Early Signs (well before symptoms)?

Discussion in 'Researchers, students and professionals' started by vash, Oct 31, 2019.

  1. vash

    vash New member

    Oct 31, 2019
    #1 vash, Oct 31, 2019
    Last edited: Oct 31, 2019

    I'm a doctoral researcher at WBS, and while my research is exclusively in Finance, I'm taking part in a Datathon next week, organised and run by the Dementias Platform UK / Medical Research Council.

    I'm totally clueless about Dementia and Clinical Research in general, and during the Datathon, we will predominantly be using statistical and "machine learning" techniques to explore predictors of Dementia working with 'Big Data'.

    Despite the statistical power of the data we'll be working with, I think experience from folks directly involved with people with dementia is invaluable. And gaining an insight into this experience will help me conduct much better analysis since I'll have contexts to work with.

    With that in mind, I was hoping you could tell me about (and / or point me to research papers / evidence of) some early predictors of dementia you might be aware of?

    Content on Dementia UK and Alzheimer's Society talks about factors like memory loss, behavioural changes, hallucinations, amongst others. These appear to be symptoms of someone who already has dementia.

    Would you happen to know of / have details of attributes / changes several years before these symptoms showed up?

    I'd sincerely appreciate any thoughts / comments / resources you may be able to share.

    Thanks ever so much.

    Kind regards,

  2. Lawson58

    Lawson58 Registered User

    #2 Lawson58, Oct 31, 2019
    Last edited: Oct 31, 2019
    I do hope that you get a few replies from people on this site as your intentions are very worthwhile.

    When I look back I think there were odd little things happening that at the time I couldn't have attributed to my husband's dementia but now I am sure we're very early indications that something was wrong.

    I think at the time that most of the things that happened I thought of as being a few little eccentricities that were amusing occasionally, annoying at others.

    He sometimes ate peculiar combinations of foods eg. sardines in tomato sauce on raisin toast.

    He would repeat a story (or two or more) and often lose the point of a conversation.

    He could become very stubborn over petty or minor things such as not wanting to pick me up from work. Sometimes this stubbornness had an overlay of paranoia that became full blown in the three years before his eventual diagnosis.

    Most of the early period of the years prior to diagnosis, we were living in a foreign country (not in Europe) and trying to renovating a house. I think I decided that some of the odd things that he did were as a result from the stresses of trying to function in a foreign language while trying to deal with workmen, purchasing materials etc.

    It was also a very social time with regular gatherings of ex-pats lubricated by very cheap alcohol which no doubt masked minor memory issues and a little muddle-headedness .

    From about 2005 to 2011, it was the time of the eccentric things, the next three years were the full blooming of Paranoia which led to diagnosis. His memory didn't follow the usual pattern of dementia in that he has no memory p
  3. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    I'm v interested in the research, and in Lawson's response. i think there is a huge issue about undiagnosed cognitive impairment, which is going to be hard to track. My husband decided that he should protect his investment in our family company and first insisted on being bought out (explaining it was for entrepreneur's relief) and then kept the money, then divided everything (and then kept the family home). He divided the family wealth 50/50 and when he took my home I warned him that it would be the end of the marriage and now I have left him. I. believe that he has thrown away a 20 year marriage because he feared that he would die and leave our wealth to me and I would favour my children over his. (I would have followed any agreement we made). I agreed with every transaction (though opposing every stage) until he took the family home, and then I left. I have no defence in law (since I agreed to everything) and he would not see a doctor to explore if he is right-thinking. (after a scan showed only age-related damage). If he is suffering from cognitive impairment (as I think) how can I protect myself, protect my children, and protect him against this?
  4. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    Indecision was one of the first things I noticed. My dad seemed to have difficulty choosing what to have when we went out for lunch, he had to have what I had so I started having what I knew he would like.

    Rearranging things was another thing. Every time I visited, things had been moved around, just little nicknacks which I found strange then it became very noticeable but dad denied any knowledge of things being moved.

    The obsession with everything having to look right, plants too tall or a leaf that stuck out was quickly pruned and when we went out in the car he would always comment that trees were too tall and somebody should cut them down. This appeared strange to me because I like trees and I could not understand why dad wanted them cut down.
  5. marionq

    marionq Registered User

    Apr 24, 2013
    How strange - trees were one of my husbands obsessions. He only liked tall straight ones and thought someone should cut down any which sloped! In fact obsessions with irrelevant matters was an early sign that all was not well long before his diagnosis with Alzheimer’s. This behaviour came and went so I just put it down to getting older when he made poor decisions or unreasonable judgements.

