1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. rainbow1709

    rainbow1709 New member

    Jul 18, 2019
    7
    Hi everyone,
    I was wondering if you ever experienced your LO becoming their old lucid selves even if for a short precious time... And I wonder if you know what might have triggered these moments? Could it be special times of day, sunlight, food, medication, showing deep emotions from your side, agreeing with them for a while even if they say the wrong things, .. ?

    I am constantly reading on dementia and I follow all clinical trials closely - I know they are failing to reverse the damage and that they claim is that brain is far too damaged for the drugs to work - but then again these lucid moments show that the brain is NOT far too gone, otherwise those lucid moments wouldn't show up.. it is more like something gets "lifted" in rare occasions, and the question is, what causes it??? Maybe if it gets discovered, better drugs can be invented.. I am asking you because you guys are the ones who know your LO day and night and will recognize those moments and maybe have an idea how they come about.
     
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,741
    Salford
    Hi Rainbow, welcome to TP
    It happens all the time, there's an man who sits in a chair staring into space and never speaking and for over 2 years I said hello and asked how he was pretty much everyday, then one day he said quite clearly "I'm very well, thank you for asking" several of the other staff witnessed it and frankly we were gobsmacked.
    I've never understood how so many of the residents can have these odd "moments of clarity" and suddenly do something you'd never have believed possible which is why I never give up on anyone no matter how bad they seem to be.
    My feeling is that there's a lot more in there but hidden behind a fog of dementia, if you ask for less you get back more, visitors sit there showing residents picture of people on a tiny mobile phone and asking if they know who it is, well yes they get no reaction and in the end they give up trying.
    The less you ask someone to task their memory the more chance you have of getting through to the level where some sort of positive response is possible.
    I don't want to sound critical but sometime I wonder how some of the visitors coped before the person went into care, they just don't seem to be able to accept what dementia in whatever form means, you can't re-educate someone out of AZ but you can coax more out of them by going slowly and trying to be at their level rather than trying to bring them back to your level.
    It's the old adage on here "you have to live in their world, because they can't live" in yours.
    Moments of clarity are very special things and you can't ever make one happen, but when they do it's worth all the effort you have to put in to get one.
    K
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,755
    Female
    Scotland
    I think you're right about the fog of dementia Kevin. If they could clear those plaques of beta amyloid I wonder if it would just be damage underneath or if the old brain cells would still function.
     
  4. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,417
    Female
    England
    I was told a longtime ago to think of the brain as the London Underground. The map of the London underground shows you how to get from A to B a thousand different ways. If a train breaks down and blocks a line then you take another route. If trains keep breaking down then there will be less and less alternative routes until there are non.

    Maybe these lucid moments are when the brain finds a way through, or maybe not. There is so much about dementia that is baffling.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    9,902
    Female
    South coast
    I agree with @jaymor
    I was told it is like driving along road trying to get to a destination and the roads are being bombed which makes them, one by one, impassible and the roads get closed. When one road gets closed you can take a detour and get to your destination using another route. Then this route will get bombed and a road closed, so you have to find yet another detour. Sometimes it might take a long time to find a route through all the damage (you might have to go from London to Brighton via Edinburgh!), but it will only work until that route inevitably gets bombed too. Eventually there will be no routes through to that destination. The lucid moments are when the brain has found a route through the damage. It might last for several weeks, or it might only be a moment.
     
  6. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    720
    Male
    Newcastle
    My wife suddenly coming out with "Lovely jubbly" at the sound of David Jason's voice (not Delboy's) is one example. I am not sure, though, if that was her becoming more like her old self or just a little bit less fog-bound, for a moment or two at least. It is easy to pick up on such positive scraps and, perhaps, read too much into them. On returning to the care home after a walk she remarked to me that we had been there before and that she liked it. But was she recognising it in the present or did it have an echo in her mind of some other real or imagined place? Moments of apparent lucidity do come but I'm not sure that they amount to much, especially when followed almost immediately by a confabulation such as "that's my gran's house over there".
     
  7. rainbow1709

    rainbow1709 New member

    Jul 18, 2019
    7
    Such beautiful and wise words dear Kevinl. I had read about it on an academic paper too - which I will try to find and post here - That if one does not constantly correct and demand answers, the resident and loved ones won't be perplexed and slowly and on rare occasions they will find a way to access some of their memories and have deep conversations.
    What I wish I'd know is what is that relaxed and lucid state, and can we help our dear ones get into that state more often. Right now as you know none of the medicine that was supposed to clear the plaques have shown to work, so the question is, is it because the damage is already too advanced, or is it that the plaques are not the issue and something else is really the cause of that fog.. (I'm a grandchild of a loved one with dementia, also a researcher trying to see what directions can lead to any kind of clue for a treatment)..
     
