Sir Terry Pratchett – Dementia Blog, what’s the point of it all?
The internet is a dumping ground and finding words of any worth in the flotsam and jetsam can be a chore.
In spite of this, Alzheimer’s Research UK – a charity of which I’ve been patron since 2008 – believes more words in the form of a new dementia blog might tempt people away from cat videos long enough to read something of substance. Are they right?
If there is indeed an emerging sense – finally – that we’ve stopped pussy footing around dementia and can now bear to utter its name, we nevertheless find a cloud of unknowing persists. People read, watch and hear more about it than ever before. They know it’s out there. They know it will claim more of us as we continue to age. They fear it. Dementia vies with cancer in an unsavoury battle of the scariest, but it must be said that some lucky people will survive cancer. But I suspect many still don’t understand dementia or, at least, understand it only as an insidious memory loss. The fear, perhaps, is a fear of the unknown.
There isn’t one kind of dementia. There aren’t a dozen kinds. There are hundreds of thousands. Each person who lives with one of these diseases will be affected in uniquely destructive ways. I, for one, am the only person suffering from Terry Pratchett’s posterior cortical atrophy which, for some unknown reason, still leaves me able to write – with the help of my computer and friend – bestselling novels. There’s no clearly plotted pathway to the course of these diseases. Dementia attacks those facets which make us who we are, and it’s a deeply personal attack that defies prediction. And that’s the point. Every person with dementia has a unique story to tell, and this blog should tell as many as it can. Words need to be put down before they run dry… or run out.
If dementia is countless sad stories played out behind closed doors, then this corner of the internet is the peek behind the curtains. Sharing these stories will be an education for many readers and a catharsis to those who contribute to it, but, in the end, it won’t make people with dementia feel any better; only a new drug can do that. So I also expect this resource to become a clear commentary on progress towards a cure.
Technology and a trained and compassionate care system can help paper over the cracks, but, a decade since the last proclaimed development, science needs to deliver on its promises. There’s more money floating around the government for research, but barely enough to buy a middling premier league striker. This is the country’s leading dementia research charity, and it’s growing during tough times, but Cancer Research UK is 54 times larger. If we’re serious about this thing, and want to match the fanfare with the funding, then more money needs to be found down the back of David Cameron’s sofa.
The funding drum will continue to be beaten no doubt. In the meantime, donors to this charity and all of us as tax payers put faith in the scientists working their arcane magic with limited means. We need to know that they are beating the odds, and this should be the place to come to find out. Believe me; I, for one, will be looking over their shoulders and taking them to task. Come on, get on with it!