“We were an invisible frontline during the pandemic, but actually we were invisible before and we remain invisible,” says Aisling Harmon, a dedicated family carer with a 20-year journey in caring for both of her parents.
“I never expected when I started caring that it would become a 20-year experience, although I’m very happy to have done that,” reflects Aisling.
Aisling's journey began in 2000 when her father started needing constant care after a stroke. As fate would have it, her mother, initially the caregiver, was diagnosed with a rare leukemia in 2002, becoming a care recipient herself. Her father was diagnosed with vascular dementia in 2004 and Alzheimer’s disease in 2006. Aisling then relocated from the United Kingdom of Great Britain and Northern Ireland to Ireland to provide the shortfall in care for her parents.
“In 2014 my father went into a nursing home; he survived for a further 3 years until the age of 84,” she says.
Aisling’s mother developed Parkinson’s disease in 2013 and then dementia in 2019. “The post-pandemic 2022–2023 period was a tough time for my mother, and I wanted to be with her towards the end of her journey.”
Aisling’s situation is not uncommon. Around 32 million women across countries in the European Union provide care to a family member, friend or neighbour every week. Women make up 52–66% of all informal carers across European Union countries, providing on average 17 hours per week.
Lack of support for informal carers
Having to fill gaps in access to care and support, informal carers such as Aisling wear many different hats. “You learn to become the social worker, the physiotherapist, the occupational therapist,” she explains. This comes with multiple challenges, spanning from emotional and physical to social and financial, often catching carers off guard. This places carers under cumulative pressure, with limited support and information to navigate their care journey.
“It had a significant effect on both my physical and mental health. Support for the carer is very minimal,” shares Aisling.
Informal carers are already 20% more likely to experience mental health issues compared to non-carers. This situation is aggravated for women, who tend to provide a higher intensity of care every week and must balance their caregiving role with other aspects of their lives, such as paid work and childcare. Providing care over an extended period, in particular, can have a lasting detrimental effect on carers’ health and well-being, which may continue once the caregiving role ends.
Recognize informal carers as part of the home care workforce
The hours dedicated to caregiving often go unnoticed, with women trading their paid work, leisure and rest time to provide care.
“I think many informal carers don't identify as carers or realize what a contribution they make,” shares Aisling. Informal carers provide 39 billion hours of care annually in the European Union alone. Replacing this care via formal services would require an additional 19.5 million full-time workers. Women carers are far more likely to reduce their paid working hours or drop out of the labour market entirely to provide care. This is often done without financial support, pension credits, sick leave, or income to supplement lost hours. In the longer term, this can put informal carers at risk of poverty, especially in the absence of sufficient social protection schemes.
“At times, you are giving on average 51–52 hours a week to your caregiving on top of working. Sometimes, when services are absent, up to 120 hours a week. That is a real challenge I hadn’t factored in,” she says.
Moreover, the contributions women make through informal care run deeper than economic value alone. Aisling highlights the huge role carers play in supporting the recovery of family members, but also in ensuring dignity and quality of life and death. Women bring compassion and empathy to their caregiving roles, helping to foster a culture of love, solidarity and support within families and communities.
Policies are needed to recognize and celebrate the immense contribution of women carers and to support and empower them in their caregiving roles. Investing in financial equality and mental health support, improving access to information, promoting flexibility in working arrangements, and integrating informal caregiving with community-based services and care workers are some of the measures that can help achieve this.
“Without informal carers, the health system would collapse,” she adds. For the sustainability of care systems, the recognition of women’s immense contributions, and the promotion of healthy, loving communities, we must invest in supporting, protecting and empowering informal caregivers.
WHO support to countries
WHO/Europe collaborates closely with European and national caregivers' organizations to raise awareness of the support needs of informal caregivers and facilitate the exchange of knowledge and best practices among European countries and regions. Recognizing the growing demand for support and information from informal caregivers, WHO/Europe is developing an open-access training course tailored specifically for them. Additionally, WHO/Europe is supporting countries in enhancing coordination between formal and informal caregivers, ensuring that caregivers' perspectives are integrated into approaches for measuring quality of care and assessing long-term care services.