Is a CT scan 1 year post diagnosis worth doing

Discussion in 'I care for a person with dementia' started by Fleabag155, Dec 30, 2015.

  1. Fleabag155

    Fleabag155 Registered User

    Dec 30, 2015
    Hi all, can I ask for some thoughts and advice.
    Mum is 81. She has dementia, diagnosed by the local memory clinic doc over a year ago. She has so far refused CT and MRI scans and reluctantly took Arisept for 3 days before having every side effect listed in the packet literature, and then refusing to take it or anything like it ever again.

    From reading through symptoms, she seems to have a fairly clear cut case of vascular dementia.I think we are approaching late mid stage- her conversation is unintelligible as she cannot find the words or remember the conversation, she can cope with washing and dressing, but its getting haphazard, she cannot remember how to spell her surname or what her address is. Her moods are very fluctuating, with a fair dose of paranoia and aggression, and no one in the world exists except her and what she thinks and wants. She lives alone, frequently refuses to allow the twice a day carers in, either by leaving the chain on or the key in the door, won't take her blood pressure medication, and when you take her to nthe GP with pains etc, suddenly becomes well again as soon as you get into the consulting room. Blood tests last month were clear, nothing physically wrong at all.

    We were discharged from memory clinic as they could do no more for her, but she has recently lost a lot of weight through forgetting to eat, so the GP's Practice Nurse has involved the memory clinic again.

    Today Mum had an appointment come through for a CT scan. She is very unhappy about it, and getting upset. It is also at 7pm on a Saturday night in a hospital 20 miles away, and since Mum is in bed by 6, that alone will be a big disruption for her.

    Is it worth going? We have a diagnosis already, there is no medication she can take as a result of confirmation it is vascular dementia, the scan, it seems to me, won't get us any further on. Even if there is a brain tumour or other nasty, she isn't mentally well enough for surgery, and giving her more pills for anything is useless as she won't take the pills she's already prescribed anyway. The whole thing seems a bit pointless.

    We see the memory clinic nurse again on the 5 th. Do I tell her we won't go for the scan? Is it worth 3 weeks of worried upset Mum and a late, disruptive night? Why is this scan so important? I can't see what we will gain from it, and I do see the stress making her a lot worse and she won't recover from any deterioration. Is it another tick box event for the local memory clinic funding returns rather than an investigation for the benefit of the patient? We've had quite a few of those in the last couple of years, and I've become somewhat cynical about the so called 'patient centred approach'

    Any thoughts gratefully recieved
  2. marionq

    marionq Registered User

    Apr 24, 2013
    You've really answered your own question. She won't take medication or cooperate, she's too frail for surgery if needed, she wants to go to bed early rather than trail out on a cold night to be told - what?

    I would accept her own decision to leave her be.
  3. Sue J

    Sue J Registered User

    Dec 9, 2009
    I totally agree with you and sympathise. I am in the same position with a friend who they claim is now 'new' to services reality is she had a diagnosis and no official community support for probably 15 years. They are now processing a 'new case' and no doubt part of the tick box exercise will be a scan that's if she ever is able to arrive at an appointment because they don't 'home visit'. I am told there is local funding for dementia support I have yet to see any of it in action - because they do not listen to carers and really understand dementia:( they just pretend they do:mad: sorry just had another stressed phone call today expecting Mrs Fixit to resolve, please forgive my cynicism:eek:
  4. Katrine

    Katrine Registered User

    Jan 20, 2011
    I also don't think you should attempt this. She would freak out in the scanner anyway so it would be pointless if she can't cooperate. :(
  5. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
    From what you have said I would cancel the appointment.

    I would also try and find out what triggered the request for a scan, was it the GP, or more likely, the memory clinic in tick box mode. I would explain your reservations and request them to not reschedule.

    Please do cancel and not just fail to attend, the slot can then be used for another person.
  6. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    I agree; Mum wouldn't stay still so 30 minutes travel, 30 minutes waiting, scan time, 30 minutes home they decided it was a complete waste of time as the scan was indistinguishable.
  7. Ellaroo

