EUFAMI and The Health Policy Partnership

It is a different world outside, where much of Europe has gone quiet under a third lockdown. Indoors, too, our homes may feel unfamiliar, reorganised into new online classrooms, office cubicles and hobby corners. The pandemic has been isolating for many people and provoked widespread anxiety. And for those who already live with depression, such negative effects are felt all the more keenly.

For a growing number of people living with depression, the home – among its many new roles – must also serve as a support centre. And while the outside world has slowed down, the demands on family carers (also called informal carers) – partners, parents, friends and children – are as intense as ever.

The average family carer of a person with a mental health disorder spends more than 20 hours a week on caregiving duties. Almost half never take a break from caring. Indeed, in the European Union, family carers provide almost 80% of care across all health conditions. Yet, less than one quarter have requested or received a formal assessment of their care needs.

The pandemic has intensified the burden on family carers

Depression takes a toll on family carers. In the inaugural Words to Actions policy report, we reported that around four in ten carers of people with mental health disorders feel they are unable to cope with the constant anxiety of caring, and one in three feels isolated. More than 30% do not share their caregiving duties.

As anxiety and isolation have become increasingly common over the past year, it is no surprise that the burden on family carers has intensified during the pandemic. Carers of people with mental illness have reported lower quality of life scores than before the pandemic, difficulties accessing support and experiencing problems managing their own health.

The COVID-19 pandemic has increased both rates of depression and its severity. According to an analysis from the UK Office for National Statistics, the proportion of people reporting moderate to severe depression doubled between 2019 and June 2020. This also means that more people are now having to care for a loved one with depression.

Carers need more support to give support

The pandemic has highlighted the pressure already faced by carers of people with depression – and the need to alleviate it. There are significant gaps in support for those carers. For example, the EUFAMI’s Caring for Carers (C4C) survey found that over 90% of family carers would appreciate additional support. They would welcome more opportunities to meet with others in a similar situation, as well as emotional, information and financial assistance. It is also important to recognise that carers of people with mental illness are at heightened risk of depression themselves: 15% of family carers are thought to experience depression, a figure that is likely to be underreported.

As we consider what essential services the health and social care systems will continue to provide during the pandemic and moving forward, we must ensure that carers receive the support they need. 6 October 2020 marked the first European Carers Day and on 7 November the European Parliament’s Informal Carers Interest Group celebrated its 13th anniversary. But recognition for the important contribution of carers should not be limited to a single day. They deserve appreciation not just for the essential and often selfless role they play for the ones they care for, but for their immense service and value to society. In a recent survey conducted by EUFAMI and the London School of Economics and Political Science, the total average economic impact of caring for a person with a mental illness was as much as €61,026 – €74,907 per carer.

With our health and social care systems struggling to provide care to a growing number of people with depression, we must protect and support family carers as an indispensable social resource. Their caring never stops, and neither should support for this essential group of providers in our society.

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This blog is the third in a series as part of the Words to Actions initiative. Words to Actions began in 2018 with the publication of a report from nine leading mental health patient organisations across Europe. This blog post was produced by The Health Policy Partnership. The original report and all subsequent Words to Actions materials were initiated and funded by Janssen. For full details, please see:

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