Who cares for the carers?
Dementia 6.5 million people in the UK are currently caring, unpaid, for an older, disabled or ill relative or friend; 700,000 of whom are caring for someone with dementia.
More people are caring for a loved one than ever before
The majority of care provided in the UK is not by doctors, nurses or care workers, but by family and friends. Whilst caring for a loved one can be very rewarding, it can also be challenging. Over 2 million people take on a new caring role every year and many struggle to access the information and support to do so without falling out of work, struggling financially, or seeing their own health suffer.
As our population ages and people live longer, often with long-term health conditions like dementia, the number of people needing care will continue to rise. As a result, more and more of us will be called upon to care for a loved one.
A decline in support is pushing families to breaking point
At a time when more people than ever are providing care for a loved one, they are doing so against reduced support from the social security system and a squeeze on the availability of local care services – pushing many families to breaking point. Our public services need to adapt to this evolving world with a step-change in the support available for families.
A reduction in the provision of local care services is preventing many carers from having a life of their own outside of caring. From our research, we know that 2 million people have given up work or reduced their hours to care, with half citing problems with accessing suitable care services as a factor. Carers have told us that care services which are inflexible, unreliable or unaffordable can make working alongside caring impossible.
“As my father’s health has deteriorated we have needed additional care. Whilst I assumed this would ease my stress and consequent ill health, in reality it has created additional stress and aggravation of my mental and physical health, with ‘no show’ visits, shorter than noted visits, and seemingly little knowledge of how to deal with a person suffering from dementia, despite saying they have done a course.”
The impact of caring for someone with dementia
From our research, we know that 9 in 10 people juggling work and care for a loved one with dementia report not receiving a break from caring, 1 in 6 have received no practical support, and only 1 in 5 got advice and training from health professionals. When asked what would make the biggest difference to them, carers cited practical support from care workers who are trained to work with people with dementia, help managing and coordinating care, better quality care services, and care services that are available outside of working hours.
“The lack of ability to leave the house, have a break, go on holiday, has taken its toll. I have not been able to visit friends, family, it has added to my stress, impacted on my relationship with my partner, had a negative effect on my ability to work… I’m essentially trapped at home.”
The emotional, physical and financial pressures of caring for a loved one with dementia can be exacerbated when carers don’t have the right support in place or don’t know where to turn to get the right advice. 9 in 10 people looking after someone with dementia are more stressed as a result of their caring role, with half experiencing depression, and 1 in 3 are struggling to make ends meet.
“I had mental breakdown as social services would not provide the help to keep my mother at home with me.”
“I have borrowed money in order to meet bills as I have taken a significant reduction in income due to my caring role. I can only work at a much lower status. As I had previously been in a managerial full time position, this has had a significant impact on my life.”
“Last time I was at the Doctors I did not bother with the prescription to save £8.20. I could not afford it.”
Carers make a valuable contribution to society
The unpaid care and support provided by people caring for someone with dementia saves the UK economy £11.6 billion a year. If these families aren’t supported to care well for both themselves and their loved ones, they will be unable to continue in their caring role, meaning the NHS and other public services will be forced to step in. With budgets already stretched to their limits, this could bring them to their knees.
Given that our health and care systems will continue to rely heavily on unpaid care as our population ages, the central role unpaid care plays in our health economy and the cost of replacing it must be better understood. By 2017, the number of older people needing care will have outstripped the number of working age family members able to provide it, so there has never been a more crucial time to look at what carers need now and in the future.
What can be done to improve support for carers?
Carers UK wants a society that respects, values and supports carers. Our vision is a world where caring is valued, where carers have a choice about caring and are able to care without putting their own lives on hold. Where carers do not have to face financial hardship as a result of caring for someone and have choices about whether or not to work alongside caring.
We hope that a number of key Government programmes, specifically the forthcoming Carers Strategy and existing Dementia 2020 challenge, will deliver strengthened practical and financial support for carers, improved recognition for caring and sustainable improvements in health and social care.
The right information, advice and support at the right time can transform families’ lives. Carers are doing more than ever to support others; we must ensure that they get the support and recognition they need and deserve.
“The impact of mum moving to a home has given me my life back. In the space of a few short months, mum’s dementia had rapidly progressed and I had become anxious, resentful, irritable and sad and felt ashamed that I was unravelling at a dizzying speed. I now take mum out three times a week, go with her to appointments and I am there if needed. I feel like a human being again.”
For more information:
Adviceline: 0808 808 7777 / email@example.com (Mon-Fri, 10am-4pm)
Carers UK forum: www.carersuk.org/forum
About Carers UK
Carers UK is a charity led by carers, for carers – our mission is to make life better for carers.
- We give expert advice, information and support
- We connect carers so no-one has to care alone
- We campaign together for lasting change
- We innovate to find new ways to reach and support carers
For practical advice and information about caring, contact the Carers UK Adviceline on 0808 808 7777 (10am-4pm, Monday-Friday) or email firstname.lastname@example.org. Our listening service is available Mondays and Tuesdays, between 9am-7pm.