"Dementia needs the same type of concentrated research as was put into tackling HIV in the 1980s, Sir Terry Pratchett claimed yesterday. The author said despite the large number of sufferers, the world 'does not take much notice' because it was a series of 'small tragedies' played out behind closed doors.
Dr Donald Mowat, a researcher at Aberdeen University and co-ordinator for Alzheimer’s Research UK’s east central Scotland research network, said, “Dementia is not a normal part of ageing – it is caused by brain diseases we can tackle, but we need more investment in the research that will give us answers.”
Four years ago, my father died following a long and cruel battle with Parkinson's and Alzheimer's diseases. Watching the steady disintegration brought about by these and similar diseases, which tend to get bunched together under the umbrella term 'dementia', is an experience I wouldn't wish on anyone.
Dementia is a harsh word. It conjures medieval images of gibbering idiots tearing at their own hair, ranting nonsense to imaginary companions; of scary loonies in straight-jackets. The reality is much more subtle. Dementia creeps into a person's life unannounced, like the stealthiest of thieves. It's a greedy thief, too, which doesn't just settle for sprinting off with the silver but which keeps on stealing more and more until little or nothing of the victim's identity remains.
The onset is often unnoticed. Who isn't a bit forgetful sometimes? How many times have you striven to recall an actor's name, knowing the answer is inside your brain somewhere if only you could retrieve it? How many times have you walked into a room at home, knowing you were going to do something but it's suddenly slipped your mind? We all do this from time to time. This is how dementia often begins; a little forgetfulness which slowly, slowly snowballs until another family member becomes aware that all is not as it should be.
On the outside, the dementia sufferer looks no different. Perhaps a new clumsiness develops. The attention span shortens. Routine tasks like putting the kettle on become confusing. And the person experiencing this knows something's wrong; they know that they know how to do these same simple tasks which they've been doing all their life - and so feelings of frustration, anger and fear are not uncommon.
The development of dementia doesn't run to a set timetable. With some people it happens more slowly than others, and currently there are drugs available which can help to slow the disease's progress in some people - but not all people.
A lot can be done to help someone with dementia - speach therapy, physiotherapy, art therapy, for eg. Activities for dementia sufferers need to be short in duration (around 30mins max., I've found) and ideally in some way relate to that person's previous interests.
It's not only the person who actually has the dementia who suffers. So does their family. They find themselves trying to care for someone who is increasingly dependent, eventually to the point where the patient can no longer be safely left in the home alone.
In Britain we have an aging population, with an increasing incidence of dementia. As yet there is no cure. But it's a disease, and like all diseases dementia will have its causes and its cures - if only we can discover them. Given enough time and resources, we will. Meanwhile, how many more people will fall prey to this bitterly cruel thief of personalities?