If something happens to me or to someone close to me, I thirst for information. When I was pregnant with my first child I borrowed library books which detailed every stage of the nine months. When my mother was diagnosed with glaucoma (which is hereditary) it was hot foot to a medical encyclopaedia. And as for when my father got Guillaume-Barré syndrome and was months, paralysed, in Intensive Care, you can imagine how well informed I became.
Inevitably then, I have read a great deal about Alzheimer’s in recent months. Knowledge is power (sort of) and at least I can look the loathed Ms A straight in the eye if I know the awful facts. And that makes me feel a bit stronger, if nothing else.
There is, I have now noticed, some sort of news story about Alzheimer’s in the newspapers almost daily. I have collected a fat file of cuttings. Alzheimer’s research, incidentally is scandalously underfunded.
An analysis in 2012 (reported in BMJ Open in April 2015) found that from a combination of government and charitable funding only £90m was spent on Alzheimer’s research in Britain that year. £544m went to cancer research in the same period – six times as much. And this is against a background of Alzheimer’s being described as “the defining disease of the baby boomer generation” or as our consultant put it cheerfully: “Alzheimer’s is set to be the leading course of death over the next twenty years.”
A University College London study confirmed all this in July by estimating that more than 1.2 million people will have dementia by 2037 – it’s around 850,000 at present. For years, (younger) people have been saying rather crossly that my generation is the most fortunate in history – we haven’t fought a war, we’ve bought houses whose value has escalated, we had free education and all the rest of it. Now, it seems that our luck has run out. With a vengeance.
Anyway, back to those cuttings. The point I was rambling round to is that given that Alzheimer’s research is so woefully and disproportionately underfunded there seem to be an awful lot of reports about – some interesting, some ruefully hilarious and some just statements of the bleeding obvious.
I laughed a lot, for instance, on 20 July at the Telegraph strapline “A-levels and healthy hearing cut risk of Alzheimer’s”. “There!” I said to My Loved One over our breakfast muesli and fruit. “I always said you should have worked harder for your A-levels!” Then I read the piece. It referred to a (different) University College London study which found, among other things, that people who stayed in education beyond age 15 have an 8% less chance of developing Alzheimer’s. Grades and certificates are nothing to do with it. Well he remained in full-time education until he was 21 so that’s another one to cross off.
Last week a study at McGill University Canada noted that Alzheimer’s can start 20 years before the patient, or anyone else, is aware of it. And one of the earliest signs can be anosmia or loss of sense of smell.
It is at least two decades since MLO and I were driving along a country lane in Kent on summer’s day with the windows down. Then we passed a beautiful blue field of flax and I said “Oh what a wonderful smell!.” “What smell?” he asked, puzzled. I was utterly incredulous because it was an aroma of bowl-you-over strength. Then we realised that his sense of smell had pretty much gone and ever since then we’ve had to be careful about pans on the stove, toast stuck in the toaster and so on because he cannot smell burning – or anything else. I have to do the smelling for both of us, we’ve joked. Would it have helped if we’d known this was actually the top of a very nasty, slippery downward path? Probably not.
Then, only this week The Times (on its front page) announced that gum disease increases the risk of Alzheimer’s by 70%. What this boils down to is that researchers from Chung Shan Medical University in Taichung, China have established a link between poor dental hygiene and the dreaded Ms A.
Pause for a gulp of disbelief. MLO has been a mildly obsessive teeth cleaner – a three-times-a-day-with-the-brush-man – all his life. And of course he has seen a dentist regularly and, in latter years at least, rarely needed any treatment. So that’s yet another tick for the N/A box.
Over and over again, research finds that factors such as a Mediterranean diet, not being overweight, refraining from tobacco, maintaining healthy blood pressure help to prevent Alzheimer’s. Well maybe they do but it really isn’t what we want to hear at the moment.
Now, MLO is a slight man who has always weighed less than 10 stone and never been anywhere near overweight. He accepted a Woodbine in the Scouts when he was 12, hated it and has never smoked since. His blood pressure has always been fine. We both became vegetarians in the late 1970s, initially for health but also for ethical reasons. MLO has, therefore, been eating large quantities of vegetables, fruit, legumes and nuts every day for 40 years. He’s always been a willing walker too. And he has a beer with his dinner three or four times per week and no other alcohol. What more could be possibly have done in pursuit of what these researchers piously call “a healthy lifestyle”? More hollow laughter.
Then there are books. It was MLO himself who read a feature about Jospeh Jebelli’s book The Pursuit of Memory: the Fight Against Alzheimer’s and asked me to buy it. Jebelli is a neurobiolgist who graduated from UCL and now specialises in Alzheimer’s research at University of Washington, Seattle. His interest in the disease was triggered by watching his grandfather succumb to it.
Well, I haven’t yet been able to get my hands on this book because MLO has been struggling though it for three months. Alleyns School in the misguided 1960s taught him no science and he says he finds some of Jebelli’s explanations hard to understand. It is meant to be a mainstream book, however, so I shall reserve judgement until I’ve read it myself.
What I have read, though, is Memory’s Last Breath: Field Notes on My Dementia by Gerda Saunders. Someone on Twitter drew my attention to this and introduced Gerda to these blogs of mine. Gerda is a South African born academic and who has lived for many years in Salt Lake City where she worked until her retirement as an academic at the University of Utah.
She was diagnosed with Alzheimer’s in 2010 just before her 61st birthday. Gerda’s book is a delightful blend of her own thoughts and experiences – often very down to earth and personal – and fascinating, intelligent reflections on the nature of memories and how we shape them. Since MLO and I have known each other since I was 14 I’m now pretty sure that many of the things we fondly remember are simply memories of memories which we’ve created together. It’s an entertaining, informative, thoughtful and brave book which helped me, a little, to understand how it really feels to have a cloudy brain as opposed to observing someone else with one.
The single truth to deduce from this plethora of reading matter? There is no justice or mercy in nature.