Dr Thomas Stuttaford
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Although the jazz singer George Melly suffered from vascular dementia and lung cancer during his final months, neither stopped him from continuing to appear in public. Shortly before he died in July he cooperated in making a film for BBC Four that is to be shown on Wednesday November 7. Melly was looked after at home by Diana, his wife, with the help of the Admiral Nurses, who work with the charity For Dementia.
Diana wrote about her 44 years with Melly in her biography Take a Girl Like Me. The book chronicles their unusually open marriage – even for a bohemian couple – from their first meeting, which led to their union being consummated later the same evening on Hampstead Heath, to their joint campaign to support the Admiral Nurses and For Dementia. An exhibition of Melly’s artwork is to be on show at the East West Gallery in Notting Hill from Friday until November 10.
In Britain at least 600,000 people have dementia, and the number is increasing as more people live longer. Alzheimer’s is the most common cause and accounts for more than 60 per cent of the cases diagnosed. Vascular dementia is a condition that results from a series of small, very often undetected, strokes, each of which damages the brain tissue slightly so that there is progressive loss of intellect. A similar number of patients suffer from mixed dementia. With this condition there is evidence of brain damage from small strokes and from Alzheimer’s. There are other forms of dementia including Parkinson’s disease and Lewy Body dementia, which has features of both Parkinson’s and Alzheimer’s.
The speed of progress of Alzheimer’s disease is variable. Its first signs show at a later age in highly educated people. Once established, the downhill path of the formerly bright, high achiever seems to be faster. Whatever the speed of the decline, the symptoms can be divided into early (mild), middle (moderately severe) and late-stage (severe) symptoms. This classification is important. NICE-approved drugs that, in some cases, slow the progress of dementia but don’t cure it, will be paid for by the NHS only for patients with middle-stage, moderately severe symptoms. Even more surprisingly, if the patient’s condition improves so much that he or she is reclassified as having only mild symptoms, the drug is discontinued. If a patient’s condition degenerates into severe, end-stage symptoms, treatment is also discontinued even if it seems to be helping.
Few of NICE’s decisions have caused such widespread discontent and seemed so lacking in human understanding. Previously it had always been considered that the most important time to treat dementia was early. If early treatment is prescribed, an appreciable number of patients are able to continue as happy and helpful members of their family and of society.
Although mild, early-stage symptoms don’t sound troubling, patients can suffer depression, loss of concentration, an inability to make decisions and an avoidance of responsibility as well as being forgetful, confused, moody, irritable and upset by the frustrations engendered by intellectual incompetence. Early middle-stage symptoms include being unable to remember time, day and place, recognise familiar surroundings or follow a conversation. Melly kept going and even took part in a performance at the 100 Club in aid of the charity For Dementia and their nurses only weeks before he died.
There are three drugs, Exelon rivastigmine, Aricept donepezil and Reminyl galantamine, that may be useful in mild to moderately severe dementia. There is also evidence that a fourth drug, Ebixa memantine, is helpful in some cases of late-stage Alzheimer’s. The good news is that even though the NHS won’t pay for treatment except for those who are euphemistically referred to as being moderately severely demented, Exelon is now available as a skin patch. As the Exelon is absorbed more smoothly through the skin there is less likelihood that a patient will suffer any mild side-effect.
For Dementia, tel 0845 2573310 or visit www.fordementia.org.uk
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In response to J Smith's comments:
For those of us who have read the full evidence within the NICE Guidelines it is important to consider the following:
The improvements provided by medication in terms of Quality of Life for the person with dementia were not considered important by NICE in making a judgement. Neither was the impact on family carers, which in the case of dementia is known to be significant in terms of impact on both physical and psychological health
So, if it is about saving money then at least let's be less short sighted! Offering these drugs could and does have longer term health benefits for the whole population.
The fact that our government does not address the profiteering that the pharmaceutical companies are allowed to get away with within the NHS is a separate issue. This equally needs addressing but don't use the most vulnerable in our society i.e. those with dementia, to do it.
