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How can wearables revolutionise the detection of dementia?

Dr Carol Routledge

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.

75 Responses to How can wearables revolutionise the detection of dementia?

  1. Avatar
    Eileen childs 11 February 2020 at 6:33 pm #

    I think moving forward with early detection of Altzhimers is a must.

  2. Avatar
    Denise Day 11 February 2020 at 7:16 pm #

    Excellent work
    Unfortunately can not afford to give donation

  3. Avatar
    Keith McCoy 11 February 2020 at 7:34 pm #

    Are you seeking volunteers to help in this initiative? If so I would certainly like to volunteer.

    • Avatar
      Janis Duncan 11 February 2020 at 7:41 pm #

      I would like to volunteer for any trial if its possible to do so.

      • Avatar
        Sohrab Ghadimi 11 February 2020 at 8:35 pm #

        I would like to volunteer when available.

      • Avatar
        David Stantiall 12 February 2020 at 8:04 am #

        Like to volunteer if possible

        • Avatar
          David Stantiall 12 February 2020 at 8:12 am #

          Very happy to volunteer for this. Just let me know what I need to do.

          • Avatar
            Dave Harvey 27 February 2020 at 11:18 pm #

            I would like to volunteer as both my parents suffered with this terrible disease

    • Avatar
      Ruth Charles 12 February 2020 at 1:41 am #

      So would I.

    • Alzheimer's Research UK
      Alzheimer's Research UK 12 February 2020 at 9:15 am #

      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.

  4. Avatar
    Jayne Key 11 February 2020 at 7:36 pm #

    Can you have a test as my mum and grandmother suffered

    • Alzheimer's Research UK
      Alzheimer's Research UK 17 February 2020 at 3:39 pm #

      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://www.alzheimersresearchuk.org/wp-content/plugins/mof_bl_0.2.9/downloads/GEN-1118-1120%20WEB.pdf

  5. Avatar
    Sharon 11 February 2020 at 7:39 pm #

    When will the wearables be available

  6. Avatar
    Sallie 11 February 2020 at 7:40 pm #

    Is there an trial for this wearable?

    • Avatar
      Pat 12 February 2020 at 6:08 am #

      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

      • Alzheimer's Research UK
        Alzheimer's Research UK 17 February 2020 at 3:50 pm #

        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/

  7. Avatar
    Viviane Stevens 11 February 2020 at 7:42 pm #

    I would be happy to volunteer for this project too.

  8. Avatar
    Pauline herard 11 February 2020 at 7:50 pm #

    I did volunteer last year but technology wasn’t comparable to apple I phone. Is this still the case

  9. Avatar
    Paul Frostick 11 February 2020 at 7:53 pm #

    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.

    • Alzheimer's Research UK
      Alzheimer's Research UK 17 February 2020 at 3:58 pm #

      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

  10. Avatar
    Charlie Mckenzie 11 February 2020 at 7:53 pm #

    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

  11. Avatar
    Jane Seddon 11 February 2020 at 7:59 pm #

    I would also like to volunteer. I have seen both my parents come done with dementia related diseases. It is so sad.

  12. Avatar
    Jean Courtenay 11 February 2020 at 8:00 pm #

    I would be interested in volunteering

  13. Avatar
    Dr Roy Cecil 11 February 2020 at 8:04 pm #

    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.

  14. Avatar
    Maurice Shabbir 11 February 2020 at 8:05 pm #

    I certainly would like to volunteer if and when you need volunteers for this initiative.

    • Avatar
      Daisy V Ebanks 12 February 2020 at 1:02 am #

      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.

      • Alzheimer's Research UK
        Alzheimer's Research UK 17 February 2020 at 4:01 pm #

        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://www.alzheimersresearchuk.org/wp-content/uploads/2016/12/Genes-and-dementia-december-2016.pdf

  15. Avatar
    Tom Coyle 11 February 2020 at 8:05 pm #

    I would like to help in anyway possible

  16. Avatar
    Kathleen McEwan 11 February 2020 at 8:07 pm #

    I would like to be considered for theses trials

  17. Avatar
    Linda Stevens 11 February 2020 at 8:12 pm #

    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.

    • Alzheimer's Research UK
      Alzheimer's Research UK 17 February 2020 at 4:21 pm #

      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.

  18. Avatar
    Liz Landers 11 February 2020 at 8:15 pm #

    I would also welcome being part of a trial

  19. Avatar
    Jojo 11 February 2020 at 8:18 pm #

    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

  20. Avatar
    Claire L 11 February 2020 at 8:19 pm #

    I would like to volunteer for the trial.

  21. Avatar
    Lyn Williams 11 February 2020 at 8:21 pm #

    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.

  22. Avatar
    Jan Walton 11 February 2020 at 8:37 pm #

    I have seen my dad go through this . I would like to volunteer if possible

  23. Avatar
    Charlotte Caldwell 11 February 2020 at 8:38 pm #

    Would be happy to trial any digital In strum ent.

