Dementia Support Line
Research
Why spotting the early signs of dementia is so important
There is currently no cure for dementia, but recognising the early signs and symptoms is still very important. We explore why spotting the early signs matters for everyone affected by dementia and why we support 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 treatments that can stop diseases like Alzheimer's disease from progressing aren’t available in the UK yet.
However, with clinical trials now showing positive results, an early and accurate diagnosis will be important to find those that are eligible for disease modifying treatments when they are available.
It’s important to also 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.
Also, even though 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.
What our research in dementia diagnoses tells us
July 2019
Exciting research from the United States tested a blood test in 158 people. It was 94 per cent accurate in identifying who would go on to get Alzheimer's disease. This was a huge breakthrough and proceeded to go through further testing with a larger group of people.
March 2020
A blood test that detects a form of the protein tau, showed early signs that it might be used to differentiate between Alzheimer's disease and frontotemporal dementia (FTD).
It is early days for this test but shows again how fast this area of research is moving.
Fiona Carragher, Chief Policy and Research Officer at Alzheimer’s Society, said:
'A quick and easy blood test that can differentiate between Alzheimer’s disease, frontotemporal dementia or mild cognitive impairment would be an invaluable tool revolutionising the search for new treatments.'
February 2023
Recent research from the USA has improved the accuracy of blood tests for Alzheimer’s disease. Researchers at the University of Pittsburgh developed a blood test that detects a specific form of tau that only comes from the brain. The test can detect Alzheimer’s disease with an accuracy of 86-99%.
Another group at the University of Washington, USA has developed a way of detecting a toxic form of amyloid in the blood, which can detect Alzheimer’s disease with 98% accuracy.
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 Alzheimer's disease before symptoms appear
You may have heard that a number of trials testing new treatments for Alzheimer's disease have failed. We believe this might be because we are treating people once the condition has progressed too far.
Research funded by Alzheimer's Society showed that changes in the brain associated with dementia may begin up to fifteen 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.
In fact, recent trials testing drugs in people with early Alzheimer’s disease are having positive results.
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.
3 novel ways to diagnose dementia in the early stages
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 £3.2m of research across the UK to find a way to identify people with dementia as early as possible using a number of innovative techniques:
- Professor Geoff Parker at UCL is leading work to develop a faster way of carrying out accurate MRI scans to diagnose Alzheimer’s disease so they are more cost effective than CT scans which are currently cheaper but less detailed.
- Dr Dennis Chan and his team at the University of Cambridge are exploring how we could use virtual reality technology alongside other clinical tests to assess the memory and behaviour of people at risk of Alzheimer’s disease.
- In another project, Dr Timothy Rittman is looking to see if a brain scanning technique that measures the connections between different brain areas can be used to detect rarer types of dementia.
Progress we've made in dementia diagnosis
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 rose from 33% in 2012 to 66% in 2017 .’
This has now dropped to 62.5 in December 2022, after a drop during the covid-19 pandemic. We are working hard to encourage the Government to address this issue.
The importance of dementia research
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.
Support dementia research today
Your support could fund life changing dementia research.
This post was first published in March 2020 and most recently updated in February 2023.
Sandra Heard
saysOne of my family was eventually diagnosed with lesions to brain tissue suggestive of vascular dementia and also other characteristics that could be Lewy body dementia. The person was then prescribed skin patch Rivastigmine -which caused scratching and itching for months rather than a restorarative night's sleep. This med has now been changed to Donepezil tablets. to be honest i do not know if any of these make matters better or worse. The only thing I have found to be critical is daily attention to bowel movements as once that area goes wrong the person finishes up constipated, hallucinating and in hospital for weeks with delirium , leaving hospital with reduced mobility after not being allowed to move about alone. I' m backing prunes over pills.
Jeff Hindle
saysI would be interested in how to be tested for Alzheimer’s disease as my father passed away with this in 2010 and from what I read about it earlier diagnosis may well be vital to improve quality of life. I am happy to be contacted on how to go about this . At present I am not aware of any symptoms thanks Jeff
Debbie Fullbrook
saysNo support from GP for my husband who has got slowly worse over last three years. No diagnosis . He did have a brain scan but the neurologist who reviewed it spoke little English and the report was normal signs of aging. Getting a feeling I will have to take him to private neurologist ..but that will have to be followed up privately..
Emma
saysMy 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.
Suzanne Misun
saysEarlier 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.
Clare Williams
saysI 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.
Val
saysClare, 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.
Betty DeLay
saysClare, you are spot on. My mother lived in a senior citizen complex, walked miles a day..but her mind was failing her. I worked full time could not be with her daily,lived 30mi.away. She slowly began failing, in her memory. Forgetting where things were, swearing someone was stealing from her. I put her in a Senior home...first day there, her small change purse was stolen, by the workers. She had $700.00 in it,all she had. I know, I saw the money, but in the small little purse was tissue paper with a small handful of dark hair, neatly tied with a ribbon...That's all my 85 yr.old mother cried over and wanted. Her little girl 5yrs.old was hit by a car, and was dragged around 80ft before the driver stopped, of course it killed her. My mom with a broken spirit, managed to get her hair off the road, what she could, wash the blood out wrap it in tissue paper put it in her small change purse. My mother was in her 60's at the time..25yrs.later she had a touch of alziemeirs, went to a very nice nursing home... Her 1st week there her small little change purse was stolen, they could not get her to stop crying, I went to see about her.. They could not understand....I talked with Mom, the money was nothing, nothing, the hair they threw away, literally broke her heart, for the second time..All she wanted was her babies hair back, its all she had of her little girl...My mother continued to go down hill...She was there for years, but that precious tissue in her small purse, sent her to the end faster then if they would have shot her. She never got her money back or her purse... My advice to people , if you have a loved one going into a nursing home keep their priced possessions out...The ladies that stole from her will reap …The care system is broken.. no one seems to care about the elderly. Its all about the money..