Alzheimer's is a terrible, degenerative brain disease which affects thousands of people in the region. Health Editor Barry Nelson investigates why a number of anti-dementia drugs may soon be unavailable on the NHS.

IVAN Garnham still can't believe it. The 78-year-old carer has been trying to understand why the powers that be want to deprive people like his wife of the one drug that appears to control her dementia.

Like more than 700,000 people in the UK, Hilary Garnham, a former college lecturer, has Alzheimer's Disease, an aggressive form of dementia which can produce dramatic personality changes.

When she was first diagnosed with Alzheimer's four years ago, Ivan found it increasingly difficult to cope with his wife's worsening symptoms.

"The worst thing is that people with Alzheimer's are aware of what is happening to them in the early stages. This makes them very confused, angry and aggressive," says Ivan, a member of the Derwentside Alzheimer's Disease Carers Group which meets every week at the Lamplighters Arts Centre in Stanley. "It is very upsetting, dispiriting and extremely difficult to deal with."

Not long after Hilary had been diagnosed with Alzheimer's, a consultant at the Derwent Clinic at Shotley Bridge Hospital prescribed a drug called Aricept, also known as Donepezil. Within a few weeks Ivan noticed the beginnings of a remarkable change.

"It wasn't immediately noticeable but when the drug had time to bed in you certainly noticed the difference," he says. "The situation at home is now very placid. The anxiety is gone, the anger has gone. My wife has quietened down so much compared to the problems I was seeing in the early stage."

The change he has seen in his wife, who is now much more manageable, makes the latest advice from NHS advisors NICE (National Institute for Health and Clinical Excellence) appear very odd to Ivan.

NICE has put the cat among the proverbial pigeons in the Alzheimer's world by issuing a draft guideline on a group of drugs called anticholinesterase, which includes Aricept. If these guidelines are confirmed later this year - and a decision is expected in late April or early May - it will mean that patients diagnosed with Alzheimer's or a number of related dementias will find it difficult to get access to Aricept until they are deemed to have reached a 'moderate' stage in the degenerative brain disease.

For NICE, there is simply not enough evidence to show that the drugs are "cost-effective". But to people like Ivan, not to mention the Alzheimer's Society, the charity which represents dementia patients and their carers, this flies in the face of experience. "This makes us wonder whether NICE has ever talked directly to the carers because they would tell them that Aricept should be prescribed as soon as possible after a diagnosis is made," he says.

He is equally baffled at a second draft recommendation by NICE that a drug called Ebixa (also known as Memantine), which has been prescribed to people in the later stages of Alzheimer's, will no longer be available on the NHS.

"I don't really understand why they use the term 'clinical excellence'. We shouldn't be trying to withhold drugs that help people, we should be doing everything we can to help people," he says.

According to the Alzheimer's Society, Ebixa is the only effective drug treatment for people in the later stages of the illness, reducing distressing behaviour symptoms, including aggression and agitation.

"What this will do is to force more people into care homes and they are closing the homes down everywhere," says Mr Garnham.

His views are echoed by Betty Grenfell from Tanfield Lea, County Durham. Another member of the Stanley support group, Betty can also testify to the beneficial effects of Aricept on her late husband Eddie, who died two years ago, aged 63, of Lewy Body Dementia, a terminal brain condition similar to Alzheimer's.

"He was put on Aricept not long after he was diagnosed as part of research at Newcastle General Hospital's Wolfson Institute," says 67-year-old Betty. "Just before he was put on Aricept, he didn't recognise anyone in the family and was causing havoc at home. A month later he knew everybody and his behaviour had really settled down."

"We saw a big difference in him. It settled down the aggression which was caused by frustration and fear. He was very frightened at what was happening to him."

The drug made it possible for Eddie to be taken out and about with his family. "The drug meant that he kept his social skills. If you took him outside nobody would know that there was anything wrong with him," says Betty.

Pat Ord, from South Stanley, another member of the support group, is also baffled at the draft guidance from NICE. "Aricept is a life-saver. It is wonderful what it does for them. I would hate to think what he would have been like without it," says the 72-year-old, who looks after her 74-year-old husband Norman, who has Alzheimer's.

The first sign that anything was wrong was when Norman took a wrong turning on a trip to Consett. "At first I wondered whether we were going the scenic route. After a while he pulled over and said he didn't know where he was. That was the start of it," says Pat.

Luckily, Norman was put on Aricept almost immediately by doctors at Shotley Bridge Hospital and it has helped his condition to remain fairly stable for the last four years.

"Considering the expense of all the research that has gone into developing these drugs, it is such a shame to think that some people won't get them if this goes through," adds Pat.

Allison Brown, who manages the Stanley group on behalf of the Alzheimer's Society, has been urging members and supporters to lobby their MPs about the NICE draft guidelines, as well as sending evidence to NICE directly.

"We are in touch with approximately 200 carers but we think there are more than 1,000 people in the Derwentside area who are affected by Alzheimer's or a related dementia," she says. "A lot of them are couples, some are family members, where a daughter may be caring for a brother or a mother. Often it is the husband who is the carer."

In general, many people are confused and frightened about the proposals, fearing that it will affect future access to drugs. However, it has been made clear that people already prescribed the drugs will continue to receive them even if they are banned from the NHS.

For Pat Ord, the evidence that Aricept can benefit people in the early stages of the illness is overwhelming. She wonders why she has read that the Government is able to donate £42m to combat tuberculosis in India, yet penny-pinches over a drug which appears to help thousands of people in the UK.

"It is wonderful what it does for patients with Alzheimer's, it seems such a shame," she says.

* People now have until February 13 to comment on the draft decisions and can do so via Nice's website which can be found at www.nice.org.uk