1. gringo

    gringo Registered User

    Feb 1, 2012
    1,189
    UK.
    All the dementia sufferers, who contribute to this forum are obviously aware of their condition, which makes their posts so very moving. But these posts are also of great importance to the rest of us, giving us an insight into how dementia affects people that otherwise we could only guess at. We are in their debt.
    But it is this question of insight which I find so puzzling. My wife has, I believe, no such insight. She will, at times, confess that her memory isn’t all that good. In actual fact it’s almost non-existent. As to all the other symptoms, cognition, orientation etc. she gives no sign of being aware that she has problems with all of these. As far as I have been able to ascertain, none of the other residents in my wife’s CC. have any insight into their condition. I suppose that anyone, who has this insight, would not need to be in a CH. But that raises questions that I have not seen addressed.
    I know it is always emphasised that each person is unique, but it seems to me there is a fundamental division between those who have an insight into their condition and those who do not. I have seen little discussion of this aspect of dementia and would appreciate hearing other's views and experience.
    I’ve been down so many blind alleys on my dementia journey, maybe this is just another.
     
  2. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,498
    Female
    Near Southampton
    This has always worried me Gringo. I am fearful that my husband was more aware if his condition than I knew but was unable to voice that awareness.
    I know my mother had clear times when she was very frightened and scared of what the future might hold. This was over 30 years ago though and Alzheimer's was a new word and there was no Society and no publicity so very little information around about it and the word dementia was not a word to be mentioned.

    So I think the fact that dementia is discussed so openly now and seems so far-reaching means that far more people know of it and that includes the sufferers themselves. So we are aware of it at a much earlier stage when previously symptoms might have been overlooked, even by doctors.
    As to why some seem not to have insight into their condition could have something to do with their brain and where the affected area is and perhaps the type of dementia involved. It could also have something to do with their personality.
     
  3. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,550
    Female
    England
    My husband was very tormented by his insight. It was a constant problem that escalated into him wanting it all to end and constantly hurting himself. He did many things that eventually saw him go into an assessment unit because of the risks to his life. Oh, how I prayed every day that he would loose this insight and believe there was nothing wrong. Seven years he was tormented by insight.

    Three years on and now he is well passed knowing anything and is calm most of the time, a much better place to be for him but heartbreaking for us his family.

    There are no winners with this dreadful disease.
     
  4. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,035
    #4 Sue J, Aug 1, 2015
    Last edited: Aug 1, 2015
    I wish at times I didn't have insight Gringo and I am most content when I have periods of not thinking about it but maybe, because of my age, I am also fighting it in the hope for things to get better, but also necessity as my situation collapses without help. When I am 'ok' my mind thinks I can do everything as I once did, it is not long before I am cruelly reminded I can't but it takes a lot longer for those from whom I seek help to 'get the picture' and therefore any adequate help to prevent its worsening or to be able to cope with the worsening.

    A recent application, done with much help - alone I could not do it -for more monetary help to increase help at home has resulted in a form telling me what I can do and what I can't leaving me thinking why do they not understand what I am saying? I am not asking for a fortune or unrealistic help but for me the difference between one or two hours care a week makes all the difference. I don't go anywhere socially, I shop on days I am able to and after a fashion, frequently coming home with things I already have or don't want:( I spend hours unable to do much at all.

    I think Saffie's point that there is opportunity to discuss dementia is very relevant where not so long ago people couldn't discuss such things. I know there is much I would like to communicate but right now am not able, time will tell if I will be ever. What I do know though is this 'dementia' me is not me at all and I want to understand as much as possible about what causes it to be so. The efforts involved in living with it though can lessen the insight and does with time and disease progress I think and is a blessing but from where I am in my early fifties, right now, I want to have my 'normal' life back please.:(

    I value very much the input of those with insight, it is some form of comfort to know that you are not alone in experiencing such things, the pre symptom me only wants others to understand the disease and keep looking for the person, despite it. I have been made acutely aware of those that are able to do this and those who aren't, the latter I steer clear of if at all possible.
     
