In Europe, 80 percent of all long-term care is provided by informal carers - individuals who provide (usually unpaid) support to someone with a chronic illness, disability or other long-lasting health or care need, outside a professional or formal framework. In many cases, these carers provide their assistance without recognition or financial support; this in turn can negatively impact their own health, social and economic wellbeing.
This is why, in 2007, the European Parliament Informal Carers Interest Group was set up. It aims to give carers a voice, to monitor and analyse EU policy developments in order to identify their impact on carers and to propose and advocate concrete action for improving their day-to-day situation.
“Importantly, nearly one in five carers were unable to reconcile paid work and caring responsibilities during the pandemic, while a fifth have seen their income fall”
This Interest Group has been particularly concerned about the impact on carers of the COVID-19 crisis. The pandemic has affected all societal areas and groups in a variety of ways; there have been consequences for the economy, for employment, for health services, for young people and old people and for mental health; all of these have been amply documented since the start of the outbreak.
However, not much has been published on the impact on carers to date; therefore, we warmly welcome a recent study from Eurocarers, the European network representing informal carers and their organisations, in collaboration with the Italian Institute of Health and Science on Ageing (IRCCS-INRCA).
The findings are based on some 2500 questionnaires submitted by informal carers in 16 countries, looking into their experiences as carers of older, frail or disabled people across Europe during the COVID-19 crisis.
This study has yielded some interesting findings, such as the fact that over 10 percent of respondents started to provide care as a result of the pandemic.
Social participation and networking, quality of life, mental health and well-being, access to health and social services for both the care recipient and the carer - all of these were impacted. The average number of hours providing informal care increased by almost 20 percent.
Moreover, informal carers - particularly women - have had to intensify their caregiving activities; there was a greater need for emotional support, remote communication, practical help and care coordination at a time when support from, and access to, health and social services was reduced. The measures imposed by the pandemic - such as social isolation and containment measures - further complicated and exacerbated the situation.
A quarter of respondents reported difficulties in accessing public or private care services for themselves, while more than a third faced difficulties in accessing services for the care recipient.
Over half of respondents indicated a clear lack of support for their caregiving, while a third stated that the crisis had had severe consequences on their employment status; they either became unemployed, had to reduce the numbers of working hours/tasks or were unable to work due to COVID-19 or other illness. Importantly, nearly one in five carers were unable to reconcile paid work and caring responsibilities during the pandemic, while a fifth had seen their income fall.
In order to provide better support for carers in times of a pandemic, public and private services, NGOs and carer organisations provide a range of helpful support services. These include practical information and advice, guidance on how to access care in the case of COVID-19, companionship to combat loneliness as well as psychological and emotional support.
However, many carers did not have access to these measures. It is clear that a variety of policy and practical measures need to be put in place if carers are to be supported, not simply during a pandemic but also at other times. We are all aware that long-term care needs are on the increase (due to an ageing society, increased life expectancy and other demographic developments) while formal and informal care resources are under increasing pressure.
“The strategy should work for greater recognition of the importance and contribution of carers - for their families, their communities and for society and public finances”
Therefore, the Informal Carers Interest Group is calling for an EU Strategy on Care and Caring, to address all aspects of formal and informal care provision. Such a strategy should help ensure dedicated support and improve the situation for informal carers.
In addition, it should actively address the current shortfalls in the care sector, including staff shortages, equal access, quality and affordability of care services and eHealth development.
The strategy should work for greater recognition of the importance and contribution of carers - for their families, their communities and for society and public finances.
It could focus on the development and strengthening of work/life balance policies with an emphasis on increasing the possibilities of working remotely. It could call for pension credits that take into account the time and effort dedicated to caregiving tasks in order that they become part and parcel of social security systems and social inclusion measures.
It could address better provision of, and access to, social and health services as well as to reliable information and guidance. Importantly, carers should be involved in the design of those measures and policies that are intended support them, to ensure that these respond effectively to their specific needs.
There are several possible ‘points of entry’ at EU level, such as the follow-up to the Green Paper on Ageing, the Action Plan accompanying the European Union Pillar of Social Rights and the recent report on Long-Term Care, issued by the Social Protection Committee.
We, as an Interest Group, will continue to act as carer champions, to ensure that these points of entry are be capitalised upon and thus - to safeguard the choices and support that carers need to enable them to care.