Mary, whose husband had Alzheimer\u2019s<\/p>\n
Mary\u2019s late husband, Richard, was diagnosed with early onset Alzheimer\u2019s 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 \u00a327,000 a year.<\/p>\n
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 \u00a32,000 a week.<\/p>\n
\u201cI\u2019m left with virtually no savings, living on my pension, working a bit and I have very good friends who I rent from,\u2019\u201d 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. \u201cI\u2019m a very positive, resilient person but I think I\u2019ve been through a really ugly tunnel with very little help.\u201d<\/p>\n
Mary also had to juggle caring for Richard with everyday tasks such as shopping and sorting bills. Though she is grateful for the support she has received from charities such as Alzheimer\u2019s Society, she wishes there was more guidance available to help carers manage their finances when a loved one is unexpectedly diagnosed with dementia.<\/p>\n
She feels dementia \u2013 a terminal neurological disease \u2013 is neglected by the system. \u201cIf it is not something you can give a drug to, you\u2019re swept aside. You have to sit quietly until you die and hope your friends and family look after you.\u201d<\/p>\n
She now worries about her children\u2019s future. \u201cIt\u2019s giving me sleepless nights. My children can\u2019t afford to buy anywhere and when they may need care, they won\u2019t have any savings.\u201d<\/p>\n
Mary is happy to pay more tax to help fund social care. \u201cWe pay insurance for our cars and no one complains,\u201d she says. \u201cWhy can\u2019t we pay insurance to take care of us when we\u2019re older?\u201d<\/p>\n
Annabel, whose son has Down\u2019s syndrome and is autistic and deaf<\/p>\n
Annabel\u2019s 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 \u00a3147.54 a week from his benefits to pay for his care, leaving him with very little to live on.<\/p>\n
As providers of home care, councils have the power to decide how much to charge for care. \u201cFred would be \u00a3147 a week better off if he lived in Hammersmith and Fulham, where they don\u2019t charge for home care, and \u00a347 better off in Wales, where the cost cap for care at home is \u00a3100,\u201d says Annabel.<\/p>\n
Annabel says it is not fair that most of Fred\u2019s benefits go on his social care.<\/p>\n
She believes the social care system needs proper government investment. \u201cCharging people on benefits for their care doesn\u2019t seem like a reasonable thing to be doing,\u201d she says.<\/p>\n
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. \u201cHe\u2019s been burning through thousands of pounds of savings from birthdays,\u201d she says.<\/p>\n
She worries there is less attention given to working-age people with a serious disability than to older people in need of care.<\/p>\n
She also criticises accusations that young people are \u201cscamming the system\u201d through disability benefits. \u201cI only know about people like Fred and I know they are not.\u201d<\/p>\n
Annabel has received advice from charities, such as Mencap, that support people with learning disabilities, and praises his carers who are \u201cdoing an unbelievable job given the circumstances\u201d.<\/p>\n
In the future, Annabel wants to see social care fully funded like the NHS.<\/p>\n
She is anxious about the future as her mother, who has dementia, had to sell her house and move into a care home. Yet Fred cannot provide for himself in the way her elderly mother can.<\/p>\n
\u201cAt least she could sell her home,\u201d Annabel says. \u201cIf you are born with a disability, you\u2019re never given the money. This is not how we should look after the most vulnerable in our society.\u201d<\/p>\n
Jayne, whose daughter has autism and complex mental and physical health issues<\/p>\n
After a lack of adequate support, <\/p>\n
Jayne\u2019s daughter Alice, 32, is autistic and has complex mental and physical health issues. Alice initially had care provided for her at home, which Jayne says was of \u201cvery poor quality with little understanding of her autism\u201d.<\/p>\n
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. \u201cIt was horrendous quality, with poorly trained and overworked staff. The place was in chaos. It was not how we expected it to be \u2013 somewhere caring and supportive,\u201d Jayne says.<\/p>\n
Jayne has to employ personal assistants to support her daughter. Photograph: Alicia Canter\/The Guardian<\/p>\n
\u201cIt was clear staff didn\u2019t have adequate training in autism, a lot were agency workers,\u201d she says. Alice was left with trauma and still experiences flashbacks from her time there, her mother says.<\/p>\n
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 led to her returning home permanently three years ago.<\/p>\n
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 in a part-time job, Jayne has to employ personal assistants to support her daughter. \u201cI\u2019ve 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.\u201d<\/p>\n
Jayne says she struggles to access emotional support, with charities overstretched. Her local carers\u2019 support organisation has had to reduce services, including scrapping its counselling service and cutting funding for hobbies and trips.<\/p>\n
She finds it difficult to talk about her life as a carer and the sacrifices she has had to make to meet her daughter\u2019s needs. \u201cIt breaks you to speak about life as a carer because I don\u2019t want to make her [Alice] feel like it\u2019s her fault.\u201d<\/p>\n
Jayne wants to see more cohesion between the NHS and social care. \u201cInstead of being there with our loved ones we are spending so much time managing bureaucracy,\u201d she says.<\/p>\n
She thinks social care reform should be supported by an increase in tax. \u201cWe shouldn\u2019t see it as money that results in nothing. We tend to forget about people who have a long-term disability or health issue,\u201d she says. \u201cThere\u2019s an assumption that you\u2019re old and you sell your house to pay for it. It can happen to you at a much younger age.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Mary, whose husband had Alzheimer\u2019s Mary\u2019s late husband, Richard, was diagnosed with early onset Alzheimer\u2019s disease in 2015…\n","protected":false},"author":2,"featured_media":717783,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[43],"tags":[102,2960,56,54,55],"class_list":["post-717782","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-health","tag-healthcare","tag-uk","tag-united-kingdom","tag-unitedkingdom"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/717782","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=717782"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/717782\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/717783"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=717782"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=717782"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=717782"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}