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

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.

5 Comments

  1. Sam on 31st December 2019 at 7:34 am

    I have seen reports from other countries that have found much higher proportions of participants wishing to know their diagnosis early. Do you think the differences could be down to different attitudes between countries, or could it be due to differences in the questionnaires or the demographics of the participants?

    • Alzheimer's Research UK on 29th January 2020 at 5:33 pm

      Thank you for your question, Sam.

      There will always be slight sampling differences between different surveys, and it’s likely that small differences in the way questions are asked may also account for some of the different results we see. Public attitudes do also seem to vary depending on demographics and country of origin.

      In 2017 Global Healthcare company MSD conducted a poll across 12 European countries, which provided a unique insight into European attitudes to Alzheimer’s disease. The results show that the public’s understanding of Alzheimer’s broadly translated into an appreciation of the benefits of earlier diagnosis and a willingness to find out if they had an increased risk of developing the disease. But the poll also revealed different attitudes in different countries: for example, in Germany, more people agreed than disagreed that ‘even if it’s medically possible, we shouldn’t diagnose someone with Alzheimer’s disease before symptoms develop’. However, 68% of people surveyed in Poland strongly disagreed with this statement.

      Meanwhile Alzheimer’s Research UK’s Dementia Attitudes Monitor Wave 1, published in 2018, provided us with some additional insights into people’s understanding. While this survey also revealed broad support for early diagnosis of diseases like Alzheimer’s, we did find differences in opinions between groups, with younger people and people from Black, Asian and minority ethnic backgrounds reporting less certainty about the value of a formal diagnosis.

      For more detailed insights, you can download our full Detecting and Diagnosing Alzheimer’s Disease report.

  2. Joanne on 6th January 2020 at 8:09 pm

    Surely if we can know in advance, and other life changing illnesses are, we could get out head round it and get out and of life, will, on a. ect in order whilst we can understand it and not leave a mess for family to sort out when we can’t.

  3. eileen cox on 18th January 2020 at 9:15 pm

    I’m extremely worried about my memory as is my husband. I saw a psychiatrist and the memory test he did was only asking about my name, age,address, country I didn’t feel I had a proper examination.

    • Alzheimer's Research UK on 28th January 2020 at 2:08 pm

      I am sorry to hear about your experience Eileen, I hope this information is useful.

      Memory problems can become more common with age and can have a range of causes other than dementia, such as a vitamin deficiency or an undiagnosed thyroid disorder. It is best to book an appointment with your GP so they can run tests to rule out these possible causes. They will also ask questions about your symptoms, and do some further simple memory tests.

      If the GP thinks you may have a form of dementia, they will refer you to a memory clinic or a specialist doctor who will run tests to look at your symptoms in more depth, and may offer you a brain scan.

      You can find out more about the causes of memory problems, and how dementia can be diagnosed in our booklet ‘Problems with your memory?’ linked here:

      https://www.alzheimersresearchuk.org/wp-content/plugins/mof_bl_0.2.9/downloads/MEM-0619-0621_JULY%202019_WEB.pdf

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Jonathan Schott