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How can wearables revolutionise the detection of dementia?
By Dr Carol Routledge | Monday 10 February 2020
Today we’re announcing an ambitious project that will transform research efforts and revolutionise the way we spot the early stages of diseases like Alzheimer’s. The Early Detection of Neurodegenerative diseases (EDoN) initiative is spearheaded by Alzheimer’s Research UK and brings together 14 leading research and support organisations, working to develop innovative ways to pick up these diseases in the brain years before the symptoms of dementia start.
The importance of early detection
At the moment, we can’t trial potential Alzheimer’s medications in people until they are showing symptoms of the disease. But these symptoms only emerge after the disease has been underway in the brain for as long as twenty years.
Much like trying to tackle a late-stage cancer, this is much more difficult task and it is likely to be a big part of why experimental Alzheimer’s drugs, which show promising signs of being able to tackle key disease-processes, haven’t yet been successful in clinical trials.
Many researchers believe that we may have already developed effective Alzheimer’s treatments that can slow the progression of the disease. But because we can’t identify people with the disease early enough, they are languishing in a lab instead of changing people’s lives.
We urgently need to improve disease detection to unlock the potential of future treatments, both for Alzheimer’s disease and for other diseases that cause dementia. And advances in technology offer an important opportunity to do just that – just as we have already seen in other areas of science.
The weather forecast
Weather forecasting works by carefully measuring factors like temperature, air pressure, humidity and many other atmospheric conditions, and then using this information to predict what is likely to come next.
Meteorologists can see what set of conditions have preceded particular weather events in the past and use that data to help determine what is likely to happen in the future.
The days of people poring over charts to make these predictions are long gone. Today, sophisticated computer programmes are able to integrate and analyse weather data to give (although it doesn’t always seem like it) astonishingly accurate forecasts.
When it comes to predicting dementia, we don’t have such a sophisticated approach. In fact, despite brain changes that lead to dementia getting underway many years earlier, currently we can only identify that a person has a disease like Alzheimer’s when symptoms are already impacting their life. This is a bit like forecasting a blizzard when you’re already tramping through snow.
But, just as there are many measurements we can take to predict weather, there are aspects of our behaviour and physical health that we can monitor to detect diseases that will go on to cause dementia.
EDoN
Changes to our speech patterns, how active we are, the way we move, even how often we contact our friends, can all provide vital clues about the health of our brains. And now, digital technology has the potential to detect these changes, even when they are so subtle that they could never be spotted by the human eye.
Devices like smart watches and fitness apps are already generating mountains of data relevant to our health. And advances in big data and machine learning are providing tools to combine and analyse this data so that we can make sense of the new digital health landscape.
This month we have launched a global initiative to develop digital data “fingerprints” to pick up very early signs of neurodegenerative diseases like Alzheimer’s, which can be detected using wearable technologies.
EDoN brings together world leading experts in data science, digital technology and dementia. They are mapping changes in digital health measures, such as sleep, gait, eye movement and speech patterns, onto clinical changes such as those we see in brain scans.
Specialist data teams can then identify the pattern of change in digital health measures that appears when a person has the earliest biological signs of a disease.
This pattern of change forms a signal. If people are wearing a digital device that could measure all of these changes, we would be able to see when this signal appears in the data and identify someone with a disease like Alzheimer’s even though they are not showing any obvious symptoms.
EDoN will refine these signals by testing them in different groups of people and making sure they are as relevant and reliable as possible.
EDoN aims to move disease detection 10 -15 years earlier than today. A breakthrough like this would represent a research revolution allowing us to study and understand more about the crucial early stages.
Ultimately, the EDoN initiative aims to develop a device that would be provided to people by their doctor, who would be able to interpret the data to help identify people with the early signs of a disease. This would empower people to make lifestyle changes that could delay the onset of the symptoms of dementia.
Thanks to your support EDoN will radically speed up the search for effective treatments and make life-changing breakthroughs possible.
Taking part in EDoN
In the first part of the project we will be working with people who are already involved in ongoing research studies. We expect that people will be able to take part in the testing once it starts to be rolled out to a wider population, but this will likely be a few years down the road
Anyone who is interested in taking part in other dementia research studies, including research into early detection, can do so by registering to Join Dementia Research.
