A researcher looking at scans of the brain

Spotting the early signs of dementia: What’s the point?

There is currently no cure for dementia, so why is early diagnosis so important? We explore why it matters for everyone affected by dementia and why we are supporting research to improve diagnosis.

Headlines like ‘A simple test to diagnose dementia’ or ‘New blood test improves diagnosis of dementia’ appear in the media every other day. 

You could be forgiven for thinking, ‘why is diagnosis so important?’ Especially as we don’t have treatments that can stop the condition progressing. It’s important to remember there are lots of ways we can support people to live well with dementia, even in the absence of drugs to slow the progression. 

The truth is, diagnosis goes hand in hand with understanding the causes of dementia and developing new treatments. Diagnosis rates are improving across the UK, but there are still many people living in limbo with symptoms they don’t fully understand. Sadly, the tests used to diagnose people today are not always accurate and it can take months or even years to get the right diagnosis. 

Accessing support 

A diagnosis opens the door to emotional, practical, legal and financial advice and support. It also gives a person access to treatments to manage their symptoms and care. A diagnosis can give people affected by dementia the opportunity to plan for the future and make practical arrangements. 

‘Importantly, a diagnosis helps a person with dementia understand what is happening to them and how to manage and live well with their condition.’

Identifying people before symptoms

You may have heard recently that a number of trials testing new treatments for dementia have failed. We believe this might be because we are treating people once the condition has progressed too far. 

Researchers think changes in the brain associated with dementia may begin up to 15 years before symptoms begin. If we can detect people who will go on to develop dementia and enter them into trials testing new treatments at the very earliest stages, treatments might be more effective.  

There is a second reason early diagnosis is important in bringing new treatments to the people who need them the most. Today we don’t fully understand what may trigger the changes in the brain that ultimately will cause dementia. If we could identify people who will go on to develop dementia at this very early stage we may be able to understand more about what triggers these changes.

Ultimately, this could help us develop new treatments that prevent these changes from happening.

5 novel ways to diagnose dementia

Whilst we have made considerable progress towards earlier diagnosis , we know that there is still much more to do. Alzheimer’s Society is supporting over £3.7m of research across the UK to find a way to identify people with dementia as early as possible using a number of innovative techniques:

  1. Our researchers are developing a simple blood test to identify people who will go on to develop familial Alzheimer’s disease.
  2. A research team at Imperial College London are using cutting-edge scanning and artificial intelligence technique to understand how the proteins tau and amyloid—hallmarks of Alzheimer’s disease—affect nerve cells in the brain.
  3. Our researchers at the University of Cambridge are exploring how we could use virtual reality technology alongside other clinical tests to assess memory and behaviour of people at risk of Alzheimer’s disease.
  4. We are supporting several studies to understand how we can accurately use brain scans to diagnose Alzheimer’s disease, Frontotemporal dementia and dementia with Lewy bodies before symptoms begin.
  5. We are supporting ‘GameChanger‘, a project led by researchers at the University of Oxford that is using smartphone technology to help them understand which changes to our memory and thinking are part of healthy ageing and which are early signs of dementia.

Progress we've made

Alzheimer’s Society has been funding research to improve diagnosis for over 30 years. Our researchers at University College London have used Magnetic Resonance Imaging (MRI) to show how the brain shrinks with dementia. This is now recommended in NICE clinical guidelines for the diagnosis of dementia. Other work at Newcastle University has shown how imaging techniques can help differentiate between Alzheimer’s disease and Lewy Body dementia, which is important to guide management of the disease. 

We have also worked to support GPs to make diagnoses. Research has shown GP education and decision support helped GPs to diagnose dementia. This supported our ‘Worried about Your Memory campaign’ which encourages the public to visit their GP if they are concerned about their memory.

‘Since the start of this work in 2012, the national recorded diagnosis rate has risen from has 33% in 2012 to 66% in 2017 .’

Looking forwards

Research will beat dementia. Alzheimer’s Society is committed to supporting research to improve care for today and develop a cure for tomorrow. We must find a way to improve diagnosis and support the development of new treatments in parallel so we can maximise the chances that these new treatments will slow down or even stop the progression of dementia.

What research are we funding?

We are investing £10 million a year into dementia research. We fund a variety of dementia research projects and initiatives across the UK to help improve care, understand causes and work towards a cure.

See current research projects
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I see no point in early diagnosis. The support from GPs, social services, care homes, some family is atrocious. I've just buried my father who had vascular dementia. He was severely malnourished through poor care during his final weeks in a care home in York. We have fought for years for good care. Sad. It's not so much about diagnosis...the care system is broken.

Clare, whilst I cannot possibly comment on your individual case, I want you to know my father died in care, he was 6ft 1, and a stocky man.....he died a 5 stone skeleton, but that man ate like a horse for 6 years , the care home looked after him as well as anyone could...he had vascular dementia. This hideous disease robs the body of everything including the goodness that food provides....I am now watching my Mum also waste away to nothing with this disease...I am beyond words as to what this disease has taken from me and my family.

Earlier diagnosis would have helped me to help my husband live well with dementia. For over 3 years all test results were considered normal, but my husband was in the early stages of young onset Alzheimer’s disease. Because the neurologists said it was an attention problem, definitely not a degenerative one, my husband didn’t get the help and support he could otherwise have had.

When we finally got the diagnosis sadly there wasn’t much time to “live well” as the disease advanced rapidly.

Fortunately diagnosis has improved over the last 10 years, so please don’t ignore your concerns. It’s much better to know early.

My Mum died when she was two weeks away from her 64th birthday, having been diagnosed at 55 which is relatively young for this disease. It was such a shock to our family because of that, and because she was the one with the best memory, the best get-up-and-go attitude and best always-putting-others-first approach to life - I know there will be scores of others who will say the same, and I still share their bewilderment and distress 10 years on. Both my remaining grandparents were diagnosed with liver and bone cancer a couple of years later and obviously their care became an important factor for us too. Whilst the (wider) care system does need to be reviewed the more arguments there are for funding early diagnosis can surely only help families with what they have to endure and to feel that there is something they can still do to help secure the best support for the person that matters so much to them. Sadly we might have to accept there might never be an actual cure for Alzheimer's but finding ways to help people still live their lives in the best way can only be a good thing, which would surely be a good outcome for their families too; my Dad has as a result, had to 'enjoy' his retirement, my brother's wedding and our grandchildren on his own - it's such an awful, awful shame he's not had the opportunity to share great days out, family parties, birthdays, Christmas and funny stories with the person who meant so much to him.

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