    A really bad short term memory was the trigger which forced us to make a doctors appointment and the diagnosis of mild Alzheimer’s followed. Over the next 7 years he ticked every box in the book as a fairly classic case until he died last month once again following a pattern of broken hip and steady decline.
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Yes indeed, but often people go to the memory clinic with these sort of symptoms, but if nothing shows on a scan they are often are told that it isnt dementia..
    I am still seeking a diagnosis for my OH. Like Lawsons OH, he does not have problems with short-term memory loss - he has problems with long-term memory loss, but because he can easily pass the Mini Mental State Examination, his memory loss is dismissed. I first noticed that he could not remember pretty memorable occasions that had happened a few months previously (like the day we rolled up to a very posh and glamorous "do" with a toilet on full display in the back of our car....) I also noticed that he was having trouble with tasks that he had done for years, like working out when and how to sow seeds on the allotment and DIY tasks. He told me that he he was having trouble cooking (he used to be an excellent cook) because all the recipes were for 4 people and there was only 2 of us. He has behavioural changes and an early symptom was the way his temper became quite explosive and I was accused of controlling him, coercing him and telling him what to think . He also accused me of having affairs and developed a conviction that our daughter was not his (neither of these accusations was true), and a heightened interest in sex (although the act became yet another task that he could not remember how to do properly) leading to a sudden and uncharacteristic interest in porn and me catching him "fondling" himself in the back garden. Although he used to be a software engineer and very computor savvy he got caught on some scams and lost several thousand pounds on "deserving causes".
    All of these things have been dismissed because OH totally denies them all and says that I am making up stories about him, and he passes all the tests, so it must be me.
  7. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    I would say one of the clearest sign that 'something is wrong' is when previous idiosyncratic ways become more marked and more intense.

    I think your quest is very difficult, because the loved ones of the PWD, do notice slight differences in their loved one, but it is human nature to pretend it is not happening - just part of aging, stress, physical illness, ANYTHING but dementia. By the time clear symptoms have shown, the downward path and diagnosis are so traumatic, that the little 'niggles' of years ago, can have little or no meaning.
  8. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    I read many years ago that movement in sleep, 'acting out dreams' meant there was a MUCH higher risk of developing Parkinsons or dementia within 15 years. My husband quite often used to do this and when I'd wake him (it was annoying) would say he was dreaming.

    I also noticed it affected his driving in that he seemed to have less abiliity to judge width accurately, he'd drive a little too far from the kerb and in the crown of the road. Where cars were parked on the left he'd often stop to allow oncoming cars to pass even though there was clearly enough room for two cars.

    Another thing was he became OCDish about checks before bed, doors and cooker TV etc.
  9. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    Mid Lincs
    With my PWD it was changing the way we had always done things. For instance his job included precise paperwork so he had always been pedantic about filing bills, receipts, manuals and we used a filing cabinet. He then decided after 20yrs to change to using ring binders. Invariably over the years the binders ended up duplicated but in the beginning I didn't pay any attention to the changes, he had just retired and I thought it was borne out of boredom.
    Then it was taking 3 weeks to a job that like decorating that would normally take 3 days again being pedantic about the finish but in the end it still wasn't up to his usual standard. Now looking back I can see that 'something wasn't quite right' but it's very hard to interpret when something is wrong.
  10. Bunpoots

    Bunpoots Volunteer Host

    Apr 1, 2016
    With my dad there were 2 clear signs that something was not right but we put it down to aging to start with. The first was forgetting where he’d parked his car - leading to panic and, on one occasion, the belief that it had been stolen (we later had to apologise to the police)

    The other indicator was that dad (a highly skilled joiner and later woodwork teacher) made a set of shelves to house A4 folders and the folders were too tall. I still have the shelves but the folders have to lie down on them.

    Also car related - dad’s new car became increasingly scratched and battered and he admitted the scrape at the time but a week later was blaming someone else for them (usually me!)

