Need advice - father has dementia symptoms, BUT medical team says he's normal...

Discussion in 'Memory concerns and seeking a diagnosis' started by rainbowcat, Oct 14, 2015.

  1. rainbowcat

    rainbowcat Registered User

    Oct 14, 2015
    Hello everyone,

    I've joined here as I am getting pretty desperate/frustrated, and I'm sorry this is going to be a bit long. For the last few years my father has been displaying signs of dementia, his GP referred him for memory tests but Dad forgot to attend (oh, the irony!). His symptoms have been worsening during the past few months, but it was only when he fell down the stairs and ended up in hospital that I've managed to pin him down (figuratively) and get him assessed. He's still in a (community) hospital as they can't discharge him to his old house because there's stairs going up to the front door (amongst other issues) and so everyone's trying to get him rehoused into a sheltered bedsit ASAP...but I have concerns.

    His symptoms are:
    * Delusions - imagines events that haven't happened or couldn't possibly happen - like nurses pouring urine over him in the night - he has been treated for a UTI a couple of times, but the delusions happen when he's not got an infection
    * Short term memory loss, including forgetting words and how to speak
    * Speech problems - as above, but also lots of slurring, stammering, burbling, drooling, and has periods of being totally incoherent. HE doesn't think he has a speech problem. A speech therapist has seen him and recommended he goes for an MRI scan (she is THE ONLY PERSON to have said this, I cheered when she told me!) and sees a dementia/Parkinsons specialist
    * Poor & reducing mobility - he has terrible trouble walking, cannot manage stairs at all now, sitting in a chair used to be uncomfortable but the physio has helped, difficulty sitting up from laying down, etc
    * Night time incontinence - approx 50% of the time he either wets the bed or pees all over the floor. They tried padding him, but he managed to rip it off, throw it across the room, and pee all over the floor and his bed. They gave up after 2 nights.
    * Mood changes - he actually spoke about ending his life the other night, that's the first time I have ever heard him say anything like that. He gets angry and aggressive, and also laughs inappropriately during a conversation
    * Spacial awareness has declined, along with the associated eyesight (being able to copy a shape the exact same size as the original - he failed this)
    * Sudden drowsiness - followed by sudden alertness. He's very tired a lot of the time, but the drowsiness kicks in sometimes in the middle of a sentence, his eyes roll and close, and he dozes for a minute or 2 before waking up again.
    * Confusion/muddled - he sometimes doesn't understand instructions or what someone is saying, he phones me 10 times a day to ask me to bring him a pee-pot (I live 4 hours away!) and doesn't remember phoning - typically the calls are him saying "help! it's urgent!", he thinks his social worker was viewing flats for him, etc
    * Tremors
    * Neglect - he wasn't taking his full amount of meds when he was at home, and without carers coming in he wouldn't have been eating or washing. As it is, his bed hadn't been changed for months.

    So he ended up in hospital after a fall, and they've been working with him to get his mobility going again (some improvement, he can actually stand and shuffle now). Now that he's "medically fit" they want rid of him, and an "independent living" (sheltered bedsit) has come up - So to try to secure this they've done loads of tests to prove to the housing officer it's suitable for his needs. One of the tests was the ACE-R. This - surprisingly - came back NORMAL. After yet another weekend of him being very confused, I decided to look this up. Found this forum plus w (this is THE official article regarding the ACE-R). I was extremely concerned to read what the cut off points are. Anything below mid-80s is considered to be "severe impairment", yet my father scored 75 - and I'd been told this was "better than most people would have got"!!

    Armed with this, I challenged the medical team about it. The dr said he had spoken to the Occupational Therapist (who had conducted the test) and in the doctor's words: "she said she thought that his score was about right for him". Horrified wasn't the word for how I felt. So I emailed all this to his social worker, his SW spoke to the OT, and the reply I got today was that "they used a different ACE-R test to the one you were looking at, there's different versions of it" ..... Disbelief, is how you can describe my emotion when I heard that.

    ARE there different versions of the ACE-R? Am I being fobbed off?

    Also when speaking to the SW, she said that a diagnosis won't make any difference, but HELLOOO! It would mean he would have access to the correct meds that will slow down the process, make symptoms more manageable, and hopefully fend off the point where he becomes completely lost in himself and needing round-the-clock care/attention.

    Thanks for reading all thise - sorry there was a bit of a rant in there, I am just so frustrated at being told he's NORMAL, when he clearly isn't. If anyone could address my concerns (particularly about being told there are different versions of the ACE-R) I would be most grateful.

    Thanks again :)
  2. Annie C

    Annie C Registered User

    Oct 14, 2015

    I'm not sure how much I can help as I'm also new here today and fairly new to AZ issues. However I can tell you that the cognitive test my father in Wales took was quite different to the test my mother-in-law in the NW took.

    Good luck sorting things out.
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Welcome to TP :)

    Will your Dad be self funding or require LA assistance?