Find out more about EDoN at www.edon-initiative.org
Donate today to help make breakthroughs possible.
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About the author
Dr Carol Routledge
Carol was the Director of Research at Alzheimer’s Research UK up to 2020. Carol moved to Alzheimer's Research UK from the Dementia Discovery Fund, where she was a Venture Partner with a key focus on identifying and developing novel disease-modifying mechanisms for the treatment of all types of dementia, sourcing opportunities from academic research groups and small companies.
Tags: Our work
I think moving forward with early detection of Altzhimers is a must.
I would be happy to volunteer. My Mum and Grandmother both suffered with this awful decease
I totally agree with your thoughts.
Excellent work
Unfortunately can not afford to give donation
Are you seeking volunteers to help in this initiative? If so I would certainly like to volunteer.
I would like to volunteer for any trial if its possible to do so.
I would like to volunteer when available.
Like to volunteer if possible
Very happy to volunteer for this. Just let me know what I need to do.
I would like to volunteer as both my parents suffered with this terrible disease
So would I.
Hello Keith,
Thanks you for your interest in this initiative. The first step for this research will involve ongoing studies that have already recruited participants.
We expect that there will be opportunities for new volunteers to take part a little further down the road and we will be sure to communicate these as widely as possible.
In the meantime, the best way to find out about taking part in dementia research studies is through a nationwide register called Join Dementia Research. When you register, you provide some personal details relating to your health, location, age and so on. These details can then be viewed by approved researchers and are used to match you to studies that you are suitable for. You will then be contacted by a researcher if you are eligible to take part in a study.
Join Dementia Research is not a research study itself but a place to register you interest in volunteering for studies. Signing up to the register is not a commitment to take part in any particular study, it just allows researchers to make contact with potential volunteers.
You can find out more and register with Join Dementia Research via the website: http://www.joindementiaresearch.org , or by calling us on 0300 111 5 111 (9-5pm Monday to Friday). The registration process takes 10-15 minutes over the phone.
Can you have a test as my mum and grandmother suffered
Hi Jayne,
There are currently no tests available on the NHS to tell you if you will develop dementia in the future. If you are worried that you are experiencing symptoms of dementia, such as memory problems or confusion it is best to make an appointment with your doctor to discuss this.
They will do some initial assessments and if necessary refer you to a specialist clinic for further memeory and thinking tests, and maybe a brain scan.
Dementia is rarely directly inherited, many people have had relatives with conditions like Alzheimer’s and do not develop it themselves. If you would like to find out more about genes and dementia you can in our booklet here https://alzheimersresearchuk.org/wp-content/plugins/mof_bl_0.2.9/downloads/GEN-1118-1120%20WEB.pdf
When will the wearables be available
Is there an trial for this wearable?
This sounds fantastic. If a wearable could be developed, why would they only be available from a GP? I for one, would gladly buy mine, and volunteer
Hi Pat,
The EDoN initiative aims to one day develop a device that could be provided to people by their doctor, who would then be able to interpret the data helping identify people in the early signs of a disease like Alzheimer’s.
For someone who has a strong family history, or is concerned they might develop dementia in the future, this would be a way for doctors to idenetify who is most at risk. In turn this would mean the right people could be treated, and could be supported to make lifestyle changes that could delay the onset of the symptoms of dementia.
In the early stages of this project, volunteers will be recruited from existing research groups called cohorts. If you would like tot ake part in other vital dementia research, you regsiter your interest in volunteering via a service called Join Dementia Research here https://www.joindementiaresearch.nihr.ac.uk/
I would be happy to volunteer for this project too.
I did volunteer last year but technology wasn’t comparable to apple I phone. Is this still the case
Would it be possible to include my partner Patricia Joiner, in this research programme. She has a cognitive impairment which I notice worsens when she gets stressed. She can become aggressive ( not physically) when her actions are questioned & I really do not wish to loose her to dementia.
She has attended the Memory Clinic & has had a couple of scans. Like all diseases, the earlier you catch it the better chance you have of a cure.
Hi Paul,
While the EDoN project is still in it’s early stages it will not be recruiting volunteers outside of existing dementia research groups.