R Thompson, London
Rachel Thompson, London ,
Given that the drugs are proven to slow down the progression of dementia for a great number of patients, it is essential to begin medication as soon as possible. NICEâs decision to withhold drugs at an early stage is not only a disgrace, but a false economy. In addition to ignoring the wellbeing of people with dementia, NICE also fails to take into account the stress and strain on carers. Furthermore it is known that taking medication can often delay the need for full-time residential care. I am not aware of any other illness where the person is expected to wait until they are really very unwell before they are âallowedâ to start medication. Of course, NICE is less interested in the pursuit of âClinical Excellenceâ than the need to save Gordon a few bob â in this case a paltry £2.50 a day. They should all hang their heads in shame.
Mycal Miller, London,
My mother has semantic dementia, which she began developing in her forties, so a topic close to home. As a former medical librarian, I have to say that it is very frustrating to see a wide gamut of medical reporting that does not tell you sufficient information to be able to make a valid opinion. As shown by the horrendous debacle with MMR, the findings of a single study should not be reported without context. (are the finding statistically significant, is there metanalysis on the topic, has the study only been done on mice). The best resouce around is the NHS funded Hitting the Headlines, which no one seems to know about but provides a great services of reviewing studies and how they are reported in the press. Latest alzheimer article is http://www.library.nhs.uk/rss/newsAndRssArticle.aspx?uri=http%3a%2f%2fwww.library.nhs.uk%2fresources%2f%3fid%3d270494 but they have a searchable archive as well.
Sue, Bristol,
I have never understood why patients with dementia are treated like scum by this government. With no other illness would you deny life enhancing drugs, offer little or no support to their families and then force them to sell their homes to fund what pathetic treatment they receive. When was the last time an HIV patient was treated thus? Or a cancer sufferer? Dementia is an appalling and terrifying illness, for the sufferer and for their family. As more of us understand and see what dementia actually means, I predict the number of people opting out by means of euthanasia will rise. At the first sign of symptons, I wil certainly be one of them.
Wendy L, Bergerac,
*+*+*+I am very lucky indeed in that my 87 year-old mother still completes two crp[tic crosswords a day and attends WEA classes; however she is profoundly depresssed by the mental decline of two of her contemporaries, who were only recently quite as mentally competent as she is now.
Dectora, London, UK
My father has Lewy-body disease and his quality of life - mobility, cognition, and memory were eroding rapidly with dreadful disturbed sleep, falls, wandering, hallucinations, and confused speech. He started Aricept 3 months ago and there has been an almost complete resolution of all of these last 5 types of problems and his quality of life is dramatically improved.
Sadly it is not funded for this indication here in NZ either but it is clearly worth the expense to combat this underdiagosed condition which causes up to 1/3 of all dementia . If he had cancer instead with a progressively dwindling quality of life, no doubt treatment would be free but patients with dementia can't advocate for themselves. It is a silent epidemic.
Gill H, Auckland, NZ
My mother has dementia and only 3 years ago was a healthy vibrant woman. Now, at the age of 55, she is bed-ridden and doesnt know who her husband, 5 children and numerous grandchildren are.
Her care has been disgusting and to think that, with the right medication and care, her health could have been stabilised for years to come.
Ive lost my Mum, yet she is still here. Its heartbreaking every single day, yet still these decisions are made that destroy lives and families.
D-M Lloyd, Wirral,
The Alzheimer's Society estimates that there are currently over 700,000 people in the UK with dementia.
B Ward, Guildford,
A nice piece of promotion for the pharmaceutical industry towards the end of the article there - who says we have no direct to patient advertising in the UK?
Anybody who has actually seen the full evidence knows that the effect of all these drugs is minimal at best. Wishing that the drugs work unfortunately won't make that so and we should spend the taxpayers/NHS money on interventions that can help people with dementia.
J Smith , London,