#HumansCare | Stecy Yghemonos, Executive Director, Eurocarers

For this #HumansCare story we spoke to Stecy Yghemonos, Executive Director of Eurocarers, the European network representing informal carers and their organisations. Stecy gives us an insight into the situation for unpaid family carers in Europe and explains how Eurocarers supports carers and ensures that the work they do is made prominent in areas of policy.

Hi! Please tell us a little bit about yourself. Where are you from? How did you come to work for Eurocarers? What makes you so passionate about caring?

Hi, my name is Stecy Yghemonos and I am the Executive Director of Eurocarers, the European association working with and for family carers. I am a Belgian national. I was originally trained as a communication specialist (translator and journalist) but, following my studies, I quickly realised that I really wanted to work in a sector contributing to social good. That led me to a first job in an NGO, 18 years ago.

Since then, I have been given the chance to act as a Project, Advocacy and Communication Manager in various organisations working to improve and harmonise EU policies in the fields of participative democracy, children’s rights, global health, health equity and, finally, care and caring. The richness and multidisciplinary nature of caring makes it a particularly fascinating topic. Caring is also a profoundly humane activity which tends to be ignored or uncredited due to economic considerations.

“I am convinced that a Global Carers movement is not only essential to achieve our common goals but it is unstoppable and bound to emerge eventually”

Can you tell us a little bit about caring in Europe and the particular challenges facing family carers there? How has COVID19 impacted carers in particular?

Research has demonstrated that informal carers across the EU play a crucial role in the provision of care to people with long-lasting needs (chronic diseases, disability, age-related dependency, etc). According to some estimates, as much as 80% of all care in Europe is provided by unpaid carers (i.e. family, friends and neighbours), with women providing the lion’s share of care as daughters (in law) and wives/partners. The estimated economic value of this unpaid informal care is gigantic and recent data suggests that attempts to replace informal by formal/professional care would amount to creating a second formal care system and – as we know – funding the first one is already a challenge. Against this backdrop, it will be very difficult to meet the growing care needs of an ageing population without acknowledging the central role played by millions of informal carers across Europe.

However, the provision of informal care without proper support can have severe 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 may be forced to reduce their working hours (involuntary part-timers) 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. So, we cannot over rely on carers to remedy all of our care systems’ weaknesses.

The important role played by carers across Europe were made particularly apparent during the COVID-19 crisis. The crisis has increased their isolation and deprived them from many of the tools at their disposal to maintain an acceptable balance between their social, professional and caregiving responsibilities (e.g. home care services, respite care, etc.) This is a situation that cannot be sustained in the long run.

“Carers also tend to neglect a healthy lifestyle and the prevalence of mental health problems among carers is 20% higher than among non-carers”

How are the challenges for carers in Europe similar/different to those for carers globally?

Firstly, many of the challenges facing care systems are common to most countries of the world. Additionally, the negative impact of informal care on carers’ working and living conditions is also a common issue at a global level.

Secondly, many carers – wherever they live – do not become carers out of choice but because of a lack of alternative professional options or as a consequence of deeply engrained social, cultural and historical constructs whereby it is normal for families – and women in particular – to take care of their own and assume most of the caregiving tasks. While (intergenerational) solidarity is a beautiful thing which should be nurtured, it becomes a problem when it is imposed on people and comes at the expense of carers’ life prospects. Carers 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; just like people needing care should have the right to choose who they wish to be their carers.

Finally, we should not forget that the highest attainable standard of health is a fundamental right of every human being. Yet, evidence shows that – in most countries – it is effectively impossible to provide universal access to long-term care without the central contribution of informal carers.

For all of these reasons, I think there is a strong rationale for an international movement of carers. Having said that, it is clear that a gradient exists when it comes to the development, financing and policy momentum surrounding care and caring at the moment. So, while the challenges facing carers and their environment may be similar across the world, the political appetite and point of departure for policy reforms may be slightly more manifest in Europe compared to other parts of the globe.

“Caring is a profoundly humane activity which tends to be ignored or uncredited due to economic considerations”

Tell us more about Eurocarers and how you work to support carers.