    Ellaroo Registered User

    Nov 16, 2015
    I agree scan would stress mum out .
    My mum who is 90 in february had a scan and it showed she had numerous blocked arteries and also shrinkage more than expected for her age . She was then told she had dual diagnosis alzeimers and vascular dementia. You would think 2 mechanisms attack acking the brain would speed up the deterioration but she has had memory problems since 2005 ! She is still continent and mobile !
    She can be rude , aggressive and periods were she wants to return to mum.
    Good luck, best wishes xxx
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I would certainly cancel, and if anyone asks for a reason, just say your mum is not remotely able to cope with it.
    I think many medics just have no idea how difficult this sort of thing can be for someone with dementia - merely the being ready on time, the travel, the parking, never mind the stress of a busy hospital when they have no idea what is going on, or why.
  9. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    This is so true, Witzend.
  10. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    I so agree. When we took Sue to A & E following her first fit, they talked very glibly about giving her a CT scan without having any idea about what this would involve for someone with advanced dementia, never mind that there would be no recent scan to compare it with in the very unlikely event that they could do a scan.

    And then there's the question of whether any information they might get would have led anywhere helpful.....

    Sue's had several different kinds of scan but the last one would probably have been more than 5 years ago and things were difficult enough then.
  11. Pegsdaughter

    Pegsdaughter Registered User

    Oct 7, 2014
    I do so agree. Mum has been booked in for an echo cardio gram which will say what we all know that at 93 plus her heart is not what it was. I think they do it just to be seen doing something and cannot just allow nature to take its course.

    Sent from my iPad using Talking Point
  12. Fleabag155

    Fleabag155 Registered User

    Dec 30, 2015
    Thank you for your comments. Mum has already been on the phone to me in a state today, so I will TELL the nurse we will not attend rather than ask her opinion. Thanks for reassuring me I am doing hte best for Mum. I don't want to upset the medics, but I sometimes feel the patient gets bypassed by 'the manual'.

    Mum was mistakenly diagnosed with aggressive lymphoma last year, and despite her mental state, the pressure we were put under to have a course of chemo was intense. No one saw her, just the proceedure.

    On a slightly different note, am I the only one getting a bit tired of various NHS departments randomly demanding Mum's presence for 'medical reviews' 'drug reviews' scans' erc etc, all of which are in hospitals a good drive away from Mums home, and which unsettle her every time - and usually seem to result in nothing positive happening? Each appointment means rearranging Mums's routine- cancelling daycare, organising new meals on wheels, chanign carer visit times etc etc. For me too, I have a husbandm a family a house and (low be it spoken) a life (I think), but I am expected to drop everything and be a taxi service, counsellor, record keeper (cos they never have the right files and never, ever read them!) whenever the whim takes them. Sorry, Getting upset by their highhandedness and rather poor attitude. Just would like to know if its me being scratchy or a general problem. Rant over.. Thanks again.
  13. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    You are right, in my opinion.
    My father is 88, frail, in a care home, but the powers that be think nothing of sending letters informing of an imminent appointment, oblivious to what this means to everyone concerned.
    We now cancel unless it is really necessary.

    So many unnecessary boxes ticked.
    So many essential boxes don't even exist.......
  14. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I cancelled one 'follow up' appt for my mother - it was following a fall when she'd been taken to A and E and wouldn't keep still for an X Ray - they thought she might have broken her nose.
    When this follow-up came up a couple of weeks later, and the CH asked whether I could take her, I wondered what on earth it was going to achieve, since she seemed none the worse. Added to which, merely getting her out of the CH and in and out of a car was going to be a major headache, she'd be agitated and distressed, never mind A and E yet again, when she was never going to keep still or even stay sitting down for anyone to examine her. Not long previously I'd had to walk her up and down A and E while a poor nurse did her best to put a dressing on a cut hand - she simply would not keep still or sit down even for a few seconds and hadn't a clue what on earth was going on.

    So I said I couldn't think what it was going to achieve, except to cause her major stress. The CH agreed, and it was cancelled.
    I do think there may often be an element of 'tick box' or 'routine' to certain appts, but presumably the medics think they are obliged to offer them, or risk being accused of neglect, or just not bothering when the patient is old and has dementia.
  15. Sue J

    Sue J Registered User

    Dec 9, 2009
    It is my experience too FB, you are not being scratchy. Where I am 90% + of staff don't seem able to see or hear what the problem is because they're too blinded by ticking boxes until of course they come across a box that doesn't match and then they try and fit a square peg in a round hole, because they must make us fit:rolleyes:, and we all know what happens then;):rolleyes::eek: Having just once more tried to get more help for my friend I was asked by the SW on the phone could they call me, I told them not unless they are ringing to tell me what help they are going to provide, I'm sick of asking for help and getting none, I haven't the energy to keep answering their questions.:(

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