Alzheimer's - the question that must be answered

Posted by Alexander Hay

Our society has to both redouble its efforts in fighting this terrible disease, and change its attitudes towards it too.

Our attitude to Alzheimer's - and the mind - is barely more advanced than when this picture was first printed

As conditions go, Alzheimer's Disease is as nasty as they come. Attacking, as it does, the mind itself, the implications are a loss of memory, thought and identity – everything, in other words, that makes us, 'Us'

It is certainly feared, and for good reason, but such discussions are purely academic for those who are afflicted and those relatives, friends and spouses who find themselves caring for the sufferer and often trying to find some way through the splintering of life that results.

Yet it seems oddly invisible. Certainly, it gets reported in the media, usually when a famous sufferer expires or a non-famous Alzheimer's victim dies in an unusual way. Herein lies the problem, as there are equally nasty and relentless conditions out there, such as HIV/AIDS and the myriad forms of cancer. Yet these seem much more visible, respectable even.

Whereas, Alzheimer's seems less a public matter and more a private tragedy, something that takes place behind doors and away from the public. In part this is due to the nature of the disease, which robs the sufferer of their faculties, while someone in the advanced stages of AIDS, for example, can still remain lucid and compos mentis

This means that Alzheimer's sufferers often need others to speak for them, and are often rendered passive by their condition, all of which often gets in the way of a tidy media narrative, through which the condition could be better publicised.

As such, our perverse media and its equally perverse 'news values' simply don't see Alzheimer's as 'sexy' (read: exciting) enough. Nor does the public, afraid and bigoted as it is towards mental health issues, wish to think much about a condition that can turn them into something they both fear and abhor. Cancer can be cured, and AIDS managed with the right drugs, but Alzheimer's remains a great leveller, and we live in an age where mortality is the great taboo.

Yet even when there is media visibility, there remains a certain ambivalence. Perhaps the most high profile sufferer in the UK today is the fantasy author and humourist Terry Pratchett. On the one hand, he has been a positive influence on the debate, remaining active despite the onset of early symptoms, and bringing the disease out into the open.

But on the other hand, he is pretty much alone in what he does, and this shows in his somewhat fatalistic view of his situation and his publicly stated intention to commit suicide if the symptoms grow too much. This shouldn't be seen as a criticism of Terry Pratchett's choice to live or die – that is, ultimately, his decision – but it does reflect the main problem with our perceptions of the condition, that it is a fate worse than death, a horrible end to be avoided at all costs. 

Such a stigma gets in the way of open debate. Pratchett's intervention may, or may not, be the first step in challenging this, but it remains a damaging influence on how society deals with the disease. This is a vicious circle – without higher visibility, the one thing that could deal with the condition, better funded medical research, is less likely to happen. 

Indeed, Alzheimer's is a Cinderella cause, both in the US and the UK, where funding remains elusive, something to be fought for, quite unlike the mass mobilisation and largesse other diseases receive. Funding in America is a quarter of that spent on heart disease, and a twelfth of that spent on Cancer. In the UK, the difference is even more stark – for every £289 spent on Cancer research, work into Alzheimer's gets only £11.

Yet the numbers of people suffering from Alzheimers are staggeringly high – 820,000 in the UK alone, compared to just under 300,000 diagnoses of Cancer each year, with 1 in 3 people over 65 predicted to die from a dementia-related condition. Beyond this, there are the costs of care – not just the hours lost from carers taking time off, but the direct financial cost this has on their families. And on a particularly stark level, our economy needs more healthy workers to stay that way for longer. 

If we cannot, then, recognise the humanity of Alzheimer's sufferers, let us at least realise it will cost a fortune to support them unless a cure or better treatments are found. The condition has come at too high a cost already.

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Alexander Hay

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