A hidden workforce, in need of help

Across the UK, hundreds of thousands of family carers are providing care for loved ones at the end of their lives. The role these carers play is vital – but they need better support.  

Latest research shows that end of life family carers have higher levels of anxiety, depression and general distress than other carers, and the general population.

How many end of life family caregivers are there?

It’s estimated there are around 500,000 family carers across the UK, providing end of life care every year. We have found that carers of people with cancer give a median of nearly 70 hours of care per week in the patient’s last months. That’s without including the broader network of family and friends who may be involved in caring for someone.

We don’t know yet how much this care is worth in monetary terms. Studies in this area normally focus on professional care, meaning there isn’t much data to tell us more about the unseen care work force. It’s also difficult to work out the equivalent cost of each hour of care that’s being given by families.

One report*   estimates there are 6.8 million people giving unpaid care for people living with all health conditions in the UK, which would be worth an incredible £132 billion every year. That’s close to the total of all annual health care spending in the UK. But we’ve yet to discover what portion of this unpaid family care is for people with a terminal illness.

Many end of life carers are women, caring for a spouse.
Many end of life carers are women, caring for a spouse.

Who are these family carers and how are they coping?

Family carers come from all walks of life, but the majority of end of life carers are women. Most are people caring for a spouse, and both patient and carer are often older people. But there’s also a large proportion of carers who are adult children caring for a parent.

Many studies show that end of life carers have worse physical health than some other carers or comparable groups. But it’s mental health where we can see a real difference. Family carers have considerably higher levels of anxiety, depression and general distress than other carers or the general population.

Why is this? Caring for a loved one at the end of their life can be both distressing and challenging. Carers often have to manage patients’ personal and practical care, their physical symptoms such as pain, and sometimes patient’s anxiety and depression, while dealing with their own feelings of loss. Not being professionally trained for the role, family carers often learn by trial and error – which can be extremely stressful. In addition, caring for someone at the end of their life can be isolating and physically tiring.

Going through a terminal illness with a loved one can take a huge toll on carers.

What support are carers getting?

Although the remit of palliative care is to provide support for the family as well as the patient, both practitioners and carers naturally tend to focus on the needs of the patient first. This means support for the carer is less consistent. Across the UK, there’s a lot of variation across the services available for carers. Under the Care Act 2014  , carers are entitled to an assessment by their local authority, but many don’t get this. In any case, it only really covers their social care needs, not healthcare support.

Last year, the Government undertook a wide-ranging consultation to examine the different types of support carers need during and after their role end. Unfortunately however we are still waiting for a response which will set out clearly how this group will be supported in the future, when we know there will be an even greater need for their care and skills.

In the meantime, this research shows there's no doubt that end of life family carers need better support.

What support do family carers need?

The support they need is twofold. Firstly, they need to be given the right information, know-how and skills to care with confidence. Secondly, they need support to preserve their own wellbeing, getting help with maintaining their own physical and psychological health. This includes getting breaks from caregiving, support with financial and work concerns, and other areas.

Better dialogue between family and professional end of life carers is vital – so we can understand how best they can work together, how professionals can support family carers and what solutions would work best.

Making sure family end of life carers are supported and can provide care to the best of their capacity will improve the support for the patient.

*Buckner and Yeandle, 2015

Gunn Grande is Professor of Palliative Care at the University of Manchester. She'll be speaking about her research on carers at the annual Marie Curie Palliative Care Research Conference with the Royal Society of Medicine on Friday 6 October. Book your place today. Registration close on 2 October. 

The study Uncovering the contribution, costs and economic value of family care-giving towards end of life: putting carers on the agenda was funded by Dimbleby Cancer Care and supported by the NIHR Collaboration for Leadership in Applied Health and Research and Care (CLAHRC) Greater Manchester. Read more in the research paper  .