1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. charlie10

    charlie10 Registered User

    Dec 20, 2018
    287
    FiL had home visit from Memory Team.....the diagnosis is no dementia, but age-related impairment plus delirium from his hospital stay (Feb) and also his hospital stay in Oct last year. She said if it was dementia it was the earliest diagnosis she'd come across i her career. He has near perfect scores on the medium complexity dementia test....anyone know if that covers all dementias or just AD?

    I was really convinced it was FTD, with his nasty remarks, sudden mood swings, sometimes furious sometimes almost childlike, lack of inhibition, inability to use remotes/microwave etc (even asked how to turn the light switch off), fabrication, often falls asleep after a few minutes and is awake/sleep randomly thro 24 hrs etc etc

    Looks as if BiL will put an extra care visit in place and that will be it because he 'hasn't got dementia' (I am pleased for him if it's right, but on the other hand it doesn't change anything, and she says she thinks he won't get any better). We're still trying to understand it....anyone with any ideas/experience?
     
  2. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,833
    Nottinghamshire
    #2 Bunpoots, Apr 18, 2019
    Last edited: Apr 18, 2019
    Both my parents managed to score very highly on those tests and they both obviously had dementia.

    The last time my dad was assessed he sailed thru all the complicated tests, to my absolute amazement. It was only when asked about the day/date/ time of year he thought it was that it became obvious just how confused he was...

    I'm afraid those tests reveal very little about how someone is really affected
     
  3. charlie10

    charlie10 Registered User

    Dec 20, 2018
    287
    thanks Bunpoots....I thought I had read of people getting high scores in these tests when they obviously had dementia....makes you wonder why they bother with them if they're so unreliable. Have been reading up on delirium v dementia....one of the differences is that delirium comes on quickly (within hours or days), dementia more gradually, and we have wondering about it for several months before the fall in Oct.....hate to keep second guessing doctors, doesn't inspire you with confidence in them, but.....
     
  4. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,459
    south-east London
    My husband scored reasonably well on the tests for about 18 months after being diagnosed with dementia. The one that showed there was something to be concerned about from the start, and which actually triggered the early diagnosis, was his inability to draw a clock face and put the numbers within it. I was stunned when I saw his attempt - a small, empty circle on one side - but with the numbers spread randomly across the paper. I'd had no idea at all that he would find that exercise hard to do.

    The consultant said that as my husband had a large vocabulary and a broad general knowledge, it would take a while before an obvious problem was detected through the other test exercises -but that the clock face test was enough to confirm that there was a dementia at play.
     
  5. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    112
    Hi charlie10
    My mum scored highly at the memory clinic in October 15, despite having obvious problems. She then had a fall 3 months later and the hospital diagnosed dementia so I'm not really sure how useful the memory clinic is. Dad was a mentally alert 85 year old who had a procedure in hospital and developed delirium within hours of the procedure. Fortunately he recovered within a few days, but as you said I always thought dementia came on gradually and delirium more quickly.
     
  6. Helly68

    Helly68 Registered User

    Mar 12, 2018
    371
    I am nor denying the importance of diagnosis, especially in kicking support services into action, I suspect for many (happy to be disagreed with) it is a case of dealing with the symptoms as they present themselves.
    Even after my Mum got a mixed dementia diagnosis, there was very little support, other than prescribing donepezil - the effects of which are debated and then we were pretty much left to it. This is an awful situation, which I deplore, but I am really not sure how much more we might have got - given that they don't know much about dementia progression.
     
  7. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    From what you describe it sounds more than just an elderly chap being very grumpy and neglecting/refusing help. However...most likely what will happen will be some crisis or other which will result in him needing 24 hour care at some point. My dad was due a test when he clearly had developing dementia over a couple of years which gathered pace over a few months but mum died suddenly before his appt came through which he never then had. His GP not mum had instigated the appt because he picked up the strain on mum when she went for an appt for a sore ankle...The shock of events accelerated his decline in a matter of weeks...we had someone from the mental health team out to do an assessment but he couldn't give any coherent answers so it was clear to them as it had been to us. GP and we agreed without hesitation that it would not be fair to put him through having a ct scan and actually I doubt we would have got resistant and verbal frightened dad to the appt let alone doing the scan. You have tried your best all the way.
     
  8. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
    It's hard when professionals take a snapshot view and make a snap decision that seems inadequate or downright wrong.

    Mum had been declining for years (I knew she had dementia but there was no diagnosis.) She ended up in hospital after a fall and took a serious downturn I was told was delirium not dementia. It may have been, but she didn't recover at all. I took the decision to move her to a CH but that was very much against the advice of the discharge team who wanted to send her home with 'a few care visits'. Mum hadn't a clue where her home was.

