Do we tell our Aunt that she has the early stages of dementia ?

Discussion in 'I care for a person with dementia' started by Avocet, Nov 6, 2015.

  1. Avocet

    Avocet Registered User

    Nov 6, 2015

    Our Aunt has just been diagnosed with the early stages of dementia. Up until now she has known that she has memory problems and that the doctors are trying to find out why. She has additional support at home from carers, which has recently started.

    Our dilemma is whether we tell her or not. She is very medically aware as she has been a midwife all of her working life, but she does suffer with depression at times, so we are not sure what to do.

    We know there is no easy answer but would appreciate some feedback.

    Many thanks
  2. optocarol

    optocarol Registered User

    Nov 23, 2011
    Auckland, New Zealand
    Difficult - I'd be thinking if she's been a midwife, she would want to know. I'm not medically trained, but because of optometry training (and personality) I am the kind of person who wants to know this sort of thing. On the other hand, you're concerned about the depression. If she's concerned about her memory loss, then it seems likely she'd rather have an explanation than be left in the dark.
    My only experience is with OH, who is not medically aware, thinks he's fine even in severe stage and so I've given up trying to explain quite a while ago.
    Sorry, this doesn't seem much help. Hope you get more help from others as I'm sure you will.
  3. marionq

    marionq Registered User

    Apr 24, 2013
    If she's medically trained she probably already knows. I would be looking for an open and honest approach to draw her attention to those drugs which can slow down the rate of progress of the disease. She might be open to getting involved in those activities which improve wellbeing such as Singing for the Brain. If she is willing to work with the Alzheimer Society she might be a valuable asset to talk about how it affects her.

    Appeal to her educated self it might work.
  4. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    Why does she need to know? What purpose would it serve? If in doubt, do nothing, imo.

    My dad became suicidally depressed when he realised what was happening to my mum. She was actually fast-tracked and put on Aricept as part of Dad's treatment plan by his psychiatrist.

    I never told Mum she had Alzheimer's or dementia in case it triggered a similar reaction in her. My family know I would not want to be told either. You can't 'untell ' if any damage is done.
  5. Beate

    Beate Registered User

    May 21, 2014
    I would tell her once as she has a right to know, but depending on her reaction, I would let it lie there. If she forgets about it or for whatever reason never mentions it again, I wouldn't either. It would be unkind to constantly remind someone of their problems.
  6. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    In my opinion I wouldn't tell her. Letting her know that she has memory problems seems to be enough to take in-especially as she suffers from depression. My Husband's consultant advised NOT to tell my Husband as he also had depression/anxiety-we were worried what he would do.

    It IS very difficult. Do you think the memory clinic would give you some advice?

    Take care

    Lyn T
  7. beverrino

    beverrino Registered User

    Jan 12, 2015
    my mum was told at the memory clinic that she had Alzheimers. She was asked if she knew what is was and she said 'its what old people get' - in a very matter of fact way. It wasn't a shock to us as my sister and I both strongly suspected it. Mum had forgotten all about the visit, moments after leaving the hospital where the clinic was held. In the early days she used to ask 'why am I like this?' and I used to tell her she had Alzheimers and explain about it and the need to take her tablets - she always listened very intently and never seemed distressed by it.
    Now when she asks me - I just say 'you just have a problem with your memory, this is why its important for you to take your tablets'.
    When she asks me if she will get better I say 'Yes you are just having a bad day' but her memory is so bad she has forgotten every conversation as soon as it ends.
    In my opinion, you need to assess what impact what you say will have on the person and tailor your answers with 'love lies' if need be.
    Everyone is different
  8. RedLou

    RedLou Registered User

    Jul 30, 2014
    I'm a bit thrown by the black and white responses to the question. Have confidence in your own judgement. You know this woman - we do not. Is there a way you can ask her a few questions? 'Have the doctors told you much?' (even if you know the response) 'What do you want to know?' and with your own long and fond knowledge of your aunt you will get a steer what to do. --Just be aware there is often no right and wrong answer with dementia. You are often left thinking - should I not have done that? should I have done something else? Truth is, sometimes no way is right and anything you do does not relieve anxiety or lighten mood. All you can do is your best. Keep to that mantra and take comfort from it, even when it seems your best hasn't helped.
  9. marionq

    marionq Registered User

    Apr 24, 2013
    What an interesting thread this has become. I dare say each answer is a reflection of ourselves and how we dealt with things in our own family. Of course you must be the judge Avocet as you know your aunt best. Now at least you know there are numerous approaches.
  10. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    My mother was told she has a memory problem. Just it.

