“ People in the advanced stages don’t know they have dementia”…..

“People in the advanced stages don’t know they have dementia” – A blanket statement made last week by Professor Graham Stokes at the UK Dementia Congress……..

I remember taking a large intake of breathe as I was shocked at this random statement…..

Does it matter that people aren’t aware? Probably not in the grand scheme of things, but is it respectful to assume that? Me thinks not.

If people hadn’t been told, were in denial, didn’t understand before the advanced stages, I wouldn’t be surprised if it were the same for them in the late stages.

But isn’t it assuming that people in the late stages have lost all intellect? If so, how do we know that? What proof is there? How on earth could you prove such a concept?

When I saw Prof Stokes, I felt that I’d disagreed with his comments previously ….I seem to intuitively know if someone has upset me before…so I trawled through my blogs…there was my answer……

I’d attended a conference back in 2015 where the titles of many talks was around “Challenging behaviour”. He was one of the speakers. I hadn’t disagreed with everything he’d said but that emotion had obviously lingered…..I’d changed my talk that day to reverse their theory and spoke of ‘Challenging staff’……it was early days in my ‘speaking out’ and I imagine I would have been more vocal if it had been now…….

Anyway back to the current debate….some people don’t wish to acknowledge a diagnosis of dementia, which is their choice. Others simply don’t recognise the diagnosis in themselves. However, for a blanket statement to be made by a well known professor in the dementia world, without any hint of proof seems a tad ignorant to me….

After all, at what point are we considered to be in the ‘Advanced Stages’? 🤔

Some Care Home staff have said to me that some of their residents are aware. I’d be interested to know your views, especially if you care for someone in the advanced stages……

Only time will tell if people like me, who openly accept the diagnosis now, will know and acknowledge dementia in some way in the late stages, but hopefully I’ll be dead before I reach that point…

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

36 thoughts on ““ People in the advanced stages don’t know they have dementia”…..

  1. My thoughts!
    Hi Wendy, in my experience caring for my mum I have come across so many views of medics who appear to be able to express just how the person with dementia feels. From “people with dementia don’t experience pain” to ” your mum might present with distress but it’s not as acute for her as it is for you”. Really? All I can say is in the “early stages” mum knew things weren’t right. She would say “I don’t know what’s going on but I don’t like it”. Almost three years on from this mum has moved from my care to residential care and now into nursing care.She has absolutely no connection with her surroundings except she knows things are being “done to her” and she reacts by screaming, hitting out and trying to bite anything within reach including herself. It is the most horrendous situation imaginable. I don’t believe in the later stages anyone is aware of a dementia diagnosis they only experience the physicality of what is happening at that specific moment in time. If mum “knew” she had dementia would she be knocking on a wall or a table and calling for her dad? I would like to see the research proof of what is going on in the brain of a person with dementia which enables so called experts to make these sweeping and upsetting statements. My uncle, diagnosed with Parkinson’s Disease, followed by a rapid decline and then moving into nursing care still had the ability to end his life by refusing food and drink. He was told he had some elements of Lewy Body Dementia had said to me “no life” (he had almost lost his ability to speak and be heard). No way was he going to allow himself to progress further. He died 4 weeks later.

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  2. I don’t think my mum has ever known she has Alzheimer’s. I don’t think she knew what it was when first diagnosed about 10 years ago. Now she is totally unaware of her surroundings. We live in York so it’s been interesting following your blog, if I come to be diagnosed with early onset like my mum I hope I can lead as full a life as you. So thankful that you are paving the way for future generations

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  3. Dear Wendy, I am a GP caring for patients with severe to endstage dementia in a care home. They definately are aware if they are not treated with respect and kindness. They definately can make their feelings and opinions know on occasion: for instance when they want to left alone etc. I think it is incorrect for us to assume anything about what place or state of mind a person with end stage dementia is. They may not able to communicate actively, but attentive observers can learn a lot.
    I have learnt a lot from you: that you for your openess.
    Regards Jane

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  4. You are completely right Wendy; and Prof Stokes is quite wrong. I had the following conversation a week ago with my wife, eight years into Alzheimer’s with a Mental Mental Score of zero (discharged by the Memory Clinic 10 months ago) when she got upset:
    Sylvia: Don’t shove me down the stairs.
    Me: Of course not. You’re loved by me and lots of the women who come into our home and you love back.
    Sylvia: Yes, it’s just that my head isn’t working.
    Me: That’s true, but we’re alright.
    Sylvia: Yes

    Earlier this week, Sylvia had introduced herself to someone she had not seen for 8 months; and then she asked her: “How are you?” to which the friend replied: “I’m fine. How are you?” Sylvia’s reply was profoundly accurate: “Not 100%”
    The day before Sylvia had said: “We need as much happiness as we can get, because we need it.”
    How true!
    Be encouraged, Wendy, your determination not to be defeated by dementia is having an impact on many people, far more than you will ever know.
    All the best
    Bob

    Liked by 4 people

  5. Wendy, As is generally the case, I agree with you on this.

    I don’t believe we lose our knowledge, just our ability to access it.

