Linda Colling: Hidden epidemic

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IT’S the hidden epidemic. That’s why the understanding and awareness of dementia is “shockingly low”, as David Cameron said when doubling funding for research to £66m by 2015.

Not only is the understanding of this terrible disease shockingly low but also funding on research, with dementia now thought to affect 800,000 people in the UK, and the cost to society estimated at £23billion. Doubling the funding is still a pittance to what is spent on other conditions.

For every pound spent on dementia research, 12 times that sum goes on investigating cancer, says the Alzheimer’s Research Trust.

Stepping up research into cures and treatments is not before time, given in the next decade, the number with the disease is expected to top one million. Just as overdue is the introduction of screening from the age of 40.

Yes, it’s a national crisis – and it’s another scandal the way thousands of sufferers and their carers are going wanting – people like Margaret Younger, of Thorney Close.

Her husband Norman, 70, was diagnosed with dementia three years ago, and she says, getting help is like “banging your head off a brick wall”.

Like so many, no one told them anything of what services are available.

Margaret had to find Sunderland Alzheimer’s Society: “There’s no information. And if it wasn’t for the Princess of Wales Centre, I don’t know where I’d be and now with the cuts in funding, I don’t know what we will do.

“I count myself one of the lucky ones that I met Karen, the support worker, and now she’s had her hours cut.

“I don’t know how people cope without going to the Alzheimer’s group. If it wasn’t for them I don’t know what we would do – and now they are cutting back.”

There are far too many forgotten people, so scandalously in the same boat as Margaret, caring day in and day out for a loved one with no support.

A great gran Margaret, 65, soldiers on but says: “What I need is respite, a few hours when I can go out.”

Norman doesn’t have a social worker. She has been fighting to get him one but not everyone qualifies. The day care he qualified for has been cancelled.”

Together they go to the society’s memory cafes and lunch clubs. How long before this lifeline goes?

Ernie Thompson started the society in 1987. Two years ago he helped form a breakway group, Action On Dementia Sunderland, after the charity locked him and volunteers out when it became centrally managed.

He knows how alone people feel after a diagnosis. That’s why he has started a befriending service at Sunderland Royal. It is only on two wards but Ernie hopes to extend this.

As Ernie says: “Often people don’t know a great deal about dementia.

“The common impression is that a person become’s a bit forgetful, but a sufferer becomes forgetful of being able to dress or toilet themselves. How it affects people is something of a mystery to most people.”

Action on Dementia – contact Sheelagh Dilworth 07740 111182 or 567 3232.