In this episode, our guest is Stecy Yghemonos, the Executive Director of Eurocarers, a network that brings together carers’ organisations as well as relevant universities & research institutes – a unique combination that enables evidence-based advocacy. Below is a short excerpt from the conversation. For more insight, please listen to the podcast, either via the player above or on Spotify, Apple Podcasts or on Google Podcast.

Agnes Uhereczky: Thank you very much for accepting our invitation to the podcast, Stecy. Would you please tell to the listeners who are informal carers? What are they doing? Your organisation, Eurocarers, is the voice of informal carers at the European level so how do we need to imagine the carers, who they are and what they do?

Stecy Yghemonos: Sure. Carers, based on the definition we use, which I should say is a definition that is being used by more and more people actually in these days, are people who provide usually unpaid long-term care to someone with a chronic disease, a disability, or any other long-lasting care needs, in addition to professional care services. We are essentially talking about families, but also friends and neighbours, and that last part of the group are extremely important because it also tends to be disregarded by policymakers, but in rural areas for example, or in rural regions in Europe, friends and neighbours play a very active role in the provision of long-term care. The care they provide is usually unpaid, however, there are some regions and countries where informal carers are recognized by public authorities, or at least, acknowledged, and compensated financially sometimes. And a typical carer in Europe, unsurprisingly, I guess, because that’s the issue that is being already addressed through your series is a woman. So there is a strong gender dimension, and it is usually a woman between 45 and 75 years of age.

Agnes Uhereczky: Thank you for this introduction. Listening to you and reflecting on what you have just said made me think of all the people who are having long-term health impacts from COVID-19, who are often referred to as the long COVID sufferers. Their number is just going to add up even more to the population that needs to be looked after.

Stecy Yghemonos: That is exactly right. The situation was already pretty complex before the COVID crises because as you already know, one of the key challenges we face in Europe is demographic ageing, and as a result of a growing prevalence of age-related diseases, chronic conditions, there is a growing demand for care and at the same time a sustainability challenge because obviously, the balance between those who contribute financially to the system through taxation and social security, and those who receive or benefit from the system is shifting, as a result of demographic ageing. And, so already before the crises, we could see how informal carers across Europe were facing more and more pressure because there is a tendency by public authorities to rely heavily on families, friends and neighbours who are seen as a free workforce. The point that we are trying to convey is that it is not a free workforce because there is a lot of negative impact stemming from caregiving, but I am sure we will get to that in a second. So what the COVID crises changed is that exacerbated those challenges because just like all of us, carers find themselves completely isolated as a result of the constraints of the lockdowns, but also as a result of the reduction of care services and support measures targeted at them. These supports are not always available, they don't exist in all countries and regions in Europe unfortunately, but we are making sure that that will change in the future. And, yes, it is more care and more intense care provided by carers and yet you are absolutely right, they are completely invisible in the media.

Agnes Uhereczky: There has been so much news coverage again about care homes, and the vulnerable populations, and yet family carers are looking after the most vulnerable, who are most vulnerable in the face of a COVID infection, so this must add, coupled with the isolation, so much stress and pressure on them, that is certainly really bad for their own mental health and health actually.

Stecy Yghemonos: Yes, absolutely. They are in the first line. They are, based on research, the main providers of long-term care in Europe.

According to some estimates, as much as 80 per cent of all long-term care is provided by informal carers in Europe, so they are a central element in the provision of long-term care. And they are in first-line and close contact with the most at-risk age group when it comes to the COVID pandemic, but many of them also belong to the at-risk group because of their age.

And, in terms of the impact of caregiving when not adequately supported because support measures help a lot when they are available but we see a stunning impact in terms of access to employment, and full-time employment, but in terms of poverty and social exclusion, because many carers tend to contribute financially to the cost of professional care, so they pay for medication, they also have higher utility bills, transportation costs and so on. And, also last but not least, we see a higher prevalence of health and mental health issues among non-working carers, compared to non-carers. So, there is a vicious circle where, again, when no adequate support is available, carers may very well become patients themselves. And, given the situation, we are in, I don’t think that it is wise for decision-makers to let carers who are indispensable become patients themselves.

Agnes Uhereczky: Why is it important for employers and even individual managers, as well as team leaders, to educate themselves more about caregiving and what this means, the magnitude of it, the roles and tasks of caregivers?

Stecy Yghemonos: It is extremely important for employers because ultimately it is a win-win. In fairness, it seems that a growing number of companies have come to realize that it is a win-win situation. It is a win-win because if you don't publicly support your employees with caregiving responsibilities, what you are facing is absenteeism, presenteeism, so people come to work but their mind is actually elsewhere, so they are not really productive, or staff reducing their working hours or leaving their employment altogether, and sometimes very experienced staff, given the age group, that I mentioned before, and all of that obviously has a huge cost on companies. And, so, what we see is, many employers now come to realize is, that it is probably cheaper to invest in measures to accommodate the needs of employees with caregiving responsibilities, then it is to deal with absenteeism, presenteeism, or recruitment for new staff members and training them. So, there are quite a few measures that have emerged and that could be included in Human Resources strategies and policies to successfully address the needs of employees with caregiving responsibilities.

Agnes Uhereczky: Have you come across some examples of initiatives that you have seen by either employers, NGOs, or policymakers that really stood out to you where you thought those can be a great example because it makes such a positive impact in the life of a carer?

Stecy Yghemonos: Sure, there are many good examples that are actually developed by employers themselves, so that is an important element because it means that good things also can emerge without necessarily a specific legislative process in place. So, on a voluntary basis, employers can actually take the lead and develop good measures targeted at carers. In terms of examples, what we see are practical measures, so the provision of flexible working hours, awareness-raising campaign to invite employees with caregiving responsibilities, to identify themselves as such, to feel confident about approaching their managers and say “well actually, I am facing challenges at home, and that impacts my work because I am a carer", and people should feel confident that they are able to do that in their company, and that will not come at the expense of their career or their advancement. The provision of part-time work on a temporary basis, longer care leaves provided by employers but also measures to try and minimize the financial disadvantages of being a care are among the initiatives that work. So for example, these can be paid emergency leave, or measures to minimize the income loss with working time reduction, so temporary part-time because of caregiving responsibilities and the employer accepts to cover the income loss for that particular period, paid leave, but also again practical support by for example organising information and counselling sessions during lunch breaks, care brokerage, so putting the employee with external support services, awareness-raising campaigns, promotion of positive attitudes towards the staff and managers. So, as you can see, there is a long list. And, there is actually a very interesting initiative, if I may promote the work of one of our member organisations, an interesting initiative put in place by I think a long time ago, perhaps in 2004, called Employers for Carers, put in place by Carers UK. What this programme does, is it works with companies as a bit of a consultancy service for HR teams. So, they go to companies and look at HR policies to adapt those to the needs of carers and if that can be adapted to or supplemented with additional measures to address the needs of carers. As a result of that initiative, there is now a long list of companies and sometimes big companies are involved in the initiatives, and those companies are becoming champions because, they see the benefit they reap out of those measures. So, I think this is an interesting approach which is based on a win-win and can be potentially replicated in other parts of Europe.