    I had further opposition from the DoLS team but stood my ground though it was only really settled after mum got a diagnosis about 6 months later. And despite her needing 24 hour care in a CH I had to really push to get anyone to see her. (Don't get me started on the lack of communication/joined up thinking and catalogue of errors made by consultants, hospitals, GPs and SW in the process.... :mad:)

    Can you ask for a second opinion or send a letter detailing your FiL's behaviour?
     
  9. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,032
    Female
    Chester
    I think I posted on one of your other threads that my mum sailed through the tests, even though she obviously had dementia, was no longer safe to drive was no longer capable of cooking a meal for herself, no longer understood the need to wash etc. At the point of diagnosis she could still draw a clock.

    When I questioned this I was told that the general finding is this test doesn't work well with those with a higher level of functioning initially ie degree level educated, working in a professional job, they were aware of my mum's job (she left in 1968 to have me).

    With hindsight my mum clearly had dementia which was diagnosable 4 years before diagnosis (losing things in the house or hiding them and accusing people of breaking in - I found carbon copies of numerous letters of complaint she had written to the police about not investigating these break ins - including detailed descriptions of the perpetrators, I also found some of the missing objects, although I think there were break ins and some valuable items did go) and signs of poor judgement and odd memory lapses up to another couple of years before that.

    I think the medical profession, especially the nurse sent out from the memory clinic, are often only aware of the classic alzheimers issues.

    In my mum's case at the time of diagnosis processing and understanding how to function in every day life and what needed doing was far more of an issue than her memory.

    The local police were aware of her hideous living conditions, and told me it was her choice to live like that, whereas to me that indicated some form of mental health issue, even if no dementia.

    Sadly I think you will have to await a crisis, even if your OH was in the UK I think this would be the situation. I lived 200 miles from my mum, and as she had been a hoarder all my life (I know think this was a mental illness) I never visited her house and she visited me. I wasn't aware of how things were but think that this was a blessing in disguise as I would have been powerless to do anything and just spent hours fretting about what it.

    My mum got lost on the 200 mile journey to my house, 60 miles off route, and she hadn't renewed her car insurance meant the police had to step in. I suspect she nearly drove the wrong way onto a dual carriageway as well. Thankfully this allowed me to step in but 2 years previously she had had cellulitis, refused to let the hospital contact me and was sent home in a taxi to a house which in my opinion wasn't fit for human habitation, there had clearly been some SW involvement but hostess mode has a lot to answer for. If I had been contacted then she wouldn't have gone back to her house at that point and I still can't comprehend how a vulnerable adult with limited capacity is allowed to live like that whereas if a SW found a child living in that squalor they would have been removed instantly (the police were aware of the situation in the house and were aware she had turned her electricity of 2 years previously - I wasn't).

    I know this isn't what you want to hear, but I've put it down to try and help you understand that you, your OH and probably your BIL have all done your best but the system won't let you do anymore and you just have to wait for a crisis.
     
  10. charlie10

    charlie10 Registered User

    Dec 20, 2018
    287
    thank you so much for your understanding replies everyone....I'm feeling a little bit wobbly having just spoken to OH....he's so upset. Not about us being apparently 'wrong' or that we really wish dementia upon FiL but his brother was delighted with the diagnosis....felt vindicated in saying there's nothing wrong, and seems to think everything will go back to normal now....he'll do a social visit with the fish and chips after work once a week and organise the groceries...job done. My OH is now in danger of being excluded from updates because he 'stirred it' :(

    Wish Memory lady had stuck around for a little longer to see him remove nappy to manually remove contents to put in commode....what would she have said then! OH has been caring for him for the past 3 wks....BiL has still to realise the full awfulness of nappygate!

    You've all been really supportive during this.....my husband and I (no, I'm not the Queen incognito ;)) really appreciate it, thank you :)
     
  11. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    1,227
    Essex
    Dear Charlie,

    I feel for you because when someone sails through the test and yet the relatives can see the changes it is more worrying. Dad's confusion is very obvious but the home have noticed that if he takes part in a quiz he will get all the mathematical questions correct because he was a telephone engineer and excellent at maths. If all the questions in a memory test were mathematical they would probably think that there's nothing wrong.

    MaNaAk
    Please keep us informed because I want to say you could try for a second opinion
    but I know how hard it will be to get your PWD to do this bearing the trouble I had with dad.
     
