In a church hall in suburban Croydon, south London, a familiar Beatles medley plays. 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 occasionally as if in recognition. His wife, Jill, says they were sent home after his diagnosis with nothing but an information booklet and the sinking feeling that they were on their own, since there’s nothing much the NHS can offer. A care worker comes in for half an hour twice a week, but otherwise Jill looks after Paul while waiting for heart surgery herself, and worrying about what they’ll do when she has her operation. Recently he was hospitalised with an infection, and she found him “trying to get out of bed on his own because he doesn’t know how to use the buzzer, and he was terrified”. But at least this therapeutic Singing for the Brain group, organised by the Alzheimer’s Society for people with dementia and their carers, is a weekly chance to get out of the house and be with people who understand.
“It’s about the friendship, really,” says Peter Edwards, the group leader funded by Merton council to conduct today’s singalong. He’s chosen Elvis, Queen, Carole King and lots of Beatles – whatever takes them back to being young, lives stretched out before them, dancing with their sweethearts. The volunteers doling out tea are unfailingly kind, and an air of extraordinary tenderness pervades the room.
Care is, as the Liberal Democrats’ leader, Ed Davey, said in a moving election broadcast about looking after 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 David Cameron’s story too for the six tragically short years his son Ivan survived.
These intimate experiences have profoundly affected all three men and yet somehow Cameron still led a coalition – of which Davey was part – that cut the budgets of councils delivering social care, while Starmer has yet to announce comprehensive plans to fix it.
Alongside the rise of AI or the threat from Russia, dementia is one of the hidden forces reshaping Britain’s political landscape. Already almost two-thirds of councils’ funding goes on adult and acute children’s social care alone, painfully squeezing other priorities. But by 2040, the number of Britons living with dementia is forecast to swell by about 40%, from 982,000 people to 1.4 million. We don’t have enough care home beds or staff even now, but will need many more. Meanwhile, the costs to the state are dwarfed by the cost to sufferers themselves, draining life savings to pay for nursing care that if they had cancer they’d get for free, and to families left picking up the pieces. The economics of care seem hopelessly bust – and yet there is one bright spot on the horizon.
Two new drugs shown to slow the progression of Alzheimer’s – though sadly not other common forms of dementia – are pending approval from medical regulators. Lecanemab and donanemab aren’t cures, but could push the most horrible stages of dementia further into a future that many elderly sufferers won’t reach, suspending them at the point where a good life is still available to be lived and so drastically reducing the pressure on care. Add in a massive public health campaign teaching younger Britons that tackling diet, exercise and smoking can help prevent some cases of dementia, and all isn’t lost.
The snag, says the Alzheimer’s Society’s associate director for advocacy and system change, Mark MacDonald, is that only people accurately diagnosed via a PET scan or lumbar puncture are eligible for the new drugs. Since the NHS doesn’t have enough scanners, right now that’s about 2% of them. Hence why the charity’s request this election is for better diagnosis and treatment and more training for care workers, not the bigger reforms the big parties don’t want to talk about.
When Theresa May tried in 2017, Labour coined the lethal term “dementia tax” for her manifesto plans to make people with assets of more than £100,000 pay for care at home. But the Tories did much the same to Andy Burnham in 2010, dubbing his call to fund social care via a levy on inheritance a “death tax”. Endlessly weaponised but never resolved, the issue now sits ominously in Labour’s in-tray. Though the seemingly 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 shunted that expensive pledge back to 2025, in effect making it someone else’s problem.
There’s a logic in funding care by tapping the collectively amassed property wealth of baby boomers. Yet loading everything on to individuals unlucky enough to get dementia – the opposite of the pooling of risk the NHS achieves for other diseases – makes a fearful lottery of growing older. Ask the Croydon carers what they want from an incoming government, and the subject quickly bubbles up.
Sharon’s partner, Andrew, an ambulance worker whose memory started to fail in his 50s, died last year, but the friends she made in the singing group still draw her back here. Growing up in poverty in the East End, she worked in a council care home herself and did two cleaning jobs to haul herself on to the housing ladder. Now disabled herself, she’s frightened of the consequences for her family if she ends up needing care. Her friend Ruth is also frightened of losing the house, if in future she can’t cope with the needs of her husband, Tony; their grownup son is living with them because he can’t afford to buy a property. “It seems unfair when you’ve worked all your life.”
Yet dig deeper, and much of what the Croydon group wants is heartbreakingly modest: better pay for care workers, help navigating the bureaucratic maze that conceals whatever help they’re entitled to, more chances such as this to meet others in the same situation. An hour of singing the Beatles seems a small thing, easy for any council teetering on the edge of bankruptcy to axe. But it’s one way people cling to the half-remembered ghosts of happiness.
Gaby Hinsliff is a Guardian columnist
