The writer is author of “Extra Time: Ten Lessons For Living Longer Better”
They dwell among us, but we don’t see them. They are out of sight, warehoused behind the walls of care homes or in front of the TV. There are 55mn people in the world with dementia; almost a million in Britain. But we can’t bear to look.
Every month I check my aunt’s bank account to see how much money is left to pay for the care home in which she has now lived for three years. There is no vestige left of the person she was: the inspirational headteacher who used to love playing with my children. She doesn’t recognise any of us; not even the God she used to pray to every night. Luckily, her index-linked teacher’s pension helps pay for wonderful people to tend to her round the clock.
Others are less fortunate. Up and down the country, there are men and women in their seventies and eighties, struggling to cope with fading spouses. Tiny wives grappling to manoeuvre larger husbands while the rest of us turn away, in horror, because the deepest fear within us is that we too will end like this.
There is currently no cure for Alzheimer’s or any other form of dementia. One drug may potentially slow the disease, but nothing yet can stop it. Cheery talk of “technology that can help” really means electronic monitoring. Walking down a street in Japan a few years ago, I heard a loudspeaker blare out an announcement that a lady in a red shirt was missing. Japan’s public warning system, originally put in place for typhoons, is increasingly used to search for the wandering elderly.
Technology can’t replace the heroic cast of relatives, neighbours and care workers who tend to the disabled of all ages. But relatives are on their knees, neighbours are increasingly cut off from each other, and professional care workers can often earn more working for Tesco. A thoughtful report by the Fabian Society, commissioned by the Labour party and the health service union Unison, urges a future Labour government to boost care worker wages within a “National Care Service”, which would knit councils, private providers and the NHS more closely together.
For 25 years, governments of all stripes have promised to fix the social care system. It has never been an election winner, because it affects a largely invisible minority. But as more of us take on responsibility for relatives, there is a chance to change the conversation. The Fabian Society imagines asking disabled adults and frail pensioners how they want to be cared for, not just “done to”. It argues that those who are disabled from birth, or very sick at the end of life, should be fully funded by the NHS not shunted on to council budgets: at present, anyone with assets over £23,250 must pay, with local government arranging and funding the rest. Options in the report for tackling the lottery of care costs that can hit some families hard include co-payments that could echo Japan and Germany’s well-run social insurance systems.
In 1997, Tony Blair told the Labour party conference that he didn’t want people to have to sell their homes to get long-term care. In 2019, Boris Johnson said the same. Both got stuck. Theresa May was forced to U-turn in 2017, after suggesting that homes should contribute towards care costs. But an ageing population changes everything. If homeowners don’t pay, who should? I sold my aunt’s house to pay for the best care we could find. We need a grand bargain: an insurance we all pay into and can all take out from.
There is some good news. The incidence of dementia is actually falling in rich countries, though the overall numbers are still rising as populations age. Our own individual risk of getting dementia has fallen about 13 per cent a decade for the past three decades, in parallel with improvements in heart health. There is growing evidence that some cases of dementia can be prevented or delayed by tackling obesity and high blood pressure, reducing smoking, and doing sustained exercise in mid-life. The Lancet Commission thinks that a third of cases could be prevented or delayed this way.
Such findings rarely make their way into reports about social care. But they signal that we should be far more ambitious for keeping people independent. Dementia is only one aspect. Falling over and breaking something is the single biggest reason why older people lose their independence and end up in care homes — falls cost the NHS £2bn a year. But exercise programmes can substantially cut the risk of falling by making people stronger.
For decades, the NHS has paid lip service to becoming a wellness not just a sickness service. It hasn’t happened. Meanwhile, doctors and nurses’ unions resist any suggestion that care workers (not their members) might take on some of this work. Most GPs stopped visiting care homes years ago, claiming it was not their responsibility. District nurses are overstretched. Care workers are left to decide whether to call an ambulance. In the pandemic, many took on tasks like injecting insulin and dressing wounds. That should be recognised and paid for.
These issues are creeping up on us. Turning away is no longer an option. A better deal for care workers is vital. But if we don’t find a cure for dementia, my generation will also want an escape route. Who will be brave enough to give us that right?
camilla.cavendish@ft.com
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