Vital: WE'RE NOT STUPID

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Byline: By Samantha Booth

FANTASY author Terry Pratchett has donated one million dollars to help find a cure for Alzheimer's, after he announced nearly four months ago that he has an early onset form of the disease.

The money is sure to give those with the condition a fresh hope for the future, especially as figures for dementia diagnosis, including Alzheimer's, are set to soar.

At the moment there are around 60,000 people in Scotland living with the condition but reports suggest that as people live longer and the full consequences of our binge drinking culture are revealed, that number could easily double in the next 10 years.

Which is why the work of the Scottish Dementia Working Group (SDWG) is so vital.

The group was founded six years ago by dementia patient James McKillop after he got frustrated by the lack of interest in what those with the condition had to say.

The aim was to raise awareness of dementia, give those with the condition a voice and let people with a dementia diagnosis know that life goes on.

James, 67, of Glasgow, said: "The group is about meeting with like-minded people to improve life for ourselves and for others that are coming after.

"I set it up to give people with dementia a voice and to try and dispel this idea that the condition means you are no longer relevant

"Everyone else from nurses to carers have their groups and organisation but we had nobody and I felt the message had to get out there that people with dementia can still have a life.

"We can have a normal life, but we can still have a life.

"Since my diagnosis my life hasn't changed that much and it is certainly still worth living."

The group, which was the first of its kind in the world, have achieved an amazing amount.

They have helped give people under NHS Lothian full access to a successful Alzheimer's drug, forced a pharmaceutical company to rethink an advert for a dementia drug because they believed it gave out a negative message and are in constant touch with health minister Shona Robertson about the issues which affect those with dementia.

Their work has also caused a stir in dementia care circles around the world.

In the last six years they have taken part in two Japanese documentaries about the issue, have inspired new dementia programmes in Mexico and Norway and have a German social worker coming to spend a month with them this summer to observe what they do.

Now, the group's 60-odd members are on a mission to change the world's perception of the condition they live with.

Not only are they battling to lift the stigma surrounding dementia, they also want to show that having the condition, in particular early onset dementia, does not mean they are no longer able to live a full and active life.

James, who was diagnosed in 1999 after forgetting how to do his job as a civil servant, insists that rather than being referred to as a sufferer he is known as a "dementia enjoyer" as he feels he now enjoys a better quality of life than he did before his diagnosis.

He said: "The term sufferer makes people think of people in the late stages of dementia who are totally dependent and unable to think for themselves.

"But everyone in our group is in the early stages of the condition and we are far from depressing, in fact there are always plenty of jokes and we all have a good time.

"Since being diagnosed I have met so many nice people and am doing things I never before had the chance to do.

"Of course, there are some things I can no longer do, like driving which I miss, and there are some things I need help with.

"But what I can do, I make the most of and since my diagnosis I have even learned new skills like how to use email. I have even taken up photography."

And amazingly the stigma surrounding dementia is so strong that many people treat those with the condition as stupid, incapable or irrelevant. …