The Eurocarers network is structured as a federal-style organisation. The secretariat is positioned as a knowledge-broker between carers and organisations that represent them, academics, policy-makers and a long list of stakeholders that are relevant for the achievement of our common objectives. The role of our secretariat therefore consists in facilitating the transfer and exchange of intelligence about care and caring from where it is available to where it is needed, thereby supporting co-development and social innovation.

To do this, we benefit from a partnership with the European Commission (signed in 2014), which allows us to play a leading consultative role in the implementation of the EU 2020 strategy on issues related to the development of adequate, sustainable and equitable long-term care services across the EU.

Since 2009, Eurocarers also acts as the secretariat of the European Parliament’s Interest Group on Carers, which brings together more than 30 MEPs from 11 member states. It provides us with access to a broad and powerful coalition that can act as an internal pressure group within the European Parliament. In addition, when action for the Interest Group as a whole is not appropriate, Eurocarers is able to call and rely on its individual Members to support policy initiatives (propose amendments, ask Parliamentary Questions, host and chair meetings, etc.)

Can you tell us three key changes Eurocarers has been able to bring about for carers?

First of all, I would say that our work has contributed to placing care and caring prominently in policy areas that, at first glance, do not relate to care per say but have an impact on the daily life of carers across Europe. The fact that an unprecedented number of EU policy initiatives now make explicit reference to carers illustrates what we have achieved to date. The Green paper on ageing, the work-life balance directive, the Gender Equality Strategy, the Beating Cancer Plan, the Blueprint for a digital transformation of health and care are only but a few examples of policy initiatives calling for more support for carers.

The EU Directive on work-life balance for parents and carers, adopted by the Council of the European Union in June 2019 and to be transposed by member states by August 2022, can arguably be considered a breakthrough for the European carers’ movement. It indeed introduces new rights for all informal carers across Europe in the form of a carer’s leave of 5 days per year as well as flexible working conditions for employed carers. The introduction of a legal concept of ‘informal carer’ will have repercussions in all European countries and can be used as a basis to advocate for better recognition and better support to carers. Eurocarers has fought hard for more than 2 years to ensure that carers would be included in the directive and continues to monitor closely the Directive’s implementation.

Lastly, as part of our communication strategy and in close collaboration with our member organisations, Eurocarers launched the first-ever European Carers Day campaign in 2020 – the day itself being celebrated on the 6 October each year. The general objective of the European Carers Day is to coordinate and foster national efforts to raise awareness on the Carers’ issues under a pan-European structure. The aim is to help the European carers’ community to capitalize on existing actions and enable/facilitate new initiatives among less-advanced parts of Europe. The effort is therefore a continuous endeavour, with peak activity revolving around the 6th October of each year and specific themes selected by our network on a yearly basis. For more information, please visit www.carersday.eu.

What role does Eurocarers play internationally, beyond the EU, in raising the profile of carers?

Our strategy is based on the idea that a combination of local, national and international evidence-based advocacy actions is required to make a lasting and positive difference in carers’ lives across Europe. We therefore aim to occupy all of these spaces via our network of in-country members and partners, our privileged links with EU institutions and stakeholders but also through our regular collaborations with international organisations, such as the OECD – as regards research and policy analysis, the WHO – on the promotion of person-centred and community-based care, or the United Nations Economic Commission for Europe (UNECE). These international exchanges allow us to place our work in the broader context of the United Nation’s Sustainable Development Goals and, in particular, Sustainable Development Goal (SDG) 5 on gender equality and female empowerment and its fourth target: to recognise and value unpaid care and domestic work through the provision of public services, infrastructure and social protection policies and the promotion of shared responsibility within the household and the family as nationally appropriate.

How essential do you think a Global Carers Movement is in achieving recognition and support for carers?

I am convinced that a Global Carers movement is not only essential to achieve our common goals but it is unstoppable and bound to emerge eventually. As a first-hand observer of the European model, I am well placed to observe how our commonalities and differences can make us stronger and richer, when we come together. After all, this is both the spirit of the EU (United in diversity) and the foundation of our network.

What are your ultimate hopes for carers in the future?

I hope that care and caring will ultimately be seen and promoted as values that should be nurtured in our societies and that carers will cease to face negative consequences and discrimination as a result of their solidarity and humanity.