  5. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,962
    Brixham Devon
    When my OH first became ill he told anyone who would listen that he was losing his memory; the medics all said he was suffering from stress and depression-something we hear quite often on TP. To my shame I believed his psychiatrist and told him to focus on improving his mood and that would make everything ok! Pete had such dark thoughts about what was happening he was suicidal-and at that time could remember his Mum's torment.

    Fast forward about 3 years and it was obvious to me and close friends that Pete was indeed suffering from Dementia. Still the medics were saying no he wasn't. Pete then decided to believe them:confused: Did he REALLY believe them or didn't he understand? Did he WANT to believe them because, in his mind that made everything ok? I don't know.

    From approx year 3 to nearly year 9 Pete had a few occasions when he had some insight-strangely it was always when he had had a manic episode of bi-polar (diagnosed when it was agreed that he DID have AD). I found those occasions extremely distressing for both of us and I was glad(!) that they were fleeting moments.

    Mike, I have no answers. It's all too heartbreaking to think about. Insight may mean that the sufferer is not so far advanced-it may mean that the part of the brain that allows insight has not been as badly affected as others but other parts have taken the brunt of the brain damage.

    Yes! Dementia is such a puzzle when there is no recognised route as the disease progresses-as you say there are a lot of blind alleys. Unfortunately, in trying to negotiate the dead ends we end up tying ourselves in knots.

    Love

    Lyn T XX
     
  6. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    From my experience with my mum and I'm going back just 20 years when I had no knowledge and little understanding it was never discussed,but she knew and understood . I now know she had researched and was fully aware of the path she would be taking. Unfortunately it was never discussed. But she knew. Today I think I have some knowledge and some understanding but do I really ? I'm not the one going through it. My husband and I have conversations about how he feels, how his memory is etc .Then he suddenly says I've had enough now and conversation on the subjects closed. He never would allude to it to our children or a third party but he knows.
     
  7. blueboy

    blueboy Registered User

    Feb 21, 2015
    125
    My Mum's parents both had dementia, one Alzheimers and one Vascular so she should know lots about it - but - she doesn't seem to realise that she herself now has dementia despite no short term memory, incontinence etc etc. I think it must be that some people have a part of the brain damaged (thank goodness) which allows them to remain unaware of their condition. Whereas, my grandfather (Vascular) often had brief lucid spells during which he would angrily lament his state - heartbreaking to hear.
     
  8. Blogg

    Blogg Registered User

    Jul 24, 2014
    64
    My dad certainly had insight into his dementia, he had lewy body dementia and one of the features of LBD is fluctuating cognition. The day before he died he was able to voice his concerns about what his future held, heartbreaking for him and us. He was also able to articulate that he was losing the ability to drink and swallow, it's horrific actually that he was so aware. He was in a nursing home receiving CHC funding, I know one of the nurses thought he wasn't ill enough to be there because he was still able to communicate with us. He was utterly traumatised by his delusions, yet was obvioulsy unable to realise that they weren't real. Awful disease.
     
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,914
    Female
    Dundee
    As far as I know my husband has no longer any insight into his dementia. I say as far as I know as he can no longer hold any kind of conversation with me or express even basic feelings - like too warm, too cold. I find it really difficult. To look at Bill you would not think he had dementia, you would not think he is almost 85. He can sing songs - he joins in when I sing to him, he can read and follow and sing songs at our choir.

    Having said all of this he can do very little for himself now and needs 24/7 care and support. When he does speak to me it is more often than not in 'gobbledygook'. Mostly he doesn't really know the difference between 'yes' and 'no'. Having said all of that he will sometimes come out with a sentence which is complex and correct in terms of context. It does worry me that he can understand more than he can express and that he has insight which upsets or worries him.
     
  10. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    My husband has insight and gets very frustrated with himself and the dementia. He has early onset AD and Vascular. His executive function is affected which means he understands everything but can't execute or with great difficulty . All his spelling is gone and tasking is extremely difficult . I wish he wasn't that aware at times.