  12. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    1,227
    Essex
    MaNaAk
     
  13. charlie10

    charlie10 Registered User

    Dec 20, 2018
    287
    "Please keep us informed because I want to say you could try for a second opinion
    but I know how hard it will be to get your PWD to do this bearing the trouble I had with dad"

    thank you MaNaAk....I know we're not the only ones to have this frustration....I think we could persuade him (eventually) to get a second opinion with the help of advice from the forum, but it's BiL who is blocking and just thinks now we have been making trouble by pushing for a dementia test. He has 'control' over FiL and is the one who would have to organise anything so it won't happen, tho the toilet issues may push others (carers. DN) into some sort of action. OH is very disheartened...now desperate to get home and apparently there might be some protests at HR this weekend :eek::(
     
  14. Lawson58

    Lawson58 Registered User

    My husband had extensive testing at the memory clinic, scans etc and the diagnosis was made of AD almost five years ago. Every six months, he sees the consultant and his assistant takes him through the usual short tests. I use to question the value of repeating the same tests each time but I think what happened last time has made me change my mind..

    My husband has always performed well except for being able to reproduce the geometric drawing. I thought that he was showing some confusion and the beginnings of short memory issues and at the last visit, there was a definite change in recalling the string of words that are always given. That was a first and confirmed for us that I hadn't been imaging things, that there had been a decline in his cognitive function.
     
  15. AliceA

    AliceA Registered User

    May 27, 2016
    2,245
     
  16. AliceA

    AliceA Registered User

    May 27, 2016
    2,245
    I hope your husband has a safe journey home. Let us know he is back.
    You have done your very best.
    As others have said getting the diagnosis is not easy, my husband had a brain scan and this triggered off a diagnosis.
    This was fortunate as it helped with statutory help such as Attendance Allowance etc I am not sure it has helped much otherwise.
    One is very much on ones own sorting things out. Your brother in law will realise soon enough.
    We already had Lasting powers of attorney etc in place. I do urge people to get these in place, it is never too soon for any of us.
     
  17. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    403
    @charlie10, I hope your husband has (is having) a safe journey home. Between you the two of you have done your best to get the proper support in place for your father in law. Sorry your brother in law is being so obstructive.
     
  18. 70smand

    70smand Registered User

    Dec 4, 2011
    257
    Female
    Essex
    I really feel for you Charlie 10, Could your other half produce any video evidence of his dad to show his brother and the professionals what he is sometimes like?
    It took years for my dad with obvious memory and behavioural problems to go to the gp to be told there was nothing wrong with him and we all forget things - when he did go back a few years later a different gp referred him straight to the memory clinic and my mum was shocked at how bad he did on the test, especially the clock. And yet if you met him at the time he did a good job of keeping the conversation neutral and giving those who weren’t in the know the impression everything was ‘normal’. He was diagnosed with Alzheimer’s after a brain scan.
    Dad was in his mid 60’s when diagnosed but had obviously ( to us) had it for much longer. My grandad, 98 at the time and living alone also showed signs of dementia, yet passed the test with flying colours ( proper full on hosting mode) and I must admit his symptoms were much more intermittent.
     
  19. charlie10

    charlie10 Registered User

    Dec 20, 2018
    287
    OH is on his way to the airport, crossing fingers that the climate change mob don't prevent his flight. He's got the lpa and attendance paperwork done :) , let his GP know how he is and pushed for the Memory assessment as well as diy stuff in the house, so I'm pretty proud of what he's achieved in 3 weeks. I will show him this thread when he gets back....maybe he won't feel that he's let his dad down when he reads of your experiences.....I keep telling him he's not a miracle worker :p

    Looking forward to having him home....not least cos my car has just refused to start and is stuck on daughter's driveway! :rolleyes:

    thank you lovely people for your time and your concern....
     
  20. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    Your OH certainly hasn't let his dad down...quite the opposite and whilst it may not feel like it he has achieved a great deal while he has been in the UK he has. Getting the LPA paperwork done in itself is a huge achievement and will give his dad and the family benefit and peace of mind when it is registered. BIL will join the dementia party at some stage whether because of the reality of your FIL self neglect will suddenly become acutely obvious to him or a crisis occurs. You have both done as much as you can for the moment...safe flight back for your OH and try to enjoy the rest of Easter. Sometimes things can change dramatically quickly but as much as we want to anticipate and deal with changing circumstances before a crisis or as they happen...we cannot for reasons outside of our control do that and it does somwtimes feel like the best we can do is try to pick up the pieces. However remember it is the best that we are doing! This blasted dementia throws many curved balls. Hope your car starts for your OH always the way!:rolleyes:
     

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