Eighty percent of long-term care in Europe is provided by family members. More and better support for this group is needed, with a particularly acute need for improvement in several countries of Eastern and Southern Europe.
Text: Dietmar Schobel
“Informal carers are essential,” says the Director of Eurocarers, Stecy Yghemonos. Eurocarers is an umbrella organisation with 75 member organisations from 26 European countries, including NGOs, research institutes and university departments that focus on care and caring. Indeed, long-term care would be unthinkable and unsustainable without the dedication of caring relatives. Usually unpaid, they look after their partners, children, parents, parents-in-law or other relatives and loved ones who are suffering from a chronic illness or disability, or have other long-lasting health or care needs. In Europe, 80 percent of long-term care is provided by informal carers, with women providing the lion’s share of care. Estimates of the economic value of this unpaid care – as a percentage of the overall cost of formal long-term care provision in the European Union (EU) – range from 50 to 90 percent, according to Eurocarers.
The willingness to care for loved ones is an intrinsic part of the human experience.
STECY YGHEMONOS, DIRECTOR OF EUROCARERS
The demographic transition in Europe, i.e. the increasing proportion of older individuals and the decline in numbers of young people among the general population, is leading to growing challenges in both professional and informal care. “The willingness to care for loved ones is an intrinsic part of the human experience,” states Stecy Yghemonos, “but more and more carers, and women in particular, are in employment and are unable to provide care in addition to their work. Aside from that, an increasing number of people have to move to other regions because of their work and are therefore unable to look after their parents who are in need of care.”
Initial progress has been made
Eurocarers has developed a 10-step strategy to improve the situation of informal carers and move towards carer-friendly societies across Europe. This begins with the formal recognition of carers, and it ranges from possibilities for a short break from caring to financial remuneration, pension credits for care time or other options that provide legal and financial security. “Progress has been made in a number of countries in recent years, but it could be much greater and should proceed much faster,” emphasises the Eurocarers Director, whose organisation regularly compiles and publishes detailed updates on the situation of informal carers in the Member States of the EU.
In some countries in Eastern and Southern Europe there is a particularly acute need to catch up with the rest of the continent, says Stecy Yghemonos, who points out that in this part of the world, long-term care is still often seen as purely a family matter and thus receives relatively little support from the state. These differences are also reflected in the percentage of cases where long-term care is solely provided on an informal basis, leaving relatives with virtually no support from mobile carers or family helpers, for example. According to the 2021 long-term care report jointly prepared by the Social Protection Committee and the European Commission, this is the case in Ireland and Denmark in only 30 to 40 percent of cases, but in 85 percent or more of the cases in several Eastern European countries, including Bulgaria, Croatia, Estonia, Latvia, Lithuania, Poland, Romania and Slovakia.
The right to choose freely
According to the report, the majority of informal carers (59 percent) are female. While women spend on average 17 hours per week on providing informal care, men spend an average of only 14 hours. Care is also provided in gendered ways. Women indeed tend to provide more demanding and intensive forms of daily caregiving (e.g. bathing and dressing, continence care, assistance with medical equipment or the management of multiple prescription medications), while men are far more likely to focus on care management, household maintenance, shopping or transportation. Informally assuming long-term care responsibilities usually goes hand in hand with adverse health, financial and social consequences, prompting the Eurocarers Director to call for a new approach to informal care: “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.”
The COVID-19 pandemic has increased the burden on both long-term care patients and their informal carers. Eurocarers conducted a survey of roughly 2,500 informal carers across Europe and published the results last April. One of the key findings is that more than 10 percent of respondents started to provide care as a result of the pandemic. Approximately 14 percent of carers and an equal number of care recipients have been infected by the SARS-CoV-2 virus. In addition, the survey revealed that the situation for informal carers was further complicated because of the COVID-19 pandemic, mainly due to social isolation, a lower quality of life, emotional exhaustion and poorer access to health and social services.
Using the attention
“But there is also a positive aspect to the COVID-19 pandemic,” remarks Stecy Yghemonos. “The issue of long-term care has now received more attention from politicians and society at large, and we must use this to achieve more support for informal carers in Europe in the future – but also to achieve better working conditions for professional carers.”
