Around 8 in 10 unpaid carers in the UK say they feel “lonely or socially isolated”, new research shows, as charities call for carers to get regular breaks to help those feeling isolated.
Research by Carers UK, conducted as part of the ‘Jo Cox Commission on Loneliness‘, highlights how caring for loved-ones without adequate support can have a devastating impact on carer’s mental and physical health.
According to the results of the survey, 77% of carers said their mental health had worsened and 67% had noticed a decline in their physical health.
Charity Director of Age UK, Caroline Abrahams, said: “These figures from Carers UK show that the needs of unpaid carers are falling below the radar, with many experiencing a profound sense of loneliness and social isolation.
“Carers give huge amounts of time and energy to support loved ones who would otherwise struggle and the feeling of being ‘on your own’ makes life much harder for them.”
The research also found that certain groups were at a greater risk of developing physical or mental health problem, including young carers and those looking after disabled children.
When asked what they felt would make the biggest difference in reducing their loneliness and social isolation, 54% of unpaid carers said regular breaks would be beneficial to their health.
Others said better understanding from society, being able to take part in leisure activities, and financial support paying for social activities.
Carers UK and Age UK are calling for better support for unpaid carers and regular breaks to allow they time away from caring.
Caroline Abrahams said: “We need to do more for the carers whose needs are too often unseen.
“They deserve a regular break, just like the rest of us, and this must be factored into the proposals the Government has promised to bring forward to strengthen social care.
“In addition, we all gain from interacting with family and friends and unpaid carers need to be included, which may mean the rest of us have to be prepared to flex arrangements to suit them too.”
Helena Herklots CBE, Chief Executive of Carers UK, said: “Loneliness is a powerful, sometimes overwhelming, emotion which all-too-many carers experience in silence. Caring touches all our lives yet society and public services often fail to grasp how isolating looking after a loved one can be.
“Caring for someone is one of the most important things we do but without support to have a life outside caring, it can be incredibly lonely worsened by financial pressures, poor understanding from friends and colleagues, and a lack of regular breaks.
“Given the significant mental and physical health benefits of breaking this isolation, we’re asking everyone to start a conversation about caring.
“Jo Cox said that “young or old, loneliness doesn’t discriminate”. We are honoured to be working as part of the commission to work towards her ambitions for a more understanding and supportive society and to be remembering Jo in our creative writing competition with the Jo Cox Poetry prize.
“Together, we can show how starting the conversation can help break isolation.”
Darren and Lesley:
The couple have four daughters – Gabrielle, 19, Olivia, 17, Fleur, 10 and Amélie, 9 who has a rare medical condition which causes multiple disabilities.
Lesley struggles to balance a full-time job while caring for her daughter and struggling to stay on top of household bills. Darren has been made redundant.
The costs associated their daughter’s care has resulted in the couple accruing substantial debts.
Darren said: “Amélie is absolutely fantastic, she’s an absolute joy. But stress levels are through the roof.
“Amélie needs care 24 hours a day, every day and because of her medical needs and the lack of professionals who also have the sign language skills to communicate with Amélie it is almost impossible to get respite care.
“We have battled to get Direct Payments from the council to buy in care support and have been given the equivalent of 16 hours at £7.20 an hour. If we could find the right care services, I very much doubt it would be available at that rate.
“But if I could change anything it would be the financial burden. Even if everything in the house is going well, there is still that financial worry hanging over us.
“I think people assume that there are loads of benefits supporting families like us. But that’s not the case at all. Now Lesley works full time with extra shifts and I receive a Carers Allowance. I’d love to work, but show me the job I could do alongside the care Amélie needs.
“We used to have a good social life. I played rugby for my local club and made some great friends there, many of whom are still very supportive. But now buying clothes and socialising are no longer a priority or affordable for either of us.”
“As a carer you get used to putting on a brave face. I certainly did, especially at the beginning. I didn’t know what had hit me – I suddenly found myself stuck indoors 24/7 with a woman who looked like my wife, but felt like a stranger.
“I lost my business of 40 years and was going bankrupt as I couldn’t work anymore as a painter and decorator, the job I loved and had done for 50 years.
“Being at home all day drove me nuts. I needed something to occupy my mind, so I bought my first computer. I didn’t have a clue how to use it. It took me about two years learning bits and pieces off different people.
“One day ‘Carers UK’ came into my mind out of the blue – I must have read about them somewhere. That’s how I found the Carers UK online forum.
“It took several months before I dared post, but once I took the plunge the response I got from other carers was amazing. These kind, wonderful people knew what it’s like to feel as though you’ve lost your own identity because of caring.
“It was such a relief to talk to people who cared about what I was going through and understood how I felt. They did more to help me than they will ever know.”
“Tom and I have been married for more than 50 years, we have five children together. Tom retired early and for around a decade we enjoyed that stage of our lives. It’s hard to pinpoint exactly when Tom became unwell but it slowly became clear that something was wrong. He would get lost whilst driving as his spatial awareness suffered.
“Tom was eventually diagnosed with Alzheimer’s and vascular dementia. He never discussed his diagnosis or what might happen – that was just his way.
“He was then diagnosed with Apraxia and sometimes needs help to stand. I was struggling to support him in such a physical way, but it was still a shock when a consultant said he should go into a temporary nursing home. I had never thought about care homes.
“I still had hope that Tom would recover enough to be able to live with me. I moved and made adaptations to a new flat, but he was never well enough. I had to put his welfare first and accept what I could and couldn’t manage. I now have a lot of pain in my arms from trying to lift him.
“Now he’s settled, I know Tom is happy. He still enjoys listening to music and watching cricket. He often asks me who I am, but I know something in him recognises me. The other day he asked me who I was and I told him I was his wife and he said, ‘Oh, I don’t need one of those!’
“I do have a bit more time for me now and I’ve got back into singing, which I enjoyed before. It feels strange to be able to go out to the shops without thinking. I still organise my days around caring for Tom, which hasn’t changed.
“At times I do feel lonely. You never get used to going home to an empty flat, after having a big family. At very sad moments I feel like a widow. My husband is there but he’s lost to me – he doesn’t laugh with me anymore.
“Support from my family, especially my children and sisters has really kept me going. Organisations like Carers UK have also been so valuable – the online forum has allowed me to get in touch with other carers and share tips and support.”
Disclaimer: Case studies taken from Carers UK website.