‘You have to sit quietly until you die’: The families failed by England’s social care system

Mary, whose husband had Alzheimer’s

Mary’s late husband Richard was diagnosed with early onset Alzheimer’s disease in 2015 at the age of 55. She had to quit her job as a fashion designer to care for him and paid for 15 hours of care a week, amounting to nearly £27,000 a year.

When Richard went into a residential care home in 2024, the couple were forced to sell their house in London to meet care bills of £2,000 a week.

“I’m left with virtually no savings, living on my pension, working a bit and I have very good friends who I rent from,’” says the 67-year-old from Kent. They had worked hard to build a good life, and it was frustrating to give it all up, she says. “I’m a very positive, resilient person but I think I’ve been through a really ugly tunnel with very little help.”

Mary also had to juggle caring for Richard with everyday tasks such as shopping and sorting bills. Though she remains grateful for the support she has received from charities like Alzheimer’s Society, she wishes there was more guidance available to help carers manage their finances when a loved one is unexpectedly diagnosed with dementia.

She feels dementia – a terminal neurological disease – is neglected by the system. “If it is not something you can give a drug to, you’re swept aside. You have to sit quietly until you die and hope your friends and family look after you.”

She now worries about the future of her children. “It’s giving me sleepless nights. My children can’t afford to buy anywhere and when they may need care, they won’t have any savings.”

Mary is happy to pay more tax to help fund social care. “We pay insurance for our cars and no one complains,” she says. “Why can’t we pay insurance to take care of us when we’re older?”

Annabel, whose son has Down’s syndrome, and is autistic and deaf

Annabel’s 27-year-old son Fred lives independently with the support of carers who help with his daily living. His local council, North Somerset, charges him £147.54 a week from his benefits to pay for his care, leaving him with very little to live on.

As providers of home care, councils have the power to decide how much to charge for care. “Fred would be £147 a week better off if he lived in Hammersmith and Fulham where they don’t charge for home care, and £47 better off in Wales where the cost cap for care at home is £100,” says Annabel.

Annabel and Fred whose social care costs are deducted from his benefits.

She believes the social care system needs proper government investment. “Charging people on benefits for their care doesn’t seem like a reasonable thing to be doing,” she says.

Annabel supports Fred with his phone bill and funds activities. This year he will run out of his own money so she will have to pay for all of his expenses not covered by his benefits. “He’s been burning through thousands of pounds of savings from birthdays,” she says.

She worries there is less attention given to working-age people with a serious disability than to older people in need of care.

She also criticises accusations that young people are “scamming the system” through disability benefits. “I only know about people like Fred and I know they are not.”

Annabel has received advice from charities like Mencap that support people with learning disabilities and praises his carers who are “doing an unbelievable job given the circumstances”.

In the future Annabel wants to see social care fully funded like the NHS.

Annabel is anxious about the future as her mother, who has dementia, had to sell her house and move into a care home. Yet her son, Fred, cannot provide for himself in the way her elderly mother can.

“At least she could sell her home,” she says. “If you are born with a disability, you’re never given the money. This is not how we should look after the most vulnerable in our society.”

Jayne, whose daughter has autism and complex mental and physical health issues

After a lack of adequate support,

Jayne is the mother of 32-year-old Alice, who has autism and complex mental and physical health issues. Alice initially had care provided for her at home which Jayne says was of “very poor quality with little understanding of her autism”.

At age 18, Alice was treated for her mental health in a specialist hospital. She was later placed in a council-funded residential home in Sussex run by a private provider. “It was horrendous quality, with poorly trained and overworked staff. The place was in chaos. It was not how we expected it to be, somewhere caring and supportive,” Jayne says.

Jayne, who is a carer for her daughter Alice, 32, says social care reform should be paid for through tax rises Photograph: Alicia Canter/The Guardian

“It was clear staff didn’t have adequate training in autism, a lot were agency workers,” she says. Alice was left with trauma and still experiences flashbacks from her time there, her mother claims.

After being deemed unable to live at home, Alice went back into hospital. Jayne often received calls to collect her daughter and bring her back home which eventually led her to return home permanently three years ago.

Alice gets 14 hours of support for home care but this does not cover the 24-hour care she requires each day. As a result, alongside caring for Alice and working a part-time job, Jayne has to employ personal assistants to support her daughter. “I’ve had to become an employer and do HR which has added to the amount of work that I have to do. I felt I had no choice because of the existing care.”

Jayne says she struggles to access emotional support, with charities overstretched. Her local carers’ support organisation has had to reduce services, including scrapping its counselling service and cutting funding for hobbies and trips.

She finds it difficult to talk about her life as a carer and the sacrifices she has had to make to meet her daughter’s needs. “It breaks you to speak about life as a carer because I don’t want to make her [Alice] feel like it’s her fault.”

In the future, Jayne wants to see more cohesion between the NHS and social care. “Instead of being there with our loved ones we are spending so much time managing bureaucracy,” she says.

She thinks social care reform should be supported by an increase in tax. “We shouldn’t see it as money that results in nothing. We tend to forget about people who have a long-term disability or health issue,” she says. “There’s an assumption that you’re old and you sell your house to pay for it. It can happen to you at a much younger age.”