    The final thing - which lead to diagnosis - was dad got lost on the way to a doctors appointment and eventually turned up late. His canny GP then called him in and phoned me to ask if I (as dad had requested) would accompany him to the appointment...
  11. chippiebites

    chippiebites Registered User

    Jun 27, 2018
    This is only with hindsight but we moved to another county in 2003 when my husband was 70. When we visited the nearby towns and cities my husband could never remember where the shops were or where the roads led, he was very disorientated. I thought it was because I usually drove and that means you do notice the surroundings more. Husband still drove locally for a while although his judgement was getting worse. He even managed to hit our house with his car when he was moving it. I put this down to his eyesight and he stopped driving because of this. He wasn't diagnosed with vascular dementia until June 2018 when he was 84, even then I didn't think there was anything more than age related issues going on. 18 months on it's a different story. I wouldn't have wanted to know the early signs, we had 15 years with no concerns, could have been 15 years of worrying.
  12. LadyA

    LadyA Registered User

    Oct 19, 2009
    Ah yes. I had a conversation with a doctor about this, shortly after my husband died. He was diagnosed in 2008. I had been absolutely sure since 2006 that he had dementia, but he refused to attend a doctor. He was totally paranoid about doctors. Convinced that they would just diagnose you with something because they were all in the pay of big pharma, and their job was to get people addicted to as many medications as possible to make money. My husband had always been a bit paranoid about things, it had been a family joke. However, by the mid/late 1990s, his paranoia was steadily increasing.

    There were also "odd" incidents, which seemed ridiculous at the time. One cold night, I woke to "smell" heat. A lot of heat. Investigating, I found he had plugged in every electric heater we had, and was running up and down the hall in his pj's repeating over and over "We're going to die! We're going to die! We'll all freeze to death!" Then there was the time he berated my then 16yr old daughter (she's now 35), for wearing pink socks. He said that only prostitutes wear pink socks, and she was wearing them to attract the attention of "all the men" we knew.

    The most telling thing, looking back, were behavioural changes. They sort of sneaked up, so very gradually, that we didn't really notice them. He was terrified (literally) of what "they" would think/say/do. He became very controlling, and bullying. He increasingly shut himself away in his study. But, these things, it was only looking back that I realised they were a sort of "creeping dementia.". It was only after he was put on anti psychotics in 2011 and all that behaviour and paranoia fell away, that I realised how far back symptoms were showing. We married in 1994. I would say by 1996/97 there were significant changes. Over ten years before he was diagnosed.

    One of the thing the doctor I talked to said was that she wondered how widespread this is, how many relationships just break down because of the changing behaviour, and so it's never noticed that something was wrong until clear dementia symptoms show, many years later. But, as she said, it would be very hard to tell, with the tests that we have available, what would be a symptom of something wrong, and what would be just bad behaviour.
  13. CWR

    CWR Registered User

    Mar 17, 2019
    My mother was diagnosed late 2016, but looking back, there had been signs for a time, but I dismissed them as being normal age-related cognitive decline. She repeated herself, seemed unsure which day it was but was still able to more or less function, altho' I had taken over a lot of the things she used to do, like collect her pension. I do recollect that there had been short episodes of her being confused but these passed. I finally realised there was a problem when I came home from work after 8 to find her dressed for church. That was the clincher. As I say, these symptoms were around about 3 years or so before the diagnosis. I hope this helps.
  14. Whisperer

    Whisperer Registered User

    Mar 27, 2017
    I have read this thread with interest and would add a few points. In doing so Vash please accept they are meant for you to consider positively, they are in no way meant as criticism of your efforts, in a field crying out for more research.
    1) When talking about signs before the Dementia condition was diagnosed or caused real concern in loved ones I think we need to remember the time line of the illness. Canary’s comment about having real problems with her OH but still no diagnosis really hits that point on the head. If a diagnosis is late then a loved one could perceive somethings to be early warning signs when in fact they were not. They were really part of the developing condition. Canary clearly has a firm grasp of the situation, but others just coming to Dementia, with no knowledge, would not see things as clearly. Is starting to repeat themselves or constant questioning a sign of the Dementia condition or a precursor. How often must it happen to move from the latter to the former. Dementia is tricky to spot until the condition really gets a hold. Normal aging versus yes there is another problem here. My mum refuses to go back to the Memory Clinic so I am left with a diagnosis of MCI. We are beyond that now but to the unknowing eye my mum can present quite well to the world. If you have been doing any caring you would soon twig something is wrong here. A diagnosis can produce many emotional reactions in a loved one, so we need to be careful we do not look back with 20/20 vision. See early clues which might in fact have other explanations.
    2) Sarakate demonstrated how matters can stand out clear and stark. Please accept my sympathy on what you have been through. I understand your line in the sand, but I guess all the time it must have been hard agreeing actions you knew were wrong, your advice ignored but ultimately carried out by a loved one. For me the only thing I could say for my mum was indecision. That said my mum is quite shy, her mother was very domineering and instilled a sense of worthlessness. Is it indecision based on early indication of a condition in the very earliest stages, or just a life long acceptance mum had to accept what others wanted? Most likely a bit of both?
    3) My major point though is for Vash. Where do you hope working with “big data” will get you? I am sure your intentions are worthy and honourable, but your academic studies todate should sound a few bells in our head. Please consider the following points. Firstly how has this data been collected? Your asking for carers to relate direct experience would imply it is not from that group in society. Data raised for one purpose then used for another runs risks. Secondly, consider the sheer level of unknown variables. Are the “early signs” looking back really that or linked to life long personality characteristics, side effects from environmental factors, other conditions now hidden behind Dementia in later years, a combination of such factors, etc.

