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A groundbreaking new report from the University of Sheffield and Marie Curie highlights the severe financial strain faced by unpaid caregivers of individuals living with terminal illnesses. The report, which estimates that up to 762,000 people across the U.K. provide unpaid care for someone at the end of life each year, reveals that up to 15% of these caregivers are living in poverty.
The research also sheds light on the financial hardship faced by those caring for someone living with a terminal illness, with 13%–15% of caregivers who live with the person they are caring for—an estimated 22,500 people—living below the poverty line. Alarmingly, this number dramatically increases in the year following a bereavement, rising to between 22% and 32% depending on the poverty measure used. Factors such as funeral costs, loss of benefits and pensions, housing insecurity, and challenges to employment contribute to this alarming increase.
The report, conducted by the University of Sheffield, University of Leeds, and Loughborough University, also provides the first-ever U.K. population-level estimate of the number of end-of-life caregivers. Professor Clare Gardiner, Professor of Palliative Care at the University of Sheffield, emphasized the financial consequences of caregiving, noting, “While we have always known that caring has financial consequences, this is the first time that research has shown this financial burden persists into bereavement, pushing many caregivers into poverty at a time when they are already facing the significant challenges of grief and bereavement.”
Caring for a terminally ill loved one often takes a toll on the caregiver’s physical and mental well-being. The report reveals that caregivers frequently face financial burdens, having to take unpaid leave, change jobs, or even leave the workforce entirely to meet the demands of caregiving.
One such caregiver, Audrey Buckham, 64, from County Durham, shared her experience caring for her husband, Eddie, who was diagnosed with pancreatic cancer. “Before all of this, Eddie had a really good wage. I worked for the NHS full-time, then went down to part-time so I could look after him. He got PIP [Personal Independence Payment] and ESA [Employment and Support Allowance], and we had to both apply for Universal Credit, but because I was working, they took my wages off what he was getting, so he was only getting £39 a month,” she explained.
The financial strain eventually led Audrey to declare bankruptcy. “I didn’t have enough money to pay all the bills, and the credit cards… that’s when I had to declare myself bankrupt,” she added. Nearly three years later, Audrey continues to deal with the consequences of that decision.
In response to the findings, Marie Curie is urging the U.K. Government to take action. The charity is calling for an extension of the Caregivers Allowance entitlement from two months to six months after a bereavement. It also advocates for the introduction of a new statutory right to paid Caregivers Leave under the U.K. Government’s Employment Rights Bill, helping caregivers balance their responsibilities between work and care. Additionally, Marie Curie proposes a State Pension-level income guarantee for working-age individuals living with a terminal illness to provide better financial support for both them and their household.
Dr. Sam Royston, Executive Director for Research and Policy at Marie Curie, commented, “This report highlights the harsh reality of those who give up so much to care for the people they love at the end of their lives. Not only does evidence consistently show that the presence of an unpaid caregiver leads to better experiences for people at the end of life, it also reduces costs and pressures on wider health and care services.”
Disclaimer: The findings mentioned in this article are based on research conducted by the University of Sheffield, University of Leeds, and Loughborough University. The report is intended to raise awareness about the financial burdens faced by caregivers and provide policy recommendations to address the challenges they face. Readers are encouraged to review the full report for detailed information and insights.
