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Soon, this might be any of us

23 September 2009

It is time more money was spent on research into dementia, says Paul Donovan



Dementia is a growing problem in the UK, with 700,000 sufferers. This figure is predicted to rise to 800,000 by 2018, and to 1.7 million by 2050. The most prominent form of de­mentia is Alzheimer’s, with 417,000 sufferers in the UK.

Alzheimer’s disease, which was first described by the German neurologist Alois Alzheimer, is a physical disease that affects the brain. During the course of the disease, “plaques” and “tangles” de­velop in the structure of the brain, leading to the death of brain cells. People with Alzheimer’s also have a shortage of some chemicals in the brain: these chemicals are involved with the transmission of messages within the brain.

Alzheimer’s is a progressive disease, which means that gradually more parts of the brain become damaged. As this happens, the symp­toms become more severe. There is no cure at present.

Other forms of dementia include vascular disease, which occurs when oxygen supplies to the brain are restricted; and dementia with Lewy bodies (DLB), which gets its name from spherical structures that develop inside nerve cells, leading to the degeneration of brain tissue at the front of the brain.

By 2018, dementia will cost the UK £27 billion per annum. Yet dementia research is desperately underfunded. It is one of the main causes of disability later in life — higher up the league than cancer, cardiovascular disease, and stroke. As a country, we spend far less on dementia than on these other conditions. In 2007-08, cancer research received £248.2 million, while dementia research received just £32.34 million.

MY FATHER suffered from Alzheimer’s for the last few years of his life. It was painful for the whole family to see the gradual deteri­oration of a man who had always been full of zest for life.

In the early stages, it could all be taken as a joke. One Christmas, we set off from London, heading for the south coast — a journey he had done hundreds of times before — only to finish up in Maidstone. It was clear that something was wrong. After a time, the positive motivations in my father to achieve things became negatives, and the result was an aggression that was difficult for my mother to cope with.

The question why certain people get Alzheimer’s can become an all-encompassing one for the family of sufferers. In my own and my brothers’ case, the worry is that it may be hereditary. Dad’s mother had Alzheimer’s before him, and his sister developed early Alzheimer’s just before she died three weeks after him last year.

It was one of the dark-humour moments after the two funerals, as I discussed with my brother and two cousins how worth while it would be for us to invest in the latest treatment for Alzheimer’s, the drug Rember.

It is a regularly occurring thought, though: will I get Alzheimer’s? Forgetting things takes on a more sinister meaning for those with Alzheimer’s in the family. When that forgetfulness can be likened to something that a relative with Alzheimer’s used to do, then it takes on an even greater resonance — in my case, for example, forgetting whether I have locked the house and turned all the appliances off. This was a regular lapse in the early days with Dad.

This is probably reading too much into what, on the whole, are purely signs of ageing and general tiredness.

PEOPLE in the early stages of Alzheimer’s may experience lapses of memory, and have problems finding the right words. As the disease pro­gresses, they may become confused, and forget the names of people, places, appointments, and recent events.

They may experience mood-swings; they may feel sad or angry; they may feel scared and frustrated by their increasing memory loss and become more withdrawn, owing either to a loss of confidence or to communication problems. These are all signs that need to be acted upon as soon as possible.

On the positive side, in our family, my mother has a photographic memory that shows no sign of deterioration in her mid-eighties.

The hope must be that the latest breakthrough will lead to further developments in treatment. It must also be hoped that care options will advance beyond the present ap­proach of sending people to care homes and the NHS to die gradually.

The key to such developments is funding. This disease has moved up in the public consciousness, owing to media coverage and the growing number of people affected by the condition. Nevertheless, the pressure needs to be kept up. Only when dementia is given the same sort of priority in medical terms as, say, cancer can the condition really be said to be getting the attention it deserves.

If that happens, and the condition gains a similar level of priority, then it is possible that the solution to much suffering will be found.

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