  8. rainbow1709

    rainbow1709 New member

    Jul 18, 2019
    7
    A couple of clinical trials that only target the plaques have failed recently for various reasons so one can wonder if there's another thing going on in the brain that should be cleared first.. I know that some researchers have also recently found some info that the plaques are also all over on the walls of the blood vessels so one thought is that the circulation is causing some of the chain reactions.. it's heartbreaking that with all the fancy tech we have in 2019, we still don't have a good understanding of this disease and no treatment..
     
  9. rainbow1709

    rainbow1709 New member

    Jul 18, 2019
    7
    That's such a good analogy and agreed. Too much unknowns and baffling events still.
    I just wish we could help LO find these "new paths" until the last moment - which is the ultimate dream and not within reach, I know -
    But when a new path appears, does it get blocked because of the amyloid beta (or tau) or is it something like blood supply or blood pressure? If we'd understand these I think we'd finally crack this disease..
     
  10. rainbow1709

    rainbow1709 New member

    Jul 18, 2019
    7
    You are right. In my conversations with my precious grandma she usually seems fine fine fine and suddenly some random thing slips in the conversation that shows that she just went off the path. I noticed that she was worse when she was in a situation that had way too many new things and was loud and crowded, but then when things calmed down she'd have more control over her memory.. or maybe this is my wishful thinking.. I hear what you say about reading too much into these moments....
     
  11. Karen22

    Karen22 Registered User

    Nov 3, 2012
    63
    My mum died due to Alzheimer's 5 years ago but, after a nap once, she suddenly came to and said "I shouldn't be like this". She then went back to sleep and woke a while later back in the fog of Alzheimer's. I believe this was a moment of clarity for her, for whatever reason. I would love to know how.
    Karen
     
  12. rainbow1709

    rainbow1709 New member

    Jul 18, 2019
    7
    Dear Karen, it must have been a rare precious gift to you and your mum, that afternoon. I hope we could learn how to make more moments like that possible for everyone.
     
  13. Emac

    Emac Registered User

    Mar 2, 2013
    172
    So I too have an interest in this topic. My Mum has had dementia for thirteen years. For the last four she has been in a care home. Probably about 18 months into her time in the home the ability to have a conversation that related to the present context had gone. Instead we got either confused silence or long rambling stories about the Mum and the wee girl and she wasn’t well and it was a shame..sometimes the story made sense but was about no one or nothing. Occasionally there were non words in there. Needing to go home to her mother was another constant refrain. She also stopped recognising first me then my sister, though she did still recognise Dad. However lo and behold about a year ago we started to notice moments of lucidity and appropriate response. If we spend say three hours with her she may manage an appropriate response three or four times. She has even become more responsive to me on my weekly visit as if she recognises me. And my name appeared in one of her stories. You could say she has got better...but that is not supposed to happen. Honestly? I don’t think science or medicine has any idea what causes dementia , in the same way that they had no idea in the past re what causes depression. It’s all theory and trial and error and as many of the theories re depression are no longer thought to be correct I suspect some of the theories re dementia may also prove to be red herrings. I do suspect that my Mum understands most of what is going on around her, it’s just that she no longer has the language to communicate most of the time..hence the stories re the Mum and the wee girl. It’s her way of connecting with us and having a “conversation”. She uses the phrase I want to go home when she is unhappy about something e.g. when she is having to sit at the dinner table with someone she doesn’t like. If she suddenly becomes restless and wants to get up and walk she needs the toilet...now that she is incontinent we can’t take her but the awareness is still there at least some of the time. Sometimes when we are struggling to get her into the car and she and I wind up in a tangle and out of puff she will start to laugh. My sister Dad and I try to include her in the conversation when we are out together. We ask her what she thinks. We explain what we are talking about we comment on the weather not really expecting an answer...but every time there are usually several appropriate responses. It’s a mystery what has caused this improvement. One day we might understand what is going on but for now I am just grateful we have had a year of a contented Mum and some moments of genuine connection. Wishing us all peace strength wisdom and love for this challenging journey xx
     
  14. rainbow1709

    rainbow1709 New member

    Jul 18, 2019
    7
    Oh dear Emac, that is such good news and I hope that your connection with your mum continues for as long as possible. I think your keeping your mum engaged in long conversations and engaged in life has certainly played a big role. You are a blessing.

    Completely agree that currently science of medicine does not understand the disease at all. One day they say it's a vascular problem (just saw today on Science Magazine that they think it's circulation problem afterall), and one day they say it's the plaques. I think we are far from knowing the real chain reactions and root cause and true mechanism..
     

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