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Dementia and the fight for precious time



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Published Date:
02 May 2008
George and Enid Russell were looking forward to retirement when they first noticed something was wrong.
The signs were small, ones most strangers would have overlooked, but after 40 years of marriage they were enough to make the couple worry what the future may hold.

"It was 12 years ago and I was in hospital recovering from a knee operation," says George, now 74.

"Enid could drive, but I noticed she was coming to visit me on the bus. When I asked her why she just said it was easier that way, but it was quite out of character. She had always been a perfectionist and when I got back home things just weren't quite right, she was putting things in the wrong cupboards and was becoming a little forgetful."

After a series of tests, the Russells, from Bradford, were told that Enid was showing the first symptoms of Alzheimer's and, with no known cure, the prognosis wasn't good. Neither had any experience of the disease, which now affects one in 14 over-65s, and together they tried to fill the gaps in their knowledge.

Agreeing to take part in a series of drug trials, Enid found herself on Aricept, the drug which recently hit the headlines when NICE announced it would no longer be available to those in the earliest stages of the condition because it simply wasn't cost-effective.

Yesterday, the Court of Appeal ordered NICE to review the policy, branding the restrictions as "procedurally unfair" and with the drugs costing around £2.50 a day the ruling questioned exactly how the organisation had come to its conclusions.

Recently, 73-year-old Enid has become increasingly confused, but George firmly believes that Aricept gave the family what he describes as 10 wonderful years and a decade of memories which he fears would otherwise have been lost to dementia.

"We've had a lot of years of happiness, a lot of fun to look back on," he says. "It was a bit of a struggle in the beginning, because after the trial had come to an end we discovered that our health authority didn't prescribe it. We were stuck in the middle of a post code lottery.

"During the trials, Enid took a number of different drugs, but many of them had made her quite sick. Aricept was the first one which really seemed to make a difference and, thankfully, our GP fought our corner.

"When I heard NICE had decided not to prescribe it to people in the early stages, it just seemed crazy – you don't break your leg and then go to the hospital a year later asking for it to be put in plaster, do you? Also the idea that £2.50 a day was too much to spend is slightly sickening, it isn't even the cost of a packet of cigarettes.

"People like Enid work hard all their lives, they pay their stamp and the thought of them being denied a drug which may improve their quality of life is just awful. It's absolutely wonderful that NICE have been told to look again at their policy.

"We never kidded ourselves that Aricept was some kind of wonder drug, but as soon as Enid started taking it her symptoms did level off. The treatment allowed us to go to Japan to visit friends I knew from the Army, and when we came back we had a big party to celebrate our Golden Wedding anniversary.

"I'm looking at the photograph now of Enid cutting the cake, they're the kind of memories that I'll always treasure."

In the last two years, Enid, who now goes to a day care centre, has gone rapidly down hill, but having had time to come to terms with the illness her family have had a chance to prepare for the bleak times ahead.

"In quiet moments I used to shed a tear, but I don't any more," says George. "I know that there is nothing that I can do to change the situation, so we just have to make the best of it.

"I worry that Enid is becoming institutionalised. The staff at the day care centre are fantastic, but when she comes back home
on an evening she often thinks she's still there.

"The one thing I've always said is that for as long as I possibly can I want to look after Enid at home. This is where she belongs and I fear that if she did go into a home her decline would be even quicker.

"People always used to remark how well Enid coped with the news, how much she smiled. Even if you saw a photograph of her now, you wouldn't notice anything was wrong. She taught us all a really valuable lesson and even though sometimes she doesn't know who I am and we can barely communicate, I know I have to be strong for her and our daughter."

While the Court of Appeal verdict does not guarantee a change of heart by NICE, it is now obliged to reopen the appraisal process. The hope of organisations like the Alzheimer's Society is that cases will be decided on individual merit by doctors who are better able to assess the best interests of their own patients.

The society has spearheaded a two-year long campaign against NICE's decision which it always claimed was in breach of disability discrimination laws and while the war may not yet be won, the ruling is a significant victory.

"Time and quality of life has been snatched away from thousands of vulnerable people who have learned they have this devastating disease," says Neil Hunt, chief executive of the Alzheimer's Society. "The decision must now be urgently revisited and we are delighted that fundamental flaws in the process used by NICE have finally been recognised.

"One in three people who live past the age of 65 will die with dementia. For the price of a cup of coffee a day these treatments can improve the lives and their lives of their families.

"NICE's remit must be changed to ensure the wider benefits
of treatments are always taken into account."

The most powerful calls for a rethink will always come from those who have watched their loved ones fall under the grip of dementia and for George the experience has taught him that life is more precious than he
ever realised.

"Enid is my wife and I'll do everything I can to make her life as comfortable for her as possible," he says. "We had 50 wonderful years together and whatever happens in the future, that's one thing Alzheimer's can't take away."



ALZHEIMER'S – A CONDITION ON THE RISE

Alzheimer's is a progressive, incurable brain disease and the most common form of dementia.

An estimated 700,000 people in the UK have dementia, of whom more than 400,000 suffer from Alzheimer's. This number is expected to rise to more than one million by 2025 and 1.7 million by 2051, figures from the Alzheimer's Society show.

Alzheimer's attacks nerves and brain cells as well as neurotransmitters which carry messages to and from the brain. As the disease progresses, clumps of protein known as "plaques" and "tangles" form, destroying more connections between the brain cells, according to information from the NHS.

People in the early stages of Alzheimer's can experience memory lapses and have difficulty finding the right words.

A combination of factors, including age, genetic inheritance, environment, diet and overall general health are thought to be responsible.

Drug treatments are available that can improve the symptoms or slow down the progression of Alzheimer's in some people.

Alzheimer's is currently diagnosed using methods including memory tests and brain scans.

Features of Alzheimer's include short and long-term memory problems, poor judgment, difficulty in performing everyday tasks, language problems, disorientation, mood swings and personality changes.

For each person with Alzheimer's, only £11 is spent each year in the UK
on research compared with £289 for each cancer patient, the Alzheimer's Society said.

Earlier this year, best-selling author Terry Pratchett, who has Alzheimer's, pledged £500,000 to help find a cure for the disease. He is one of at least 15,000 people in the UK under the age of 65 with early onset dementia.

Alzheimer's was first described in 1906 by the German neurologist Alois Alzheimer.



The full article contains 1397 words and appears in n/a newspaper.
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  • Last Updated: 12 May 2008 11:22 AM
  • Source: n/a
  • Location: Yorkshire
 
 

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