    Depending on the type of dementia your Dad has there may be no medication suitable. My Dad has vascular dementia & isn't on any medication.
  4. rainbowcat

    rainbowcat Registered User

    Oct 14, 2015
    #4 rainbowcat, Oct 14, 2015
    Last edited: Oct 14, 2015
    Thanks :)

    I believe he self-funds some (potentially all?) of his care, costing him almost £900 a month for 3 x daily visits - this was prior to going into hospital though, so his needs may have changed. If he went into a home, he would need LA assistance for sure.

    The main thing is to get a diagnosis, because there might be meds he can take, or help he can get, or just generally be known that he has *whatever* so that any future treatment for anything else or even housing needs can have his condition taken into account.
  5. rainbowcat

    rainbowcat Registered User

    Oct 14, 2015
    Gosh. Was that the ACE-R for both? Or was it two different tests? (Cos I know there's a few, my dad first had one that I can't remember what is called, but you have to score out of 26, anything above 8 was impairment, he scored 6)
  6. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
    "ARE there different versions of the ACE-R?"

    Not of the ACE-R itself but if words are used imprecisely there are.

    A common test was the MMSE but the ownership of this changed and the new copyright owners (Elsevier) demanded a fee of 80p each time it was used. This caused many to switch to the ACE-R which was free. Elsevier then claimed that the ACE-R infringed the copyright and the test was altered.

    >>>THIS<<< is the ACE-R before the copyright spat.

    >>>THIS<<< is how to score ACE-R.

    >>>THIS<<< is the new ACE-iii

    >>>THIS <<<is how to score ACE-iii.

    There is also an older ACE before the ACE-R (R=revised)
  7. rainbowcat

    rainbowcat Registered User

    Oct 14, 2015
    Thank you for that! So according to the hospital, it's NOT the ACE-R (because that's the one I challenged them on). So if it's the ACE-iii, and he's scored 75, he's STILL showing signs of severe impairment according to the cut off data (which appears to be the same as ACE-R), yet the OT "thinks this is about right for him"?? Surely this can't be right? A cancer sufferer wouldn't be told "it's stage 3 but we'll treat you for stage 1 as we think this is about right for you", so why do they feel this is OK to downplay his memory test results?
  8. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
    You don't say what you want the outcome to be but from what you have said I imagine it may be a residential placement.

    If so I would make sure that the housing officer gets a copy of your list of symptoms together with a log of events as evidence.

    You said

    ' he actually spoke about ending his life the other night, that's the first time I have ever heard him say anything like that. He gets angry and aggressive'

    I would document this attributing events to dates,times and places, this could be construed as making him 'a vulnerable adult at risk to himself and/or others' which would mean that the LA had a legal duty of care to take steps to ensure he is adequately supervised and safe.

    I agree with the speech therapist that a brain scan should be carried out and referral to an adult movement consultant made especially as he suffers from tremors.
  9. rainbowcat

    rainbowcat Registered User

    Oct 14, 2015
    #9 rainbowcat, Oct 14, 2015
    Last edited: Oct 14, 2015
    A residential placement would be ideal, Dad's really improved overall since having 24-hour care while being in hospital (lost weight (much needed to!), COPD improved and rarely wheezes, diabetes under control, mobility a little better, clean sheets and clothes every day, even started shaving again (was clean shaved all his life until a few months ago when he just stopped and grew a long manky beard) get the picture. I am concerned that independent living with a couple of care visits per day and a cleaning lady won't be enough - but my MAIN concern is that he won't be diagnosed and I will have years of him festering in a bedsit, going rapidly downhill with everyone telling me this is NORMAL for a man of X age.

    I have been requesting an MRI scan for almost 2 years [edit - may actually be 3 years now] (from GP and now the hospital) and it took a speech therapist to nudge them that way.

    Thanks for your input, it's making things a little more clear as to what I need to do next.
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi rainbowcat
    What a pickle!
    Are you able to research care homes yourself? So that you have an alternative to set against the sheltered bedsit.
    You say that an LA contribution would be needed if he went into a home. But he was paying £900 a month himself for care in his home. Does he own his home? Does he have a pension? I ask because if he would be self-funding surely the choice of where he is settled is his & yours.

    I'm with Nitram regarding the diagnosis -
    so his own GP considers there is real reason to seek a diagnosis
    so a professional at the hospital considers tests and a referral ought to be made
    and whichever ACE test it was gives a score which raises concern
    is surely a major issue = vulnerable adult at risk

    Your list of symptoms/concerns indicates something is NOT right, to say the least. I would print off and give a copy to everyone even remotely involved in your father's case. And, as Nitram suggests log in detail every behaviour/concern from now, and backdated if you have the details.

    I am no professional but your list reminds me of my father who was first diagnosed with Alzheimer's, than also Parkinson's and now Vascular Dementia also. As others have said, there may be medication to help with Alzheimer's and with Parkinson's, but none for Vascular.

    Does your father receive Attendance Allowance - if he does and you have a copy of the application, use that as further documentary evidence.

    Are you in a position to state that you will not support your father if he is placed in the sheltered bedsit because you believe that such a placement would not be able to sufficiently support his needs. Tough I know, but they need to understand that you will NOT shoulder this burden of care. And definitely not without a proper diagnosis.

    Very best wishes

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