  24. Avatar
    Charlotte Caldwell 11 February 2020 at 8:40 pm #

    As before

  25. Avatar
    Valentine Young 11 February 2020 at 8:49 pm #

    I would like to support and help in any way that is needed. What do you need me to do?

    • Avatar
      Jacqueline Craig 11 February 2020 at 11:06 pm #

      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.

  26. Avatar
    Margaret Dyke 11 February 2020 at 8:54 pm #

    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.

  27. Avatar
    Barbara Blunkell 11 February 2020 at 9:09 pm #

    I would like to help in any way I can with this wonderful work, which has so much potential for changing people’s lives.

  28. Avatar
    Linda Beach 11 February 2020 at 9:11 pm #

    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.

  29. Avatar
    Stephen Clarke 11 February 2020 at 9:13 pm #

    I would like to volunteer for any trials available please.

  30. Avatar
    Barbara Blunkell 11 February 2020 at 9:18 pm #

    I would like to help in any way I can with this wonderful work, which has so much potential for changing people’s lives.

  31. Avatar
    Susan Scott 11 February 2020 at 9:18 pm #

    Yes I would like to volunteer as well

    • Avatar
      Anna-Maria Payne 11 February 2020 at 10:41 pm #

      I would like to volunteer

  32. Avatar
    Helen Webster 11 February 2020 at 9:19 pm #

    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

  33. Avatar
    Frances Bland 11 February 2020 at 9:26 pm #

    I woukd like to volunteer to help with the eary detection of this terrible disease

    • Avatar
      Sarah Drury 11 February 2020 at 10:27 pm #

      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.

  34. Avatar
    Tim Lightfoot 11 February 2020 at 9:33 pm #

    Happy to volunteer for any trials; just lost my dad to a very aggressive form of dementia

  35. Avatar
    Joanne Lee-Alliston 11 February 2020 at 10:08 pm #

    I would like to volunteer to trial this. My mother lives with me and Alzheimer’s.

  36. Avatar
    Chris Kenlay 11 February 2020 at 10:22 pm #

    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.

  37. Avatar
    Sandra Jinks 11 February 2020 at 10:22 pm #

    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..

  38. Avatar
    Edith Robson 11 February 2020 at 10:30 pm #

    I would love to volunteer to help if possible.
    Edith R

  39. Avatar
    Heather Giles 12 February 2020 at 12:25 am #

    I would also like to volunteer for this trial. My Father had Alzheimers and it was hard to watch him cope.

    • Avatar
      Sharron Hancock 12 February 2020 at 1:26 am #

      This sounds amazing. I would be happy to help in this trial.

  40. Avatar
    Alison Rogers 12 February 2020 at 12:51 am #

    I would be happy to volunteer for this trial.

  41. Avatar
    Sue Morris 12 February 2020 at 1:10 am #

    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.

  42. Avatar
    Jennifer Rowlands 12 February 2020 at 1:18 am #

    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.

  43. Avatar
    Tina Bird 12 February 2020 at 6:36 am #

    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.

  44. Avatar
    Alan Bell 12 February 2020 at 6:45 am #

    Keen to volunteer. My parents both developed brain problems before they passed away .

  45. Avatar
    Michael James 12 February 2020 at 7:17 am #

    I also would be interested in volunteering to trial one of these devices when they become available.

  46. Avatar
    Julia Evans 12 February 2020 at 8:15 am #

    My husband has dementia so I know how devastating it is I would like to volunteer for the trial

  47. Avatar
    Jane 12 February 2020 at 8:23 am #

    I would like to volunteer. Both my parents and mother in law had diseases resulting in dementia.

  48. Avatar
    robert tobin 12 February 2020 at 8:25 am #

    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

  49. Avatar
    robert tobin 12 February 2020 at 8:28 am #

    address verification

  50. Avatar
    Lynne Lyons 12 February 2020 at 8:31 am #

    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.

  51. Avatar
    Simon Cornwell 12 February 2020 at 9:17 am #

    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.

  52. Avatar
    Laura Brennan 12 February 2020 at 9:22 am #

    Have places on the ‘wearables’ research all been filled … I am potentially 3rd gen Alzheimer’s and would like to be a subject.

    • Alzheimer's Research UK
      Alzheimer's Research UK 17 February 2020 at 4:06 pm #

      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://www.alzheimersresearchuk.org/wp-content/uploads/2016/12/Genes-and-dementia-december-2016.pdf

  53. Avatar
    Dr Mary Groves 13 February 2020 at 8:24 am #

    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

  54. Avatar
    Tom Lester 13 February 2020 at 10:55 am #

    I think I’m brewing Altzheimers! Therefore, I’ll take part in any serious research programmes you need.

  55. Avatar
    Paul O'Connor 13 February 2020 at 11:02 am #

    I am happy to volunteer

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