Ken Clasper struggled with dementia, but a specialist drug gave him an improved quality of life. Dan Parton spoke to him.

Ken Clasper vividly remembers the moment he realised he had dementia. It came when, in his role as an engineer at Oxford University, he went to make a routine check on a distribution board one morning.

“I opened the door and I hadn’t got a clue what I was looking at,” Ken recalls. “I couldn’t tell what was live, what was neutral, what was earth. It was like a tin of spaghetti had been thrown into it – it didn’t make sense. I just slammed the door shut and went back to the office. I was close to tears. I realised everything was falling apart.”

If final confirmation were needed, it came soon afterwards when the phone rang: “I sat there with the door locked staring into space. Then the telephone suddenly rang and this lady said she wanted to speak to me. I didn’t recognise the voice. I didn’t know who it was, so I just put the phone down. Then it went again and the lady said: “Dad, what’s wrong? It’s your daughter, Claire, why won’t you speak to me?” That was the end – the floodgates opened. I didn’t know what to do.”

Ken had been aware that his memory had been failing him since he’d caught viral pneumonia two years previously – even to the point of using a Dictaphone to help him remember things – but had carried on regardless.

After these incidents Ken sought medical advice. But while he was almost certain it was dementia, doctors were reluctant to confirm it. Dismissing Ken’s symptoms as stress and depression, they said it would pass and he would be fine in time.

Ken did not accept this and sought a second opinion. Eventually, after some months of waiting, he was diagnosed with Lewy Body disease – a type of dementia similar to Alzheimer’s.

After he was diagnosed, Ken moved back to his native Chester-le-Street in Durham, giving up his job and house, which was owned by the university.

He is dismissive of the standard of care and support he received in Oxford, but praises the services he has had in the Northeast. While he had to be re-diagnosed – doctors in Oxford lost his notes, he says – everything about the disease was explained to him, and in addition he was told about potential medication and given pointers to local support groups – something that did not occur in Oxford.

He bemoans the postcode lottery for care, adding that he has heard anecdotal evidence of others having more problems getting a diagnosis than he had. “Everybody seems to go through a different process; some poor souls never actually get a diagnosis."

“There is nothing standard in this country as far as treatment is concerned.”

The drugs do work

Indeed, Ken experienced another example of the postcode lottery when it came to drug treatment. While in Oxford, he was refused Exelon – a drug that increases the amount of a chemical called acetylcholine in the brain, which leads to increased communication between nerve cells– because “I wasn’t ill enough”. But in the northeast, Ken was offered it.

The effect was swift and Ken’s quality of life improved measurably. “It was like walking out of a fog,” he says. “There was no other way to go, I had to take medication because life was utter hell and it was the only positive way out of it if it worked. And it did work, so thank God for that.”

“It doesn’t work for everybody, but not all medication works; aspirin or the Pill doesn’t work for everybody, but they still insist on dishing it out."

“Surely if they are going to cut down on a thing like this, which is a basic necessity, then they should look at other medication and do the same."

“It’s very sad, people who’ve worked all their lives and then become ill through no fault of their own, the government says ‘get stuffed you can’t have medication’, which is not even worth £1,000 per year.”

For the enhanced quality of life it has given him, including his independence, Ken believes it is well worth the cost.

On yer bike

But Exelon only slows the progress of the disease and Ken admits that the thought of the later stages of dementia terrifies him, although he does not dwell on it. “I take every day as it comes,” he says. “I have a strong wife and daughter – when I was first diagnosed they wouldn’t let me sit and think about it – they got me out and carrying on."

“It’s not a nice illness. I’m fine today and I was fine yesterday, but other days it’s not so good, but that’s a fact of life.”

He is also keeping active. In June, Ken is embarking on a coast-to-coast bike ride from Whitehaven to Sunderland with his son. He will be raising money for the Alzheimer’s Society and hoping to raise awareness of dementia at the same time.

“I was asked to do it and stupidly said ‘yes’ – I went to bed that night and thought ‘my God, what have I done?’ But I’m looking forward to it now. I was very nervous but now I’ve seen the information I’m into the frame of mind for it and it will be nice to get out there. It’ll be hard work but I’m training for it.”