There are lots of research studies for people with a diagnosis of Mild Cognitive Impairment to tkae part in, you register to a service called Join Dementia Research here https://www.joindementiaresearch.nihr.ac.uk/
Once registered your wife will be matched up with studies she is eligible to take part in, including clinical trials testing new treatments.
If you require any medical advice or information about your wife’s symptoms there is a fantatsic servic run by specialist dementia nurses. Admiral Nurses Direct can be contacted on 0800 888 6678 or via email helpline@dementiauk.org
As someone who lives alone I have a very strong interest and would welcome being a volunteer in order to be advised of and recognise changes in my life
I would also like to volunteer. I have seen both my parents come done with dementia related diseases. It is so sad.
I would be interested in volunteering
My name is Dr Roy Cecil. I have participated in the past in the UK Biobank Project and would like to volunteer for the Edon Project. I am 76 years old. I am not a medical doctor but have a Ph.D in Oxidation Chemistry. I worked for BP for 40+ years on the technical/marketing side. Recently, I have noticed a decline in my mental agility and would like to volunteer for the Edon Project. My wife is 72 years old (Janet Lesley Cecil) and has also become forgetful. She is prepared to also act as a volunteer if appropriate.
I certainly would like to volunteer if and when you need volunteers for this initiative.
I would like to volunteer, but I take antidepressants.
But I do believe I have early stages of dementia!
I would like to be tested in strict confidence, but I can’t go to my Doctor.
My mum had dementia.
Dear Daisy,
Thanks you for your interest in this initiative. The first step for this research will involve ongoing studies that have already recruited participants.
The best way to find out about taking part in dementia research studies is through a nationwide register called Join Dementia Research. You can find out more at http://www.joindementiaresearch.nihr.ac.uk, or by calling us on 0300 111 5 111 (9-5pm Monday to Friday).
If you are worried about any symptoms you are experiencing it is best to talk to a medical professional. We recommend going to see a doctor first, and you can always request to see a different doctor if you prefer.
Alternatively there is a service called Admiral Nursing Direct which is run by the charity Dementia UK. Through this service you can talk to specialist dementia nurses about your concerns and they will be able to advise you and offer support. They can be contacted by phone on 0800 888 6678 or by email at helpline@dementiauk.org.
If you want to read about genes and dementia, you can view our leaflet here https://alzheimersresearchuk.org/wp-content/uploads/2016/12/Genes-and-dementia-december-2016.pdf
I would like to help in anyway possible
I would like to be considered for theses trials
I would love to volunteer for this, I’ve always had a poor memory but feel it’s getting a lot worse, my auntie has the condition.
Hi Linda,
At this current time, in the early stages of the EDoN project, data will only be collected from those already taking part in clinical dementia research. In the future, as the project progresses the aim is that there will be wider recruitment of volunteers.
If you would like to take part in current dementia research studies, there is a nationwide register called Join Dementia Research. You can find out more and register with Join Dementia Research via the website: http://www.joindementiaresearch.nihr.ac.uk, or by calling us on 0300 111 5 111 (9-5pm Monday to Friday).
If you have any concerns about your own memory it is best to discuss these with your doctor. They can test for other treatable conditions such as thyroid disorders, vitamin deficiencies, and infections can affect your memory, so it is best to rule out these causes first. If necessary they can then refer you on to specialist doctors for further memory and thinking tests.
I would also welcome being part of a trial
This sounds fabulous, any detection that can help before onset would truly be a great help! I would welcome being part of any trials. Jojo
I would like to volunteer for the trial.
Surely prevention is more important than treatment.
Your own research proves that alcohol greatly increases the risk of Alzheimer’s.
Doing my own survey I’ve come to the conclusion that not many people are aware of this – they may be in denial of course but I believe that the majority are genuinely unaware of the risk.
I think AR should be more assertive to make people more aware.
I have seen my dad go through this . I would like to volunteer if possible
Would be happy to trial any digital In strum ent.
As before
I would like to support and help in any way that is needed. What do you need me to do?
My mother suffered with vascular dementia for a number of years before she eventually passed away. I would very much like to volunteer for this research when it becomes available so that it might help others in the future too.
My mother suffered from vascular dementia which was very distressing to her and our family. I would be interested in taking part in any research that helps prevent the onset of this disease. This project looking at all aspects of our health and lifestyle is a good way forward to assessing the early signs of dementia. Thank you to all those researchers who are working so hard.
