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Early diagnosis? No thanks

Why is so much Alzheimer’s research focused on the concept of diagnosing the condition earlier? It isn’t as though there is any treatment which can then be applied to prevent the full-blown disease from developing.

An early diagnosis of, say, breast cancer after a routine mammogram is a completely different kettle of fish. Treatment at that stage often saves lives which is marvellous. Until there is comparable treatment for Alzheimer’s I struggle to see the advantage (for the patient and his/her family, anyway) of knowing a lot sooner that this inexorable disease is going to kill you slowly and horribly.

My Loved One lost his sense of smell 25 years ago. I now know that is quite a common pre-Alzheimer’s symptom. At the time we naively thought it was odd but quite funny and put in smoke alarms. What good would it have done us if, back then, someone in medical authority had done tests and advised us that he would go on to develop full blown Alzheimer’s? These days If I hear of anyone else mentioning anosmia (the posh name for being olfactorily challenged) then I keep very quiet. How can our experience possibly help?

Diagnosis is a very mixed blessing. You walk into the consulting room feeling like a normal human being with a future, a cat and life to lead and you come out weighed down by a massive invisible label. You have crossed that huge chasm which divides the well from the terminally ill. The Grim Reaper is waving his sickle at you and you can see him clearly. You are now a patient and your life is, at a stroke, medicalised.

And I’ve never forgotten, at an assessment meeting a few weeks before Diagnosis Day, the nurse turning to me and saying: “Now I have to ask you a few questions as his carer”. For a minute I couldn’t think what she meant because I had never thought of myself in carer terms at all. I was, and am, just his wife. It seemed almost laughable at the time. But I too was about to be dragged, very much against my will, across that chasm to become a medical statistic – complete with hideous, unwanted new job title.

I sympathise a lot, then, with people who are clearly in the early stages of Alzheimer’s or other form of dementia but who have – thus far – refused to discuss it with anyone official. They know that they can, more or less, carry on normal life for the moment and that as soon as they hand their problems over to the medics and support workers everything will change and their lives will no longer be their own. Well meaning “help” will arrive in the form of occupational therapists, advisory nurses, care assistants and the like. Who can blame them for delaying such intrusion for as long as possible? I certainly don’t.

None of this is, in any way, a criticism of the system. Almost every NHS employee we’ve seen in the last two years has been – in no particular order –  helpful, kind, practical, friendly, supportive and willing to give us as much time as we’ve needed.

Take the GP we saw last week for a “routine review”. We seem to see a different man or woman almost every time we attend the surgery because it’s a big practice. In this instance, though, it was Dr K who happened to be the first GP we saw not long after we moved when we finally decided to “report” My Loved One’s multiple problems. He remembered us and was really delightful – leading the confused, wobbly MLO gently into his consulting room by the hand, carefully noting all our concerns and promising to come back to me soon with some answers. He also had an animated chat with me along the way about the Globe’s Romeo and Juliet which he was due to see with his wife and daughter that evening and which I am reviewing this week.

But I digress. My point is that diagnosis recast us in new roles. MLO became an invalid and I his carer. And it was instant. On 28 April 2016 we were an ordinary couple planning and looking forward to things. By the afternoon of 29th our whole world had shifted. I remember the consultant saying bravely at that appointment: “Nothing changes”. Well I suppose she meant well but it’s a lie because everything changes diametrically the moment you know you have this illness for which there is no cure or even any effective treatment. Suddenly your future has gone and you face only terminal decline. But, of course no one is going to tell you that in so many words. They have to be as positive as they can.

So personally I am very glad we didn’t get a diagnosis any earlier. It would simply have curtailed our normal life together sooner and for longer. And until they manage to develop some effective, interventionist treatment I shall continue to be sceptical about “earlier diagnosis” as a research aim. Yes, I know that if they can get people on board long before real illness sets in, maybe they can monitor and observe the decline more closely which might help research.  Consider, though, the frame of mind of the individual whose future is being made even worse by having to live with the certainty that Alzheimer’s will eventually fell them. Sometimes ignorance – innocence anyway – is better. I’m really grateful that we didn’t know until relatively recently.

I’ve started a fundraiser for Alzheimer’s Society to mark our Golden Wedding at the end of March 2019. If anyone wants to contribute here’s the link:

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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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