Drug companies must have had a nasty shock when they heard that the National Institute for Clinical Excellence (Nice) recommends discontinuing drugs for mild to moderate cases of Alzheimer's disease. The initial fightback took the line, 'Old people are low priority and the drugs are too expensive for the NHS'. That didn't work (there aren't many votes cast by people with the disease), but suggesting the government was letting down relatives (who do vote), ruining their quality of life, seems to have. Unfortunately, it is true that the best interests of relatives and patients are not served by these drugs.
Nice proved that the drugs only work for half of users. There are also considerable side-effects, but there is no method for predicting who will experience them. This means many patients suffer for no benefit. Increasing doses are also necessary - with escalating side-effects - because, as Nice also reveals, the drugs only work for a short time. A clear indication of their ineffectiveness is that drug-takers (compared to placebo-takers) showed no reduction in the rate of progression of symptoms or of requiring institutional care.
But most important of all, Nice found that what benefits there are, are purely cognitive. Well-being and quality of life of the patient are not improved. For those managing the illness, like Penny Garner, director of the Specal unit in Burford, Oxfordshire, this is the real crunch. Garner has pioneered a method which enables carers to sustain lifelong well-being in patients, with no use of drugs. 'If you think of memories as photographs, in a healthy individual the album is full,' she says. 'As we get older, all of us get slower at finding the recent photos, but in Alzheimer's many new experiences fail to get stored in the album at all. The recent pages become increasingly blank; the earlier ones remain intact. Our work accesses the old photos, making a present of the patient's past.'
Working closely with the families and the patient before they are too ill, she ferrets out emotional places from their long-term memory which the patient will be able to recall as the illness progresses. She then helps their carers to help them to live in that place, a sort of happy Groundhog Day. Validated by a 1999 Royal College of Nursing study (see www.specal.co.uk), Specal has enabled hundreds of Alzheimer's sufferers to have wellbeing, and it is providing training in the method to professionals from all over the UK, without government support.
Says Garner: 'At best, the current drugs encourage a focus on short-term memories and distract from exploring the older ones - a far safer, more fertile area for well-being. Money should be redirected to training practitioners who help families to help patients live in happy emotional places.'
Never mind the money that would be saved by making this kind of care available, which would you rather have if you or your parents had Alzheimer's: a brief boost to short-term memory or lifelong well-being? It's a no-brainer.
