When would you want to know you had Alzheimer’s disease?

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By Prof Jonathan Schott | Sunday 29 December 2019

Would you want to know if you or a loved one had Alzheimer’s – a disease that currently has no treatments to slow, stop or prevent it – before you developed symptoms? This is understandably a frightening and tough question to answer.

In Alzheimer’s Research UK’s new report, Detecting and Diagnosing Alzheimer’s disease, we discovered that for nearly three quarters (74%) of UK adults, the answer would be ‘yes’. And that while 33% would want to know two years before symptoms showed, 38% would want to know as many as 15 years before. Perhaps surprisingly, these results were the same whether or not a life-changing treatment for Alzheimer’s disease was available.

While detecting Alzheimer’s disease in people without symptoms is not currently appropriate in clinical practice, advances in research mean that this is a conversation we need to start now. Promisingly, the results of this report tell us that the public is ready and willing to join this conversation.

We currently diagnose Alzheimer’s – the most common cause of dementia – once symptoms appear, but this can be years, or even decades, after the disease has started damaging the brain. It is widely believed that by this point in the disease process, any damage done will be irreversible. If we could intervene much earlier, we would stand a better chance at having a major impact on the devastation dementia causes.

That means it is of critical importance that we start talking to people about the value of picking up Alzheimer’s disease and related disorders early, because doing that will speed up ongoing efforts to bring about life-changing treatments.

This is particularly pertinent now as the first potential medication aiming to slow the brain changes and progression of mild Alzheimer’s disease is currently being considered for licencing in the US. If this drug, or one like it, were approved in the UK in the coming years, the way a diagnosis is given in the NHS would need to radically change, especially for people with mild symptoms. So now it is up to the dementia community, from the NHS and clinicians, to charities like Alzheimer’s Research UK, to turn these discussions into action.

As well as determining that the public have an appetite for early diagnosis, this work also evaluated attitudes towards different tests that might be used to achieve this. Unsurprisingly, less invasive tests were preferred over more invasive ones, underscoring the need to continue to support ongoing research efforts to develop blood tests, and new techniques such as eye examinations or digital data approaches for accurate diagnosis.

In the meantime, we must focus discussions with patients and clinicians on the use of existing diagnostic techniques, including PET scans and lumbar punctures. These have the potential to improve the accuracy of a diagnosis of Alzheimer’s disease now; but our use of them might need to change both if new treatments became available – particularly if these were most effective when given very early, and perhaps before symptoms emerged.

These findings demonstrate the importance of continued research into Alzheimer’s disease and other forms of dementia, so we can improve lives today and deliver the life-changing treatments of tomorrow.

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About the author

Prof Jonathan Schott

Prof Jonathan (Jon) Schott joined Alzheimer’s Research UK in November 2019, as our Chief Medical Officer.

The Chief Medical Officer is an important new role for Alzheimer’s Research UK, providing the organisation with clinical expertise and advice to help drive forward our research priorities, as well as being an important Ambassador for dementia research.

Jon brings a wealth of clinical knowledge to this role.

He is Professor of Neurology at the Dementia Research Centre, UCL where he leads on a number of clinical research projects, with one being Insight 46 – a major Alzheimer’s Research UK funded neuroimaging study of the MRC National Survey of Health and Development British 1946 Birth Cohort. He has published over 240 papers in the field of dementia and ageing.

Jon is also an Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, Queen Square where he runs a busy cognitive disorders service with a particular emphasis on young onset and unusual dementias.

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