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Respect, research and realism

We’ve been discharged by our consultant. No, that isn’t the royal we. The three of us – My Loved One, Ms Alzheimer’s and me – are in this together for the long haul.  The three of us have seen Dr Latha Velayudhan three times. She’s satisfied that MLO is tolerating, maybe even benefiting from, his medication and that all is as well as it’s likely to be.

So, from here on we are to be “managed” by our GP. That means we fill in a form when the pills run out and collect the prescription the next day – signed by someone at our practice whom we’ve never met. We are assured though, that we can make an appointment with Doctor Latha if at any point in the future we feel we need to see her.

I am very impressed indeed by Dr Latha who has done a great deal of Alzheimer’s research, has written “papers” and devised an app https://appadvice.com/game/app/oxleas-dementia-oxl/1266711995 to help people like us. The coyly named Lewisham Memory Service (I suppose they really couldn’t call it The Dementia Department) is one of several places she works. She is pleasant, friendly, practical  and above all, recognises that we are intelligent, reasonably well educated people who definitely don’t need to be patronised or spoken to entirely in monosyllables. It’s the little things which highlight this. She runs her own diary so that if another appointment is to be made we all look at our diaries and fix one, completely bypassing all the usual NHS bureaucratic nonsense. She routinely shows us to the main door of the building herself too, as if we are respected visitors.

At the last meeting – and it feels more like a meeting than a medical consultation partly because we three sit in a computer-free meeting room at a circular table – Dr Latha asked MLO if he would agree to help with research if needed for any studies. He agreed, although it might mean extra scans and monitoring. And I might have to be involved in this, if it happens, as carer/observer. Well that’s fine. The research sorely needs to be done. If they don’t find a way of holding back the Alzheimer’s tide within the next generation  the economies of most Western nations will implode.

I asked Dr Latha – who clearly knows her stuff – to run the dementia statistics past me.  We were speaking in the week of the cheerful announcement that Alzheimer’s has overtaken all other diseases as the UK’s leading cause of death.  In money terms, though, is it really as bad as the press constantly tells us?

“It costs £23 billion to take care of these people” said Dr Latha soberly. I queried that to make sure I hadn’t misheard a nought or two. “Yes, £23 billion” she confirmed “and that’s more than cancer, diabetes and cardio-vascular disease all added together”.

But – and here’s the real scandal – when it comes to funding, Alzheimer’s research gets only around a third of what’s in the pot. The other 60 per cent or so goes to cancer, diabetes and cardio-vascular disease.

Well of course we need research into all the diseases which kill people but I think there’s strong argument for sharing out resources in approximate proportion to the size of the problem. Or, is there a perception that Alzheimer’s patients are (usually) old anyway so they matter less?  Chilling thought but I suspect I’ve hit the nail on the head.

Dr Latha then asked me if I would be willing – on an occasional basis – to take part in funding consultations when money for research is being allocated. They need carers and patients, apparently, to tell them what sort of research might be useful and what wouldn’t. Of course, I said yes.

I honestly don’t think that anything which emerges from any sort of research is going to help MLO directly. It is almost certainly too late for us.  Ms Alzheimer’s already has her claws firmly embedded. We might weaken her hold very slightly with pills for a while but there isn’t going to be any kind of new discovery which will enable us to shake her off.

But we have to think of future generations. Anything we can do now which might save others from finding themselves where we’re heading now is worth doing. And anyway doing something positive and constructive does actually make you feel better. Moping doesn’t help.

 

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Susan Elkin
Susan Elkin Susan Elkin is an education journalist, author and former secondary teacher of English. She was Education and Training Editor at The Stage from 2005 - 2016
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