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. 

What's the latest research in dementia diagnoses?

July 2019

Exciting research from the United States trialled 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.'

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 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.  

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

This post was updated and republished in March 2020.

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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.

Clare, 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..

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.

No 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..

I 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

One 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.

I do not wish to sound cynical but early diagnosis for what. A few leaflets as you are discharged from the Memory Clinic, back to a GP you realise has no real knowledge of Dementia, left to stumble around in the dark as you look after a loved one. Just sounds like old flannel to me. The Care system is not under pressure, it is effectively broken. I use to think this was a decent country but my experience of Dementia in a loved one has changed my mind. Prattle on about early diagnosis conveniently forgetting the care system can do very little, the health care system not much more. Let’s be blunt . Hello Mr Jones I regret to tell you in Five years you will start your Dementia journey. No effective treatment, huge care costs, society will not care on the whole, etc. No please do not cry it is so much better to have an early diagnosis. At least that is the PR spin I am told.

Maybe there’s still little point in an early diagnosis - there’s nothing that will stop the progress of the disease and it would be so depressing to know you had it.

My nana and aunt both died after living with dementia, I have an aunt who is living with dementia all on my mums side, last week I managed to get my mum to the GP as I could see the same signs over 6 months ago in my mum, she and my dad however which I totally understand was in denial, it had to come from her which last week it did she got really upset and told me she is scared because her words "I know what's happening I went through it with your nan" we visited the GP who did a blood test and spoke about mum going to the memory clinic for tests, this scared her to much right now again I understand. I am looking for advice/support on what to do or where to go from here? Any advice would be greatly appreciated.

Hi Michelle,
Really sorry to hear about this experience with your mum - that sounds really difficult for you both.
It sounds like you are doing the right things by visiting the GP and the memory clinic. Although this can seem scary, if your mum is diagnosed with dementia it will be easier for her to access support and treatments.
This page on our website outlines some of the other reasons why having an assesment for dementia can be really important: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/dem…
If you or your mum would like to speak to somebody about the situation, please know you can call our support line on 0333 150 3456
Hope this helps,
Alzheimer's Society blog team

After two MRI scans had been reported as normal and the neurologist said the symptoms did not match Alzheimers I did seek a second opinon.
The second medical expert reviewed both MRI scans and diagnosed my wife with early onset alzheimers.
This wasted two years when my wife could have been on medication to slow down the progress and had a support package around her.
This is lost time with a loved one you can never get back.

I was diagnosed with Alzheimers last January. I am now 68. I was having epileptic episodes, increasing in number over the years. The consultant was trying to find the right medication and dosage and, began to be suspicious there was something else going so, he sent me for brain scans/tests for Alzheimers. I was then diagnosed with Alzheimers. He immediately put me on donapezil which has been very helpful. If he hadn't investigated further I might not have found out for some time. Looking back I had felt great anxiety, such frustration when I did silly things such as not been able to use a cash machine, losing my way and being very unreasonable and sometimes nasty at home. Apart from the donapezil helping, just knowing what was wrong was a relief and I feel much calmer and able to manage better.

Having worked in carer support in Perth Australia for 5 years, and experienced both my parents with dementia, Mum with Alzheimer's and Dad with vascular dementia, I can only endorse the importance of an eraly diagnosis. It gives an opportunity to learn about which dementia you are dealing with, which medication will suit, the difference in behaviours to expect and therefore develop strategies to cope with. More importantly, it will give the primary carers the opportunity to help their loved one to live as rich a life as possible. So inconclusion, not just an early diagnosis, but an opportunity for carers to be educated about the disease, how to communicate, self-care, and a myriad of other coping strategies to support the families.

19 weeks ago my Husband had a total Knee replacement, he had a bad reaction to the drugs used and the matron mentioned it could be un-diagnosed vascular disease, he had always had a shocking memory usually around my birthday! over the weeks he improved greatly but his short term memory is awful, he is 78. We went to the DR. who was very understanding, he did a blood test, all negative, then went for an MRI, the result showed thinning of the lining of his brain, in line with his age, so good news I thought, bur reading the reviews have left me feeling a bit scared again, should I get a second opinion? the Drs. have arranged an appointment to a memory clinic. I can cope with him getting older, slower,lazier and being dozy, but the thought of Alzheimer's and dementia scare me to death, I'm a lot younger and do not have any family or friends really, just me and my Husband.

My question is maybe silly but i read about dementia how it effects the mind. I know you do blood test to diagnose t but for a novice how would one know when to approach gp what are signs we need to look for, i myself have times i can forget what day or where i put things spend hours looking even yesterday i put my mug away due to landlord doing work in kitchen but when family member asked where i put it could i remember even lost my cigarettes last night had to retrace rooms i been in

Hi Ken sounds like we may be able to help each other being as your memory problems sound very much like mine so here is how far I have got with researching Dementia.
First the good news is I had a brain scan about a year ago which I was told ' showed nothing remarkable' that behind me I was very pleased for best part of last year to be in a community support role for an elderly person with dementia which enabled me to explore a circadian model meaning, is there a seasonal pattern to dementia? (after reading about the sundowner effect)
With that in mind I was not impressed by a GP opinion in late autumn that he would be surprised if the patient lasted till Christmas and even less impressed when a priest visited in early December to read the last rites which told me I was the only one who had any hope that as much as the patent had deteriorated it was just a predictable stage in the journey so I was delighted to be informed a short time later that the patient had confounded both those professional opinions and had perked up and is now looking on track to see not only the soon coming spring but I hope also one more summer.
While its true that everyone is different every one with dementia shares the same sun which sets the the daily and the seasonal circadian rhythm and from what I have read about Dementia many people with it are not at there best come autumn and winter time, so like knowing when a big bill is due helps prepare for it, I believe knowing when the patient may not be at there best can also help prepare for it.
I have also read some reports about the difficulty with numbers researchers have found with dementia so would like to know how common this is and if it occurs as part of dementia or has it been a problem long before dementia was diagnosed.

Hi Ken Your memory problem sounds so much like mine I wonder if you also have a difficulty with numbers,?

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