    Sent from my iPhone using Talking Point
     
  11. maryw

    maryw Registered User

    Nov 16, 2008
    3,805
    Surrey
    I had a very interesting conversation with my husband tonight re his forthcoming final visit for cognitive assessment (research project at major teaching hospital) following his stroke 2 years ago and diagnosis of established small vessel disease, which may lead to vascular dementia. We had had a glass of wine each, which helped. I asked if he had noticed any major change and he said he had problems remembering street names and people's names. I said the most major change I had noticed was mood change. Only last night he shouted at the top of his voice at the dog for asking to go out when we had sat down for a meal. It was wild and irrational. I didn't mention the incident, but he did and said it was like he had no control how he reacted ...... I said this was the most difficult part for me as he had always been so easy going but I did realise it wasn't him but was a result of his illness and I understood. I'm glad we had that conversation; he normally shuns conversation now other than any involving his hobbies (cycling). So he has insight into realising he has no control over his mood swings ..... That must be awful to live with.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,786
    Female
    South coast
    Mum has no insight into her dementia. She has never acknowledged that she has problems and if you mention about her general health it is obvious that she has also forgotten about her other health problems which she has had for years. She will say proudly - Oh I keep myself very fit, there is nothing wrong with me.

    Apart from her Alz, she has high BP, atrial fibrillation, heart failure. kidney failure, glaucoma and can no longer walk more than a few steps (I take her out in a wheelchair).
     
  13. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,035
    It is awful to live with Mary but am sure it helped being able to tell you about it and your understanding. I tell my close friends and they too are understanding and that helps me immensely.

    I had conversation today with my elderly friend with dementia, we discussed an outburst where she got upset with someone irrationally, I understand because of my own symptoms and was able to readjust her view for that moment, she realised that and knew I understood because she said no one can really understand it unless they experience it and also said, I understand you more now too. Yes, there will be many other moments of misunderstanding but it's the moments of connection that gets us through.
     
  14. Lawson58

    Lawson58 Registered User

    This is such an interesting threads and I thank you for posting it.

    I wonder where the connection is between having insight into your condition and acceptance and acknowledgment that you actually do have Alzheimer's.

    After all, many AD patients are in complete denial about their illness but will be quite forthcoming about their other health problems. Loss of cognitive functioning must have an impact on anyone's ability to process, comprehend and analyse what is happening but maybe if you just pretend that nothing is wrong, it will all just go away. To have insight as an AD patient must be a dreadfully painful experience and it would be a normal and human reaction to avoid the pain, to protect oneself from that by hiding it not only from others but yourself as well.

    OH is almost 76 years old, has major cardiac issues along with his AD. Not only is he in total denial about AD but refuses to accept that he could possibly die within the next year or so. In spite of having had a cardiac arrest about 20 months ago, I have never been able to discuss things like DNR, what he would prefer in the way of care as he approaches end of life etc. And I think that he is resorting to denial as a way of dealing with the fear. This suggests to me that that there is a degree of insight but it is easier to cope if gets buried as far down as he can push it.

    For those who have AD and post here, I salute your courage - for acknowledging that you have the disease, for so bravely posting here and for your the tenacity and endurance you demonstrate in your constant battle with AD.
     
  15. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,035
    Thank you for posting this Lyn as it has helped me. I, like Pete told those close to me I was losing my memory and things weren't functioning 'right', I did so in the hope that I would be supported and helped, unfortunately I wasn't helped, and not all due to the way I was presenting. I knew there was /is something wrong in my brain function and want/wanted to help the professionals to help me by sharing my insights with them at the same time as trying to cope with not losing my home amongst other things. It has made me realise how much is not understood or is misunderstood about these conditions and how trial and error with different ideas/suggestions is part of the package to find a way forward. Continuity of immediate carers is vital and an understanding of the early life and subsequent life experiences of the sufferer as these will enable understanding of behaviours that seem 'out of place' or irrational.

    Whilst those around me, health care professionals & DWP officials try and 'process' me in whatever way they think best I am trying to come to terms with the most devastating life event to befall me ( I thought I'd had my share;)). I live with the symptoms, I have some understanding of the 'treatments', I still want to have a say, I try to help others understand. How can they tell me what's best for me? They have no idea and I'd appreciate that honesty then together we can find a way forward. Without that honesty I feel on my own with it, with the exception of the support of TP.

    It is as Lawson describes, but it is not part of who I am to shy away from painful realities, well not all of the time.;)
     

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