Fifty Years of Terry Pratchett

Terry Pratchett : Speech to the Tory Party Conference September 29th 2008

I’m here today because you asked me to come.  I’m not here as a Tory, a Liberal or a Socialist.  My politics have always been “Against the Government”.  Sorry, I became a journalist at an early stage, and some of it sticks.

You invited me here not because I’ve written 43 best selling books in the past 25 years, but because I’m the man who stood up  and  said I have Alzheimer’s.  I’d prefer to be the other guy, I assure you, but he seems to have disappeared. In fact  I have a rare variant of classic AD, known as Posterior Cortical Atrophy which pummels the brain in a slightly different way and as a result leaves me, possibly to the detriment of the long-term future of the disease, in a position to keep on talking.

We are facing, to use the term said to me by one of the leading US researchers in the last month, a  world wide tsunami of Alzheimer’s and other dementia diseases.  I am just a little ahead of the wind, you see.  Technically I am early onset, but growing older behind me are the Baby Boomers, made strong and fit as the first generation to grow up in the (in those days, anyway) beneficent arms of the National Health Service.  All those injections,cod liver oil, orange juice and at least for a while, school milk, made us big and strong.  It was cradle to grave care, although I note that some now might prefer that it  becomes cradle to “not useful enough to live.”

Well, the grave holds no particular fears for me, but like everybody else, I’m concerned about how exactly how I get there.

Woody Alan famously said  “I don’t mind dying, I just don’t want to be there when it happens.”  I would like to be there at least until the morphine is called for.  I’d like to know the faces around me, and my own name.  I assume you feel the same.  By the year  2025 there will be over one million sufferers here as the cohorts of the first post war generation will take their chances in the dementia lottery.  One in 14 will lose. So, in a way, will their spouse, if they are lucky enough to have one (the state will be lucky in that case too; they will be one of the unsung army who, taken for granted and formally unsupported, nevertheless save the  state £6 billion a year. They may be a diminishing resource, given the less traditional family structure in recent decades.)  Even with their unsung and un rewarded help the cost to the economy, if we still have one, will be be around £35 billion in twenty years.

Ye gods, I hate the statistics. I’d rather keep it human.  So I will say that they add up to this: The toll of this nasty disease is greater than you think, the risk greater, the costs higher, and appreciable number of you will sooner, alas, be following me.  Trust me on this. People joke about it, an the laughter is undercut with fear, and rightly so.

This is not  disease of the bumbling, troublesome elderly. People get it in their fifties an sixties.  I was diagnosed at 59 and sixty is supposed to be the new forty, so you can assume a certain tetchiness on my part.

Certainly you are more at risk with age, but it is no more a natural part of aging than is cancer, yet the latter, in comparison, flush with support and research   AD appears to be seen as a social problem rather than a medical one, which is why carers are so starved of help. A cancer patent is a battler; a dementia patient a superfluous  old fart.

It  can strike anyone, and does. Lifestyle choices may or my not help; I suspect at best they change the odds a little. And there is no cure.

Researchers are optimistic about something that, while not a cure, might allow us to enjoy a more ‘normal’ life.   If they were not optimistic, they would not be researchers. I hope it will be soon and then, of course, we will have to see if we can actually afford it.

It might be worth saving now. At the moment the NHS canot afford for every sufferer to be given a palliative treatment costing £2.50 a day and the numbers are growing

This is not a scenario designed to scare, although it scares the hell out of me and this is what is going to happen. These are the cold equations.  If the disease is not stopped or slowed then the country will have to deal with very a large population of helpless elderly, and politicians will have to deal with their carers who, having grown up in the same generation, do not have the same forbearance and stoicism of their forebears.  Someone, and it may be people here, will have to make some big decisions.

Is there going to be a government of any stripe in England willing to put its money where it’s mouth is and fund changes?  Or will dementia remain the most feared disease of the over 55s? They fear the under-funded ‘home’, the loss of dignity and the chemical cosh.

Let me tell you a little about the disease.  I know one fellow sufferer who has told her doctor that if she contracts cancer then she wants the pain killed, but not the cancer, preferring that to the end game of the Alzheimer’s sufferer.  From where I sit, hardly affected as yet, it seemes as though someone has pushed the fast-forward button   Life is like a very slow motion car crash,  almost balletic, as small things break and buckle and drop away.  And as little losses mount up, what is always at the back of what is left of your mind, is that sooner or later you will go through the windscreen.  After I told people of my diagnosis an old friend rang to offer sympathy. He has cancer of the bladder, and he felt sorry for me.

I can recall when no-one talked about cancer. Now its treatment, prevention and cure are commonplace subjects in the media.  Dementia, on the other hand, is stuck in a medieval fog of superstition, misunderstanding and silence, corrosive and shameful and betraying

Ronald Regan broke that silence, and this led to increased government funding for dementia research in the US.  It is well known that Lady Thatcher was very moved by her friend’s condition,  and told the Daily Telegraph in 2000  that it was a important to raise awareness of these diseases.

And that’s why I’m here. Awareness slips if someone doesn’t lift it and I want this disease to be dragged into the light  and stay there, seen for what it is, a random disease and no cause for shame . To kill the demon you must say its name. The second step is an efficient  sword; the disease has a physical cause; it must fall to a physical solution.

I was amazed, when I began this journey, at how many people I met who had encountered  AD in their immediate circle.  One in three of the people who reach what we think of as old age will and do die with dementia, but it is claimed by some other cause of death perhaps even before the family suspects. Yet we seem to tolerate the disease because it’s come to be seen as “something that happens to old people” and can’t be helped.  Once upon a time it was normal for a child to reach puberty having experienced  the death of one or more sibling.  That was what happened to children.  We decided that it should not be normal.  We can make that decision here, too.

There’s only two ways it can go; researchers, with as much help you can give them, may come up with something that reduces the effects of this dreadful, inhuman disease, or we will have to face the consequences of our failure to prevent the final years of many of us being a long bad dream.  The strain on carers and their support is bad enough now; before very long the effects on the health service and society itself, will be unbearable.

What is unthinkable is to do nothing at all.