How early would you want to know you have Alzheimer’s disease?

Say you are in your fifties or sixties, and one or both parents died recently of (or with) a diagnosis of Alzheimer’s disease? Possibly you were the carer and saw the suffering at first hand?

Wouldn’t you be scouring the internet to find if there is likely to be any cure or alleviation for AD in the offing? And would you want to know as early as possible so that you can put your affairs in order and be ready for any cure for early disease as soon as it comes along?

That is obviously what governments think people want.

In the UK GPs are going to be rewarded (to the tune of over £3000 per practice) for assessing patients over 75, and those in at-risk groups such as those having diabetes or vascular disease, for signs of poor memory and dementia. In the USA, Medicare insurance will now pay for annual wellness checks which will include checking on changes in thinking abilities.

Well, isn’t that wonderful? Governments are actually doing something useful, one would think.

However, what is the point of all this?

Firstly, there is no evidence that any treatment at the moment helps those diagnosed with early or pre –AD. The much lauded drugs for dementia, the anticholinesterases, have a slight effect in improving short term thinking abilities in people with established, moderate or severe AD, and do not work, and so are not licensed, for early dementia. Sp picking it up early will not do any good at all. There are no other drugs in the offing either. So you would undergo some pretty invasive tests, including a lumbar puncture, MRI scans and blood tests, for no benefit.

But wouldn’t you want to know to put your affairs in order? Well you might, if you were sure that the diagnosis was correct – in other words that you would definitely develop Alzheimer’s disease.

But the state of the art memory tests at the moment do not do this accurately.  A recent analysis suggested that, “ if a clinician saw 100 consecutive people in an area where we know that 6% have dementia using current criteria he or she would correctly identify four of the six but would incorrectly identify dementia in a further 23 people.⁴¹”

So 23 out of a hundred might be told they have AD when they haven’t! Even if they do have signs of dementia many will improve rather than deteriorate.

No thank you.

The beneficiaries of this are the usual suspects – Pharma companies hoping to sell more drugs especially anticholinesterases which are prescribed often for early AD even though it is known they don’t work, because of patient pressure (at a cost of about £1000 per year per patient); companies making the tests, biomarker testing (cerebrospinal fluid measurements of amyloid and tau) and companies making scanning machines and so on.

It is likely that lifestyle changes, (losing weight, not smoking) would prevent more AD than any treatment, so we all ought to make these changes anyway without waiting for wellness checks to tell us to do it. Putting our affairs in order is something we all ought to do.

Then the money spent on these initiatives could be spent on proper research studies especially on the over 80’s who have hardly been studied at all up to now, and on much more care for those who already have AD and their carers.

BMJ 2013;347:f5125