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.
vera eade
saysAnne
saysI have diabetes cognitive impairment and depression. Are all these linked?
It is really demeaning and upsetting when self aware of challenges that others say "I do that too!". As old but with awareness generally I know when I fall down on memory. I don't need patronisatiin.
Anonymous
saysHi Anne, thanks for getting in touch.
It is difficult for us to comment on individual cases of things such as medical history.
However, in our factsheet about mild cognitive impairment (MCI), depression is mentioned:
'Some people with MCI have mild memory loss that started gradually. These people are likely to develop Alzheimer's disease as their memory worsens.
Some people with MCI will turn out to have a different, often treatable, cause following assessment by a doctor. This could include depression, anxiety or stress. The same symptoms could also be caused by a physical illness (such as constipation, infection), poor eyesight or hearing, vitamin or thyroid deficiencies, or the side effects of medication.
'Where this is the case, the person will be diagnosed with this condition – a thyroid deficiency or depression, for example – rather than MCI.'
You can read more from our MCI factsheet here: https://www.alzheimers.org.uk/about-dementia/types-dementia/mild-cognit…
We hope this is useful for now. If you would like more information, we would recommend calling our advisers on 0333 150 3456. Details about opening times are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
Alzheimer's Society blog team
Fred Shulman
saysDO NOT GIVE UP ON PRAYER AT LEAST ONCE A DAY! IT WORKS FOR ME. WHY NOT FOR YOU?
Fred
Nancy Jacobs
saysI am interested how the stories differ, it seems the diagnosis is not always straight forward. With my husband the course has been very difficult. He has a history of a long term diagnosis of mental illness, he has been assessed as having Frontal Lobe deficits, Behavioural variant Frontal Temperal Dementia Phenocopy Syndrome, which I am told is not dementia, even though the neurologist who diagnosed it said it was, because the Memory Clinic say, it is not progressive. Since no one has recently assessed him how do they know? He also has late stage Parkinson's Disease. This causes a lot of problems, as they listen to him, but he is often wrong.
Anonymous
saysHi Nancy,
Thanks for your comment. We're really sorry to hear that you and your husband have been going through such a difficult time.
Please know that you can always call our Dementia Connect support line on 0333 150 3456 for information, advice and support specific to your situation. More details about the support line (including opening hours) is available here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this is helpful,
Alzheimer's Society blog team
john
saysi think my wife has the first signs of dementia , she forgets things she only did a few seconds before , she will switch the iron on ready to do some ironing , but forgets she has put it on , it has some times been on for hours , when she has been cooking , she turns the rings down , not off , then puts the pans back on them , she forgets to shower , she always looses her phone and house keys , after she has just had them in her hand , she remembers things that is a routine for her , but i am very worried
Rosaleen Wilson
saysMy mom was diagnosed with dimensa a few years ago and it is now getting worse. She won't accept she has it she just says everyone forgets things. Only problem is she asked my daughter to make sure everything went ok and properly if anything happened to her as mom trusts her. This has a big flare up in the family with my daughter having power of attorney. Mom doesn't remember any of it and it's now got to the stage we gave been accused of stealing her money even though we have said to get all the statements printed off from when the account was opened and they can see every penny was there. Due to all this we can't see my mom and I'm completely heartbroken as mom is 88 and I'm the only girl. My daughter has relinquished power of attorney sent all the bank details to my mom in registered post.
I'm frightened I'm not going to see my mom alive ever again.
priscilla rina
saysMy husband has a mild dementia and it was discovered by our GP more than five years ago . He was referred to Memory Clinic and after so many check up and consultations he was prescribed to take Donepezil 5MG. Being diagnose the sickness early is very helpful in my opinion.
Terry pike
saysHi Ken Your memory problem sounds so much like mine I wonder if you also have a difficulty with numbers,?
Ken Robbins
saysMy 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
Terry pike
saysHi 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.
Peter Mageean
saysE Green
says19 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.
Deborah Fleming-Prins
saysHaving 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.
Charles Macdonald
saysDeborah, I found your comment very interesting. My mother, 89, is getting increasingly forgetful. She recognizes this. She's otherwise very healthy and a great walker. I've been mulling trying to get my mother in to see her GP. However, I think my mother would react badly to mention of the word "alzheimers". She lives alone in Scotland (I'm in Sydney). She's always prided herself on being active and healthy and I fear that a positive diagnosis, when she lives alone, would be hard for her to bear. And yet your article makes me realize that an early diagnosis allows early treatment and clarity on the way ahead. So, do I grasp the nettle and have a very hard conversation with my mother or is this something that I can gently press over some months?
Frances Reed
saysI 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.
Derek Nicoll
saysFrancis,I was pleased to read your story.It was very helpful to me.I was diagnosed with early onset Alzheimers around last October. I have now progressed to donepezil 10mg though it took a while for the bowels to settle down .I am 68 too and I keep myself in what I consider to be above average physical fitness with considerable amounts of brisk walking and cycling when the weather is not too inclement. I had read in one of the large broadsheets that brisk exercise can be very helpful to the brain. I also think a careful diet is very useful.I try to eat more fish and little meat.It may be oily fish is particularly good such as sardines , mackerel ,tuna. Get plenty of sleep .At least 7 hours in comfortable surroundings and eating a few hours before. I am waiting for a specialist review and wonder whether there is an additional medication that can be taken .I know that there are others. All the best .
Andrew
saysAfter 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.
Michelle
saysMy 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.
Anonymous
saysHi 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
C Kain
saysMaybe 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.
Mark Bailey
saysI 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.