    What will the outcomes be used for? Getting some people to go to the Memory Clinic when signs are pretty clear can be very hard in some cases. Even if you could identify early markers in behaviour is it likely to get people to go to the Memory Clinic earlier, would the medical system want them there when the drugs available can often have fairly limited impact when the symptoms are more marked. Dear Mr Jones I am telling you that you have early markers suggesting you may well get Dementia in say 5/10 years time. Please do not worry, I have no name for your condition, no treatment but yes things might (repeat might) get nasty. Not something the person or their loved one would get much from.

    one final point. Please keep plugging away. Answers only come when questions arise and individuals take them on. Please post any results your work within the group produces. To be blunt politicians turn their back, carers are frequently left with very bad circumstances to face. People like yourself coming into this site and trying to help with your efforts are very welcome.
  15. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    I read your opening post with scepticism
    1. You have a financial interest in dementia
    2. You can’t be bothered to do a proper search for research papers and have asked people struggling with day to day caring to do this for you.
    Apologies...I’ve now read your blog which I think others might find interesting https://vash.uk/dpuk-datathon-experience-series-4-of-4/ :)

    I think @Whisperer makes very valid points. For me the thought that I might get dementia is very distressing as the experience of caring for someone in a society that does not financially fund support for this is really hard. So unless you’re going to guarantee me and the rest of my family immunity I’m not interested in early testing unless there is a treatment. That fits with National Screening Committee advice on looking for any condition. Don’t do it unless there is benefit in knowing.

    If you’re looking at financial modelling for improvement in society supporting each other....I beg you to work quicker.

    If it is (as you allude to on the blog) an opportunity for you to play with data and dementia to possibly benefit from your skills I really hope there was something helpful to society from that activity.

    Early warnings....such a vast amount to consider as you found. For me it has been a long slow insidious slide with no single threshold. In fact she’s never been formally diagnosed. We’ve just reached the “it’s bloody obvious” stage. Getting cooperation with diagnosis and finding a Dr interested in helping you with this is in my experience impossible. Since everyone’s baseline varies they would need to compare to that to know if you’d got a little bit of older person’s cognitive decline and weren’t cognitively well placed to begin with vs great cognition and big decline
  16. Ruth1974

    Ruth1974 Registered User

    Dec 26, 2018
  17. Ruth1974

    Ruth1974 Registered User

    Dec 26, 2018
    My husband was diagnosed in october 2016.
    I met him in 1997 and he had literally the worst memory of anyone i knew.
    In 2002 he occasionally did odd things like refusing to take his coat off to eat dinner (we had guests over).
    In 2003 our son was born and he couldn't learn how to fit the car seat in the car or put the pram up and down. He was shown repeatedly but couldnt grasp it. Other, similar problems started to arise.
    In 2007 he started to not be able to drive in cities, he had to park on the outskirts and get a taxi.
    By 2010, every time we went on holiday i would lose him in the airport and on holiday. I had two children under 5 to look after and had to book a hotel right next to the beach so i didnt lose him.
    2011 i took him to the GP and was told there wasnt a problem.
    2013 i tool him back to the Gp after, on Christmas eve he went to pick the kids up, didn't pick them up and instead arrived home 2 hours later with all the christmas food shopping we had already bought...
    The GP referred him to psychiatry who kept telling me he was fine for another 3 years. Eventually i kept a diary, by the time he was diagnosed he wasn't bathing, was watching the same episodes of Homes under the hammer all day on a loop, wasnt changing his clothes for several weeks at a time , was using the wrong words and was driving everywhere at 20mph.
    Until i presented them with the diary, they had been testing him every three months and saying he was fine! Apparently professional people are good at doing the tests - and hes young.
  18. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    Ruth that sounds so hard for you. I think it’s tough but it’s my mum and I don’t have young children to juggle

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