    I am depressed. If I had a dementia diagnosis on early stage, I would want to know. And probably I would want to decide which CH, when use DNS, who has POA. I would want to decide what I want to do on my early stage. ( I remember a movie of glen Campbell)

    Maybe before telling me, my Psychologist should increase my antidepressive pill to avoid suicide.
  11. looviloo

    looviloo Registered User

    May 3, 2015
    Difficult one. My dad had his dementia diagnosis explained to him by the psychiatrist, and by the mental health nurse on two or three occasions. But his dementia (vascular) means that he has trouble retaining this information, so I just don't mention it at all anymore, even when he asks questions. It didn't distress him at all, which I found strange, but again this could be a symptom of his dementia.

    I think I would do as others have suggested; broach the subject very carefully (or only if she asks), perhaps refer to it as a 'memory problem' without using the word dementia, and see what her reaction is. Let her lead you, follow her cues...
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    People are so different that it is hard to tell. My mother had memory loss and my husband had terminal cancer and I never actually told either of them - I knew my husband didn't want to know because we had had several conversations about his father giving up when he knew and we have teenagers so I didn't want him to give up lol!! My mother was a professional woman, fiercely independent and determined and I knew that she was probably better off not being faced with it and just allowed to decline with dignity - although she did exactly that it was a pretty rocky road.
    I'm quite pro not telling but I really agree that some people want to put their affairs in order. I would be inclined to encourage her to put her affairs in order without being too specific about the diagnosis. If she is offered drugs then she will know anyway and then it would be good to give her to room to discuss everything whenever she wants to and not keep an elephant in the room.

    Good luck I am sure you will find the right path for you and for her xxxx
  13. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    #13 CollegeGirl, Nov 6, 2015
    Last edited: Nov 6, 2015
    My dad chose not to tell my mam because he knew she'd be devastated. I understand this completely. However, it made things extremely difficult for everyone else because it was impossible to speak about anything in front of her. We had to speak in code for a long time.

    It's a very hard decision.
  14. Rodelinda

    Rodelinda Registered User

    Jun 15, 2015
    It must depend on the individual and how well you know them and the state of your relationship. My mother was told by the specialist nurse at her first visit that she had dementia, then after a scan was told it was vascular dementia. But she forgot, both times, almost instantly. She sometimes recognises that her memory isn't good. She lives with me and knowing her I can't see the point of continually telling her that she has dementia. We can't do anything about it and I am learning to cope with the lack of memory and allied problems. I probably would tell her if she asked outright but she doesn't. Not sure if this helps.
  15. 1mindy

    1mindy Registered User

    Jul 21, 2015
    When dad was very poorly in hospital with cancer. The specialist said he most probably knows and had known for some time.Unless he asks don't tell him. I would say the same here. She most probably knows.
  16. Beetroot

    Beetroot Registered User

    Aug 19, 2015
    My mother was told by the psychiatrist who diagnosed her. He came straight out with it said it in a very matter of fact way. It rather shook her.
  17. Earthangel

    Earthangel Registered User

    Feb 8, 2014
    South Yorkshire
    I would wait and see if she asks you. I kept telling my mum, but didn't take it at all well. However, I decided to go down the route of your blood isn't pumping around your body too well. She is OK with that, doesn't think she has Dementia - such a stigma.
  18. little shettie

    little shettie Registered User

    Nov 10, 2009
    My mum was told after her head scan that she had AZ. She just sat there as the consultant explained everything and that he was starting her on some medication. When we came outside mum said he was a nice man wasn't he! Completely wiped it from her memory, whether on purpose or not. If Az was mentioned in her presence, she would go ballistic, shouting and getting really stressed. It was horrific so we all had to walk on eggshells around her. That was 6 years ago. In that time I found dealing with other doctors, Gps and health care professionals a bit of a nightmare in that they would just talk about AZ in front of mum, whether it was the right thing to do or not. Never asked if they could, just assumed and mum would always get so agitated and upset. It drove me insane, I dreaded appointments. Now I always take a letter in and hand it to the person we're seeing telling them not to mention the words AZ in front of mum. It does work thank god. Mind you, mum does know she has a problem with her memory and when she asks me why she can't remember I just say, well mum your memory doesn't work as well as it used to, that's why you take those 2 tablets to help. And Aricept has really worked well for her I'm pleased to say. But she is so anti meds that she tries hard not to take them. If I don't watch her like a hawk shes like Paul Daniels, the tablets are out of her mouth, on the floor or in her pocket!! Hey presto! Lol x
  19. Avocet

    Avocet Registered User

    Nov 6, 2015
    Thank you so much

    Thank you so much to everybody that has responded to our question.

    As we knew, there is no easy answer but it is a great help to hear of others experiences, good and bad.

    So far the GP and other doctor involved have not directly discussed it with her and have been very supportive, as have her carers.

    We think she may well realise that there is something causing the memory loss, but we have decided to broach the subject when she wants to, rather than tell her outright.

    Thank you again.
  20. 1mindy

    1mindy Registered User

    Jul 21, 2015
    Good decision, it may save much anguish for her and you.

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