TELEVISION presenter Sally Magnusson has revealed her heartache at seeing her mother slowly deteriorate as she succumbs to the "wicked disease" that is dementia.
Magnusson said she has been watching her mother disappear for the last eight years, turning from a "vibrant, merry, intelligent, active, independent woman" to become a shell of her former self.
The BBC presenter and her two sisters said the torment over those years "has been more eye-opening and emotionally shattering than we could have believed possible".
And the Reporting Scotland star said she believes society is "sleepwalking" past the problem.
Magnusson's mother Mamie Baird is now 86 years old. She was once a journalist, a woman who loved to talk and joke.
But the woman she was has now been sucked out of her, Magnusson explained at the launch of a new dementia online resource at Stirling University yesterday.
She said: "To see her struggle for words, flail around in a suffocating mental fog and lose, bit by bit, every last iota of functional capacity; worse to see how keenly she knows she is losing all these things –although even now it most emphatically is her, sparks and flashes of her lovely personality and sense of fun do joyously remain – is not something I would wish on anybody."
The new online resource from the university's Dementia Services Development Centre aims to offer examples of good design practice for those treating dementia sufferers. It's a growing need.
The Magnusson family's experience is one shared by many people in the UK. It is estimated there are 750,000 sufferers here, with up to 18 million cases worldwide (a number likely to rise to 34 million by 2025).
"Those who say that dementia is the greatest health and social crisis of the century are sometimes dismissed as doom-mongers, but they are not exaggerating," Magnusson said.
"The cost of nursing is already more than 1% of global GDP. If dementia were a country, it would be the world's 18th-largest economy."
But she fears we are not taking the problem seriously enough.
"Caring for my mother at home, even only part-time in my case with the help of my sisters and latterly a team of wonderful carers, has been psychologically gruelling and physically draining," she said.
"How much worse for those who are caring alone and cannot afford extra help.
"I have been aghast to discover the level of support currently available for home carers.
"There are services of course, and they are better than they used to be, but I'm not sure how seriously anyone is grappling with the fact that this becomes a 24-hour disease, requiring 24-hour attention."
While emphasising she was not making any political comment, she added: "We all need to wake up to the catastrophic level of hidden need and distress in our midst."
However, yesterday's launch of the online resource to demonstrate dementia-friendly design by the Dementia Services Development Centre, was something to celebrate, she said, a good news story that "tells us life can be better along the way".
The online guide has been created by architect Ricky Pollock, partner in Edinburgh-based firm Burnett Pollock Associates. It is an attempt to catalogue dementia-friendly design, although Mr Pollock is keen to point out any design must take note of the individual sufferer.
Much of it often comes down to "very basic" things, he added. A black toilet seat on a white toilet, strong lights, not hiding food and drink in cupboards.
"If people can't see what it is then they can't understand it and with dementia when understanding is much more difficult things have to be supervisual.
"I've been in rooms and all the doors are exactly the same, including the electrical cupboard. If I have one glazed door and all the others are painted out so you don't see them it narrows it down and makes it easier to navigate."
The online resource means people all over the world will be able to pick up ideas to use in homes, care homes and hospitals, said Magnusson. "It means people in the earlier stages of dementia will have a better chance of continuing to enjoy life.
"Home carers will have a chance of knowing what is available so that they can badger the authorities ... I didn't know about the half of this stuff at the time that it could have helped us."
The resource would prove widely beneficial, she added. "It helps us – sufferers and carers alike – not to be quite so bewildered all the time by where the disease is taking us.
"Not to feel quite so alone and desperate. The sooner the authorities, too, start to pick up on these design ideas the better."
Magnusson's father Magnus Magnusson was the quiz master on the BBC TV's Mastermind for 25 years. He died in 2007.
The online resource can be visited at:http://dementia.stir.ac.uk/ virtualhome
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