc.
A specific EU action programme on carers could be put in place, based on previous EU-level action programmes e.g. on ageing, disability, etc. This could ensure and coordinate an effective exchange of information, experience and good practices between relevant stakeholders. Another option would be to consider designating one of the coming years as the European Year of Carers.
A number of these initiatives hold the potential for funding. This funding could contribute to capacity building of carers in relation to provision of support (e.g. emotional support, exchanges) and advocacy (e.g. policy development, practical solutions). It could also support exchange of information, research and networking.
Data collection and monitoring
The Horizon 2020 research programme could include research on carers in future calls for proposals under the action ‘Tackling Societal Changes’, section ‘Health, demographic change and well-being’. This research could be built on earlier major EU-funded research projects such as Eurofamcare, thus allowing for an updated picture of the achievements and challenges characterizing this crucial area of EU-citizens’ life.
While most of the legislative competence in the relevant areas lies at the national level, there are some areas where legislative action could be taken, such as legislation relating to carers leave and retraining and re-entry into the labour force. Action in other areas could be explored and experiences disseminated between countries, while recognizing and respecting the principle of subsidiarity.
Inclusion of carers in relevant consultations, fora and advisory boards
Carers and their representative organizations could be included in social and health consultations as well as in relevant fora and advisory boards as a relevant stakeholder. This could help assess proposed policies and initiatives for their impact on carers and their cared for persons.
As the information and data reported above clearly show, sustainable health and care provision systems simply do not work without carers. Carers are:
a highly relevant stakeholder group in society, providing day to day care provision for those in need of care (of all ages) and, at the same time,
the largest contributors to the sustainability of our health and social security systems.
If carers are expected to keep providing care – and they are – their needs and requirements should be an inherent part of health and social policy development, and their contribution should be properly considered as part of the economic equation.