I would like to help in any way I can with this wonderful work, which has so much potential for changing people’s lives.
Alzheimers or a dementia disease runs in my family. I would like to put my name forward as a volunteer to wear a digital device to test for Alzheimers or any other dementia disease.
I would like to volunteer for any trials available please.
I would like to help in any way I can with this wonderful work, which has so much potential for changing people’s lives.
Yes I would like to volunteer as well
I would like to volunteer
I would really like to help. My Dad has had this for many years and it’s so sad. I’m also taking part in a decades long programme on breast cancer. I hope we can eradicate these awful diseases as soon as possible
I woukd like to volunteer to help with the eary detection of this terrible disease
If I can be of help as a volunteer in the research towards early detection of dementia, I would like to put my name forward.
Happy to volunteer for any trials; just lost my dad to a very aggressive form of dementia
I would like to volunteer to trial this. My mother lives with me and Alzheimer’s.
I’d also like to volunteer to help this research. I’m convinced there will be tell-tale patterns/trends/signs detectable through data analysis, long before tangible symptoms become apparent to sufferers. My mum and nan suffered with Alzheimer’s.
I would be willing to take part in a trial..
My mother currently has vascular dementia .. if I follow in her footsteps I have five years tops before I get it..
I would love to volunteer to help if possible.
Edith R
I would also like to volunteer for this trial. My Father had Alzheimers and it was hard to watch him cope.
This sounds amazing. I would be happy to help in this trial.
I would be happy to volunteer for this trial.
My mother has Alzheimer’s, she is 95 years on 16th February. Her sister also had dementia. I would willingly volunteer for this trial. I am 71 years of age.
I Would like to volunteer for the trial. My dad had it, was horrible watching him deteriorate my
mum did most of the caring, she was very independent.
My mum developed it to, I looked after her up to two weeks be for she died.
If volunteers are needed please count me in. This research and insight and valuable. Sad I couldn’t have done more for loved ones who have this disease.
Keen to volunteer. My parents both developed brain problems before they passed away .
I also would be interested in volunteering to trial one of these devices when they become available.
My husband has dementia so I know how devastating it is I would like to volunteer for the trial
I would like to volunteer. Both my parents and mother in law had diseases resulting in dementia.
As I am already diagnosed as MCI I would like to volunteer to wear one of these devises if you think it may be of use to your data bank
address verification
I would be happy to volunteer. My mother had Alzheimer’s for 15 years, before she passed away.
It was about 3 years before it was properly diagnosed. It was very distressing for all the family.
If you need volunteers to take part, please let me know, my mother unfortunately passed away through the disease, and now my elder brother is in the early stages.
Have places on the ‘wearables’ research all been filled … I am potentially 3rd gen Alzheimer’s and would like to be a subject.
Hi Laura,
Thanks you for your interest in this initiative. The first step for this research will involve ongoing studies that have already recruited participants.
We expect that there will be opportunities for new volunteers to take part a little further down the road and we will be sure to communicate these as widely as possible.
In the meantime, the best way to find out about taking part in dementia research studies is through a nationwide register called Join Dementia Research. Signing up to the register is not a commitment to take part in any particular study, it just allows researchers to make contact with potential volunteers.
You can find out more and register with Join Dementia Research via the website: http://www.joindementiaresearch.org , or by calling us on 0300 111 5 111 (9-5pm Monday to Friday). The registration process takes 10-15 minutes over the phone.
If you would like to read information about genes and dementia, you can do so here https://alzheimersresearchuk.org/wp-content/uploads/2016/12/Genes-and-dementia-december-2016.pdf
at the age of 89 years old I may be too late to offer to be part of any trial but with some memory loss and also as a retired doctor I am very interested and would be happy to be involved in any trial
I think I’m brewing Altzheimers! Therefore, I’ll take part in any serious research programmes you need.
I am happy to volunteer
I am happy to volunteer. My Mum and grandmother suffered with this awful decease.
Very keen to volunteer- with my Father, 10 years Cortical Lewis Body Disease at age 65, followed by Mother, I Year later, with Allzheimers Disease for a further 10 years
Only too keen to participate , I am now 76 and very concerned that I might have to go down the same , very distressing, route.