    In the early to late stages there are times when we lose our ability, but then recover to varying degrees. In later stages, I feel sure that there are still moments of lucidity, there are many reports of clarity immediately prior to the end. In these moments, if we knew before, we must know. Maybe it would be easier if we didn’t, or maybe it no longer matters at that stage.

    Even as I write this. I know it is a philosophical argument. Who knows what we know as time goes on – maybe it is then, as it is now, some of us recognise what is happening to us, to a greater degree than others!

    I only know, that I fear not knowing, not recognising when I am slipping, because as much as I hate it, I know that whikst I can recognise it, I still know myself better than anyone else. That insight. Is a key to functioning, especially for those of us living alone.

    I wish you years of insight, and maintained functioning. These supposed “dementia experts”, do not know what it is like on the inside. They don’t even understand us now, when we are able to tell them, so there is no way they know how it is when we can no longer explain. X

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  6. I am not a Carer but four of my dear friends have Alzheimer’s. Three of them are aware, but one is not. I became aware of changes in Trish’s behaviour and habits early last year. She is now in a residential home where she seems to receive good care. However, she refuses to go out at all, and doesn’t even like leaving her room. But then for about five or six years before the apparent onset of the illness she stopped going out except for about once a month when one or other of her friends would take her for lunch and to shop. She had everything delivered and said she didn’t need to go out. We, her friends and her daugher, have tried to talk to her, to find out if there is anything we can help her do, but she turns her face away or gets very angry. I write to her, usually a pretty card – not too much for her to read! – every ten days or so as I don’t live near her. She likes to receive my cards but of course I don’t hear from her. I’m not sure if she really doesn’t know, or doesn’t want to.
    My other three friends are not so far along the road. My closest friend, Lin, was very angry to begin with. Now she tries to ignore it – in a positive way! Her son says she’s ‘gone down hill a lot recently but she still enjoys a laugh and there is still joy in the house’. Her husband is bringing her to stay for a night soon – they live far away too! – so I will be able to see for myself.
    Not a very comprehensive answer – sorry!
    You inspire me with your blog – I read them all and tell everyone about you, especially those who have some kind of association with the illness.

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  7. I think that this has to do with a person’s general attitude to life and how outward looking and humble they might be. A self-centred person might not wish to acknowledge any intellectual weakness while an outward looking person with a great sense of compassion and interest in others (such as yourself, I am guessing) will acknowledge problem areas and devise ways of dealing with them as you clearly do. More power to you, Wendy. You have sensitized me to so many aspects of dementia of which I would otherwise have not been aware.

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  8. Years ago it was considered that if you were unconscious you were unaware of things going on around you and what was being done to you. Then testimonies from people who had awoken after being in coma were publicised, proving that to be far from the truth. Those in end stage may no longer be able to make their condition, but I’m sure we are still aware of the shutting down of their bodies. I so wish that our government would be sufficiently brave to pass a euthanasia bill to enable us to elect to have our suffering ended (personal choice of course). Well done for speaking out on this xx

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  9. Hi Wendy, Isn’t it also unnecessarily negative to say ‘I hope to be dead by then’? My husband is in late stages of dementia now, at the age of 60 and has been in hospital for the past year. There have been times when I thought he had no quality of life any more, but to be honest, now he is content and happy, he smiles and laughs with the (wonderful) staff, and seems to get pleasure out of many things, including food and being around other people, even though he can no longer effectively communicate. I feel that your statement implies you think that (your) life may no longer be worth living if and when you reach that stage, but you cannot know whether you will be content, and whether you will still gain pleasure from certain things. Your statement is just as sweeping as the one from the so-called expert, and implies that nobody in the later stages of dementia can possibly have any quality of life.

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  10. A brilliant post, as always, Wendy. My mum wasn’t diagnosed till she was in the later stages, so I would say she was probably unaware that she had ‘something’ called dementia. However, and it’s a HUGE however, she was aware that something was wrong. She was very definitely aware of pain (she was severely constipated and her distress took the form of taking her clothes off because her swollen tummy made them tight. The staff seemed oblivious to her pain, just saying her disrobing was ‘part of her condition’ and was a problem to them (she was in a mixed secure unit). Thankfully she spent her final months in a wonderful Nursing Home where they went to great trouble to find the cause of her distress. Additionally, she was, as I said, aware that something was wrong – the world as she knew it was tilting on its axis and she could only express this by screaming. So, yes I would say it very definitely does matter if the patient is unaware of their dementia. It matters that they are distressed and may be unable to express that.
    PS Wendy – I hope my descriptions of her distress haven’t upset you. xx

    Liked by 1 person

  11. Of course it’s difficult to know how aware people are, as their ability to communicate their feelings may diminish. Mum came back from the appointment at which she was diagnosed with a booklet about Living with Dementia, saying ‘I don’t know why they’ve given me this’! The only time we ever mentioned the disease to her (when we were trying to explain why we needed to send her driving license back) she was outraged: ‘who says I’ve got dementia?!’. That was at an early stage – she was told but could not hold on to the information. But she knew something was amiss. Later she used to sometimes say ‘I don’t know where I am’, and would clarify that she knew her address, but obviously means something more existential that she couldn’t really articulate. I would say that sometimes, until the last month or so of her life, she knew something wasn’t right, she knew her memory was shot, and that she got confused, even if she didn’t know what was causing it. But I’m only guessing, based on the things she’d say. And her denial could of course be a reluctance to acknowledge something threatening and worrying, rather than an inability to understand. I’d rather err on the side of assuming that people with dementia know more than they can express, so we can take account of potential distress and anxiety that might come from the way they’re treated, from the things we say around them, and the decisions we make on their behalf.

