A famous Beatles medley is playing in a church hall in the south London suburb of Croydon. The crowd sways and sings along, and an 80-year-old woman reaches out to hold her husband’s hand.
Paul has vascular dementia and can no longer speak, but he smiles every now and then as if he recognizes him. His wife, Jill, says that after his diagnosis they were sent home with nothing but an information booklet and the oppressive feeling that they were on their own as the NHS doesn’t have much to offer. A care worker comes twice a week for half an hour, but otherwise Jill takes care of Paul while she waits for heart surgery and worries about what they will do when she has surgery. He was recently hospitalized with an infection, and she found him “trying to get out of bed on his own because he didn’t know how to use the buzzer, and he was terrified.” But at least this therapeutic Singing for the Brain group, organized by the Alzheimer’s Society for people with dementia and their caregivers, is a weekly chance to get out of the house and be with people who understand.
“It’s really about the friendship,” says Peter Edwards, the group leader funded by Merton Council to lead today’s sing-along session. He has chosen Elvis, Queen, Carole King and many Beatles – which also makes them young again, stretching their lives before them, dancing with their loved ones. The volunteers handing out tea are unfailingly friendly, and there is an air of extraordinary tenderness in the room.
Care is, as the leader of the Liberal Democrats, Ed Davey, said in a moving election broadcast about caring for his severely disabled son: the story of millions. It’s the story of Keir Starmer, whose mother suffered painfully from a form of arthritis, and it was also David Cameron’s story during the six tragically short years that his son Ivan survived.
These intimate experiences deeply affected all three men and yet somehow Cameron still led a coalition – of which Davey was part – that cut the budgets of councils that deliver social care, while Starmer has yet to announce comprehensive plans to solve this problem.
Alongside the rise of AI and the threat from Russia, dementia is one of the hidden forces reshaping the British political landscape. Already almost two-thirds of the financing of the municipalities is only about social care for adults and acute children, which puts painful pressure on other priorities. But by 2040, so will the number of Britons with dementia is expected to increase by approximately 40%, from 982,000 people to 1.4 million. We don’t have enough nursing home beds and staff even now, but we will need many more. Meanwhile, the costs to the state are dwarfed by the costs to the patients themselves, draining savings to pay for the nursing care they would receive for free if they had cancer, and to the families left to pick up the pieces to pick up. The healthcare economy seems hopelessly bankrupt – and yet there is one bright spot on the horizon.
Two new drugs shown to slow the progression of Alzheimer’s disease – but unfortunately not in other common forms of dementia – are awaiting approval from medical regulators. Lecanemab and donanemab are not cures, but they can push the most horrific stages of dementia further into a future that many older patients will not reach, by suspending them at the point where a good life is still possible and thus reducing the chance of a good life. to reduce life so drastically. pressure on healthcare. Add to this a large-scale public health campaign teaching younger Britons that tackling diet, exercise and smoking can help prevent some cases of dementia, and all is not lost.
The problem, says Mark MacDonald, the Alzheimer’s Society’s deputy director for advocacy and systems change, is that only people who have been accurately diagnosed via a PET scan or lumbar puncture are eligible for the new drugs. Because the NHS does not have enough scanners, this is currently around 2%. That’s why the charity’s call this election is for better diagnosis and treatment and for more training for healthcare providers, not the bigger reforms that the major parties don’t want to talk about.
When Theresa May tried in 2017, Labor coined the deadly term ‘dementia tax’ for its manifesto plans to make people with assets over £100,000 pay for care at home. But the Tories did much the same to Andy Burnham in 2010, calling his call to fund social care through an inheritance levy a ‘death tax’. The issue has been endlessly weaponized but never resolved and now lies ominously in Labour’s letterbox. Although the apparent outgoing government originally promised to cap lifetime care bills at £86,000 And let most people keep the first £100,000 of their assets, two years ago Jeremy Hunt has scrapped that expensive promise back to 2025, essentially making it someone else’s problem.
There is a logic to financing healthcare by using the collectively acquired property of baby boomers. But putting everything down to individuals unlucky enough to develop dementia – the opposite of the aggregation of risk achieved by the NHS for other diseases – creates a frightening lottery of growing older. Ask Croydon carers what they want from a new government and the subject quickly comes up.
Sharon’s partner, Andrew, an ambulance worker whose memory began to fail in his 50s, died last year, but the friends she made in the singing group still draw her there. She grew up in poverty in the East End, worked in a council care home and did two cleaning jobs to get herself on the housing ladder. Now that she is disabled herself, she fears the consequences for her family if she eventually needs care. Her friend Ruth also fears losing the house if she cannot meet her husband Tony’s needs in the future; their adult son lives with them because he cannot afford to buy a property. “It seems unfair when you’ve worked all your life.”
But dig deeper and it turns out that much of what the Croydon group wants is heartbreakingly modest: better pay for care workers, help navigating the bureaucratic maze that hides the help they’re entitled to, more opportunities like this to help others meet in the same situation. Singing The Beatles for an hour seems like a small thing, easy enough every municipality that is teetering on the brink of bankruptcy axe. But it is a way that people cling to the half-remembered ghosts of happiness.