Dani Garavelli: Society's huge debt to dementia carers

Cancer used to be the disease that cast the darkest shadow over the public imagination; now, arguably, it's dementia. The condition is terrifying on a personal level: is there a scarier prospect than that of your mind fragmenting, leaving you dislocated and detached, physically present, but mentally absent, like a skin that has been shed? It is terrifying for the carers who have to cope, not only with the gradual erasure of the person they once loved, but with the demands of looking after someone who has lost the capacity to perform the most basic human functions.

At Tannadice a banner appeals for free care for dementia sufferers under 65 in the name of former Dundee United player Frank Kopel. Picture: Alan Harvey/SNS

But with the number of UK sufferers set to rise to over 1 million by 2025, it is terrifying on a societal level too. Already, the NHS and other services are struggling to cope, with the cost to the economy estimated at £26 billion a year. Newspapers talk of a “timebomb”, but it’s more like a toxic cloud, spreading slowly across the landscape.

Nor is the problem merely one of demographics. Dementia is more common amongst the elderly, but it is possible to fall victim to it in your 40s, 50s or 60s. Last week, new ISD Scotland figures showed the number of people under 65 being treated for the condition had increased by a third in just six years (from fewer than 600 in 2009 to 808 last year).

Facing up to a dementia diagnosis is a terrible thing for those who have lived long and fruitful lives, but imagine being ambushed by the disease in middle age when your children are still teenagers and you are looking forward to an active retirement. Imagine having to watch your mother/father/husband/wife fade out when they should be in their prime.

On the website www.youngdementiauk.org relatives of dementia sufferers under 65 talk about how the disease has affected them. They demonstrate remarkable fortitude, but their stories are still brutal; they describe childhoods cut short, careers sacrificed, dreams crushed, lives held in abeyance.

Take Madeleine, who had recently moved in with Steve when he was diagnosed at the age of 49. By the time they married in 2008, he was only just capable of repeating his wedding vows and, by 2009, he could say and understand very little. “We got two Chelsea season tickets next to each other,” Madeleine writes. “We didn’t need to speak we just enjoyed the experience together and the regularity of it.”

Then there’s James, who remembers becoming irritated with his mother because she had started chewing with her mouth empty. He was 18 and knew nothing of dementia. In fact, he didn’t realise how ill she was until his father died six years later. “It was only then friends told me that when he was at work, they’d find her sitting in the dark in the living room, waiting for him to come home,” he writes. James vowed she’d never be alone again, but the strain of keeping that promise was enormous.

“Mum got day and night mixed up, and we’d find her packing suitcases for an imaginary holiday at 3am, or getting dressed for a lunch date at 4am. I remember tying string to [her] bedroom door and putting it on my finger so I’d know if she left her room,” he writes. Others talk of dementia sufferers’ angry outbursts, of the terror of them going missing and the heartbreak of having to accept that they have to go into residential care.

Just how much carers sacrifice in the battle to keep their relatives at home is evident; in doing so, they not only demonstrate their love, they relieve the state of a massive burden. But in Scotland, younger dementia patients experience unfair discrimination. While over-65s are eligible for free personal care, such as help with dressing, feeding and personal hygiene, under-65s are not. Though the support provided is not always sufficient for people’s needs – and many families are still forced to buy in extra – it is an improvement on England, where provision is means-tested.

For the past few years, Amanda Kopel has been campaigning for free personal care to be extended to younger people in Scotland. She has told how caring for her late husband Frank, a former Dundee United footballer, who was diagnosed at 59, took a heavy financial toll.

Before the diagnosis, the Kopels had two incomes, but they were both forced to give up their jobs when he became ill. At the same time, their living costs rose. Frank’s poor circulation meant the house had to be kept warmer, so the heating bills went up. He lost the sight in one eye, his mobility was impaired and his double incontinence meant he had to be changed six or seven times a day. Eventually, Amanda was forced to pay £350-a-month for him to receive personal care in his Kirriemuir home, though she had only her pension and a small carers’ allowance to live on.

Scottish Health Secretary Shona Robison has said she is committed to “examining” the possibility of extending free personal care to the under-65s. Of course – at an estimated cost of £300 million – implementing “Frank’s Law” would be expensive. But as the number of younger dementia sufferers grows, a lower limit of 65 seems increasingly unjust and arbitrary.

Those who look after people with Alzheimer’s, particularly those who make it possible for them to continue living at home, are doing society a service and they should be given all the support we can muster. Easing their financial plight won’t compensate for their ordeal, but it is one less thing to worry about.

Given adequate resources, caring for a dementia sufferer can have its rewards. Here’s James again, on the five years he and his four siblings – who were fortunate enough to be able to afford to pay for extra help – spent with their mother. “We still had many happy, hilarious moments with her, right to the end of her life,” he writes. She died peacefully at home on 17 February, 2011, a few hours after I turned 30. If there is such a thing as a good death, I’d like to think she had it.”