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  12. Hi

    I’m a nurse and cared for a gentleman with severe dementia. He had been unable to communicate verbally for several months and required help with all his activities of daily living. One day I happened to notice him hitting his head with his fist which was unusual. I asked him if he had a headache to which he replied “yes”. I said I’d fetch some paracetamol and he replied “thank you, I’m sick and tired of having this disease”. I never heard him speak again. That one communication changed everything for me in terms of the way I care and was the spark that drove me into dementia research.

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  13. My mother was completely inactive for the last five months of her life, she had been in denial that she had dementia and eventually I couldn’t cope with caring for her as I worked full time and both siblings had died so thankfully never saw their mother with dementia. Mum was very uncommunicative but I used to visit her in the evenings after work and sit either reading to her or doing her nails and giving her a hand massage. The Christmas just before she died, my youngest grand daughter, who was three at the time, came to visit her and climbed up onto her bed. My mum was able to say her name so obviously some recognition was there, but she was never able to communicate with me. I was so thankful that she knew her great grandchild and it gave me comfort to know that although she couldn’t communicate there was some part of her brain that was still able absorb what she was seeing and what she heard and so I continued reading and talking to her.
    You are an inspiration to all people who have been diagnosed with dementia. Thank you.
    Jenny.

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  14. Hi. I am a retired GP born in Britain, living in Canada and follow your blog with keen interest and pleasure that you are speaking out. I do think that the majority of the people I have met with dementia are aware. Some may not be or choose not to make this apparent. Some may choose to some days not others…my mother in law is like this but it doesn’t make her less aware of her condition. However this is irrelevant to the respect.that all patients and families deserve regardless of their level of awareness or behaviour. People at the end of their lives should be treated with the gentleness they have earned with their lifetime experiences and we should attempt to meet them where they are at. None of the “does she take sugar” attitude of some caregivers.
    Thank you for raising this topic.

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  15. Dear Wendy, a big thank you for posting this. I’ve been working with one of my best dementia teachers who is in a very late state of the disease. If I give him time – and that’s what I always do – he is aware. He knows where he is, and who’s around.
    I love the term “challenging staff”.

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  16. Hi Wendy,
    As a Speech and Language Therapist, I frequently recite a brilliant quote to people who feel that people with late-stage dementia are unable to communicate how they feel or understand what’s happening around them…
    “Not being able to speak is not the same as having nothing to say.”
    Certainly, I have met people with ‘advanced’ dementia who have shown frustration at not being able to verbalise their feelings or express themselves, and demonstrate their awareness in lots of other ways.
    Just because a person is no longer using words doesn’t mean that we shouldn’t ‘listen’ to them.
    Another thought-provoking post Wendy, thank you for your insight.

    Liked by 1 person

  17. I can understand why this has provoked a response. I imagine in the early stages of exploring any health condition certain assumptions are made that are later debunked when better evidence is forthcoming. It is the way of scientific endeavour unfortunately. We used to believe that certain diseases sprang from what was called ‘miasma’ or bad, malodorous air and that man descended from monkeys. (Sorry, the last one’s still quite popular.😉)
    My mum had dementia and died a couple of years ago. In the early stages she knew she had it from at least the time of the diagnosis and understandably it troubled her considerably. She hoped a cure could be found or that it would just go away, but as her condition deteriorated so did talk about it if that is anything to go by? By the end, if I said as the professor that I believed mum didn’t know she had dementia I’d be making an assumption purely on the basis of how it appeared. Either way we speculate at this stage, but whether she did or didn’t wasn’t something we thought about at the time as what mattered most then was to be on hand to comfort and reassure and to see she was as comfortable as possible. As mentioned above by ‘cathannabel’, erring on the side of assuming people know more than they can express shows consideration and respect and I’m sure it’s how we’d all like to think we would be treated.

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  18. Hello Wendy, thank you for your blogs which help me to better understand what my mum, Judie, may be experiencing however is unable to always understand or express. I live in Townsville in North Queensland Australia and saw your book at the local library.

    I wish we had known earlier why mum had been disengaging from social activities and relying more on alcohol in the evenings when she lived alone. I think she must have known something was changing however was unable or did not want to talk about it, which is in keeping with her personality.

    When Judie was diagnosed with Alzheimer’s about 3 years ago she appeared to have difficulty holding onto this information however now days she does express to me feeling like “my brain is not working”. She lives in the moment which has pros and cons. Recently on a beach walk with her beloved beagle visiting for the morning at her nursing home she commented to him, “Isn’t life beaut!”. She reminds me of the importance of living each moment as well as we can as this is all we really have.

    Thank you so much for your words which help me, and mum, so much.

    Natalie x

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