THE 10 STEPS TOWARDS CARER-FRIENDLY SOCIETIES ACROSS EUROPE
Eurocarers has worked out a strategy of 10 core steps to implement a carer-friendly policy environment:
1 Define and acknowledge carers
Informal carers are vital, both to the care of people with long-term conditions and disabilities in the community and also to the economy of EU countries. Yet, decision makers largely fail to meet their needs due to the use of narrow-focused definitions of informal care or the absence of such definitions in legislation.
2 Identify your carers
Despite growing momentum around care and caring, carers still form a largely invisible and undervalued workforce in many EU member states. When carers are identified early and properly supported, they are better able to continue in their caring roles and maintain a healthy lifestyle.
3 Assess the needs of your carers
Carers should have access to an assessment of the measures that might help make their life easier. This will allow the development of a personalised set of support measures which, in turn, can help support change. Carers’ organisations have a vital role to play in this process by engaging carers in co-designing these assessment tools and by supporting the dissemination and uptake process.
4 Support multisectoral partnerships for integrated and community-based care services
Integrating care, services and supporting activities means that the design and delivery of care is performed in a more effective manner, so that users receive a continuum of preventive, curative, rehabilitative and support interventions throughout the life course which are suited to their needs over time and are seamlessly available across different levels and areas of health and social systems. Carers should be central to the planning, shaping and delivery of services for the people with care needs and in relation to support for themselves. In this context, informal carers should be approached as partners in care.
5 Facilitate carers’ access to information and advice about care, caring and care-life balance
Carers often need to take on caregiving responsibilities without warning or planning. Most of them do not realise that they are carers and, when they do, they often struggle to access basic information about what it means to be a carer, and also about benefits and entitlements, support services, employment, carers’ breaks, training opportunities or the potential consequences for them and the cared-for person.
6 Pay attention to carers’ health and prevent negative health outcomes
Carers frequently suffer poor physical and mental health outcomes as a result of their caregiving activities, when not adequately supported. Early identification and support along with specific preventive measures are therefore essential to maintain carers’ health and well-being, prevent negative health outcomes and avoid creating a vicious circle where carers themselves become unwell and in need of care.
7 Give carers a break
Respite care is often perceived as the most important and common form of support to alleviate caregiving burden and stress. Respite care can provide carers with a break from usual caring duties for a short period or a longer time. Without respite, carers may face serious health and social risks due to the stress associated with continuous caregiving, and may also have little time for essential personal and social needs or feel isolated.
8 Provide carers with access to training and recognise their skills
Carer training promotes carer confidence and enables carers to provide better quality care for longer and in better conditions for themselves and the person they care for. The preventive aspects of well-trained and well-supported informal carers in avoiding or delaying hospital admission and long-term institutional care are well documented. Recognising, developing and validating the numerous – sometimes very technical – skills gained by informal carers while performing their caregiving tasks also offers great potential to improve the quality of life of carers and the person receiving their care, but also to contribute to the sustainability of our care systems and to the EU (female) employment objectives.
9 Prevent carers’ poverty and allow them to maintain an active professional/educational life
Taking on a caring role should not mean that people have to face financial hardship and social exclusion or give up work or education in order to provide care. Carers who want and are able to study or work should be enabled to do so, and should not be discriminated against. They should be supported at school/university and in the workplace to maintain their employment status. Carers should also have access to lifelong learning opportunities, further/higher education and skills development in ways that take account of their caring responsibilities. This is essential to avoid poverty and social exclusion and it is particularly important in the light of the gender pay and pension gap in Europe and also the EU objectives in the fields of education, employment and growth.
10 Adopt the carers’ perspective in all relevant policies
The success of initiatives aiming to address the needs and preference of carers largely depends on the interplay between a broad set of health and social policies. Yet, there is a clear need for better strategic planning and collaborative working between a wide range of services to ensure the effective delivery of co-ordinated support measures that meet the multidimensional needs of carers.