New Study Reveals Huge Contribution of Carers of Terminally Ill

A landmark new study involving the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care, Greater Manchester (NIHR CLAHRC GM), has revealed that family carers of people with cancer are providing care beyond the safe working hours recommended to preserve their health and wellbeing.

The nationwide study of more than one and half thousand carers, which was conducted by Professor of Palliative Care, Gunn Grande (CLAHRC GM end of life programme academic lead), and  colleagues, reveals family carers of people with cancer on average provide almost 70 hours of care a week to look after their relatives in the last three months of life.

Funded by dedicated charity, Dimbleby Cancer Care, ‘The contributions of family care-giving at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures’, focussed on relatives who registered a death in May 2015.* The research team studied the work of carers by tasks including preparing food, shopping, cleaning, attending appointments and general administration; they revealed:

  • The main type of care provided was social/emotional support but carers also undertook considerable practical help, personal care and healthcare tasks.
  • Carers had an average of £370 out of pocket expenditure during the last three months of the decedent’s life.
  • A quarter of carers spent £100 of this on additional medical equipment and care supplies
  • One in six had ‘one-off expenses’ during their whole time care-giving with costs of £2,000
  • Most of the care in the study – around 75% – was carried out at home.

“This study for the first time quantifies the valuable hours carers give to their relatives and friends nationally in the final three months of life,” commented Professor Gunn Grande.  “Our figure of 69.5 hours a week is indicative of the huge contribution they make. This is a lot higher than the hours of care giving reported in the population in general and comes at a great cost to carers’ own psychological and physical health.

“Carers are a huge resource and provide vital support to people at the end of their life. The social and emotional support they provide is a huge commitment, but they also undertake a great deal of practical help, personal care and healthcare tasks. It is carers who are there 24/7. Community health and social care staff are simply unable to deliver care round the clock, which is why we need to invest in carers too.

Speaking of the study, Broadcaster, Jonathan Dimbleby, Chair of Dimbleby Cancer Care, which was set-up in memory of his father, broadcaster, Richard Dimbleby, in 1966, said:  “The research by Professor Grande and her team illuminates a really grave issue.  I have had personal experience of caring for someone with terminal cancer.  It is draining in every way.  Through the work of Dimbleby Cancer Care, we know how vital informal care is and the huge economic contribution it makes to the NHS and social services.”

He continued: “Building on research like this, the work we support at our cancer centre in the Guy’s Cancer Centre helps to ease the burden on patients and carers in a wide variety of ways – information, psychological support, complementary therapies and benefits advice – It is a very important and challenging task.”

Professor Grande added: “Carers need both support that gives them the know-how to look after the person who is ill and support to preserve their own health and well-being.  Health and social care staff can make a big difference in ensuring carers’ support needs are assessed and addressed. Additionally, workplace, respite and financial support can all play a meaningful part in supporting carers.”

This is the first of three sets of findings to be published. Results focusing on the emotional distress and wellbeing of the carers and the economic value to society of their work will be published at a later date.

* The paper, ‘The contributions of family care-giving at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures’, is available on request.  The research team received responses from 1,504 carers through a national postal survey in the autumn of 2015. The survey was sent via the Office for National Statistics to 5,271 relatives who registered a death in May 2015. Local carers groups helped shape the material.

For more information please contact Mike Spence, programme manager for our end of life programme.

Want to read a related blog? Then see ‘Family cancer carers deserve the role of expert partners in caring’ a blog from Rebecca Spencer, CLAHRC GM project manager for the end-of-life programme.