Carers of terminally ill up to seven- times more likely to have mental health problems

Carers for people with cancer are between 5 and 7 times more likely to have mental health problems than the general population, according to a landmark new study.

The Dimbleby Cancer Care funded study identifies a major public health concern, according to the lead author Gunn Grande, Professor of Palliative Care at The University of Manchester.

The study, ‘Psychological morbidity* and general health among family caregivers during end of life cancer care: a retrospective census survey’ reveals 83% of family carers of people with cancer have clinically significant distress – compared to just 15% of the general population. The study retrospectively measured carers’ psychological health and general health during the patient’s last three months of life.

The study, which was supported by NIHR CLAHRC GM and carried out by the Universities of Manchester, Newcastle and Groningen in the Netherlands, has been published in the journal, Palliative Medicine. The team received responses from 1,504 carers through a national four-month post bereavement 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.

The survey revealed:

  • Psychological morbidity at clinically significant levels was substantially higher among carers than the general population (83% versus 15%), with prevalence 5-7 times higher across all age groups.
  • Overall carers’ general health scores were lower than population scores, median 75 (interquartile range 50-80) versus 80 but differences were more marked at younger ages.
  • Female carers had worse psychological morbidity and general health than male carers.

Gunn Grande, Professor of Palliative Care at The University of Manchester, led the study. She said: “We were aware that carers’ psychological health suffers when caring for the terminally ill, but we were surprised at the sheer scale of the problem. We found that the vast majority of carers suffered psychological morbidity at a level where further clinical investigation is recommended and where, for instance, their ability to concentrate, make decisions and deal with problems may be affected. If we can ensure that carers feel better supported, we are likely to reduce some of the more extreme stresses of caregiving, so that carers are more able to carry on their valuable work without being ‘broken’ by the experience”.

We were aware that carers’ psychological health suffers when caring for the terminally ill, but we were surprised at the sheer scale of the problem
Professor Gunn Grande

The Dimbleby Cancer Care Research Fund has awarded over £2.7million in funding since 2004 to research projects looking at all aspects of cancer care. Chair of the charity, broadcaster, Jonathan Dimbleby said:

“This latest research reflects what unfortunately we see every day through our work; caring for someone with cancer can have a huge impact on your own health. The role these carers play is vital, but they need better support, which is why Dimbleby Cancer Care exists.

“Caring for a loved one going through cancer can be both distressing and challenging and we are there to support them, be it through our information centres, our psychological support, complementary therapies and benefits advice teams or our recently launched Cancer Care Map website, which for the first time enables us to reach across the UK. It is clear from this research that ongoing support for carers is very much needed and would prevent a breakdown in caregiving and may ultimately, in the long term, produce cost savings for the NHS.”.

This is the second of three sets of findings to be published from the study. The first set, published last year showed that 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. The final results focusing on the economic value to society of their work will be published at a later date.

Dimbleby Cancer Care was set up in 1966 in memory of broadcaster Richard Dimbleby and is based at Guy’s Cancer Centre in Southwark, London. It provides practical and psychological support to people living with cancer and to their families and carers. The charity runs the UK wide online directory of support services www.cancercaremap.org which helps people locate care and support services in their local area wherever they are in the UK and has its own information and support centres at Guy’s Cancer Centre and Queen Mary’s Hospital, Sidcup.

Cancer is one of The University of Manchester’s research beacons - examples of pioneering discoveries, interdisciplinary collaboration and cross-sector partnerships that are tackling some of the biggest questions facing the planet. #ResearchBeacons


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