1. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    Hello again everyone :). Just interested to hear anyones comments on the article in the 'Daily Mail' today on page 2 regarding the drugs being used to treat dementia symptoms. My dad is on 'sulpiride' which is an antipsychotic drug. Just lately he's not been so good and I question whether it's his alzheimers progression or possibly side effects of drugs that he is on. He is in full time care and I am going to raise it with the home as to whether the taking of medication actually gets reviewed atall or whether it's upto us!
     
  2. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    Hi Jane

    yes I read it with interest. Did you see the Panorama programme "Please look after my Dad"? It certainly raised questions with us. If you missed it - there was a previous thread on here which gave a link to watch the programme again.

    Important I guess to remember that everyone is different & reacts to drugs in different ways, but our recent experience has confirmed that medication should be reviewed regularly, so go ahead & ask & see what they say, you have nothing to lose by asking.

    Wishing you all the best

    Love

    Gill x
     
  3. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    Thanks for the reply Gill and yes i did see the programme, which was very interesting but alarming. I have an appointment with the manager of the home tomorrow so we'll see!
     
  4. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Jane,

    I agree that everyone is different and reacts to drugs in different ways - that is so important!

    We have recently reviewed dads medication and it has now been withdrawn completely. So far so good and a very positive reaction. The home have been absolutely fantastic about it and agreed to keep me posted if anything changed or needed addressing. We had a strange first week but it is hard to tell if some of the symtoms where dementia or the anti-psychotic withdrawal. Very hard to find clarity on this. Even clarity on whether there has been long term damage.

    My experience and opinion now is to work closely with the medical professionals and to question why any drug is given long term, not just anti-psychotics. Also to review medications as often as you can and don't be afraid to question every step of the way.

    Honestly, I'm not sure if we should have done this before now - dad was on a low does of quetiapine for nearly 2 years. Perhaps this was the right time, that helps me feel less guilty :(

    Please, in no way am I saying that there is never a case for using these type of medications long term, every case is different and there is no real clarity on alternatives in many circumstance. I just now believe there is no harm in questioning the people who make the decisions and at least discussing alternatives.

    Good luck with your meeting!
    Craig
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    don't go down that road of feeling guilty , its not you ! its the so called professionals .


    Well said we can all learn from this .
     
  6. Clive

    Clive Registered User

    Nov 7, 2004
    716
    I Missed the article in the Daily Mail but did see the TV programme.

    Mum was put on to Sulpiride about a year ago to calm her because she was getting aggravated, aggressive, and noisy especially at night.

    We were not happy because she lost the little interest she had had in doing things, and basically just sat in a chair and did not communicate.

    About six weeks ago we eventually convinced the Home/doctor to take mum off Sulpiride. Think she would have been left on if we had not expressed concern.

    There has not been a dramatic change but she is now taking some interest in her food again and has said one or two words again.

    It really is so difficult to know what is right and what is not. Probably it was necessary to go onto the Sulpiride to treat mum’s symptoms, but we are glad that she has been taken off it.

    Clive
     
  7. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    If my dad were in a care home situation, then I would probably ask that his Quitiapine be reduced _ I don;t particularly like him being on it.

    However, that is in a care home situation, in which there would be a number of professional staff to look after him. They would be caring for a "stranger" as it were (not a loved one) and would have the support of each other, and more importantly, have breaks away from it.

    The situation at home is quite different. We could not possibly cope 24 hours a day with dad's relentless paranoid delusions/obssessional behaviors where he would rant for literally days at a time about the "evil neighbours" and every single day would force us to go and view the new "evidence" that he had found to confirm his delusions or come up with new claims about what "they" had been up to. This became so bad that it nearly drove mum and myself into nervous breakdowns, because it would go on and on, without break.

    It sounds dreadful to say this, but we could not escape dad - there was no break from it, and it gradually ground us down. Which was his intent (he has always used this method of getting his own way - he will just relentlessly argue that he is right, and make everyone's life a misery, until we give way - for as long as I can remember)

    The drugs have not made the problem entirely disappear, but they have made it manageable.
     
  8. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    My mum is on antipsychotic medication - she has been on it for about six months and has recently had her doseage agreed.

    Although I do agree that everyone's response is different and it shouldn't be a given, we just couldn't cope with mum at all prior to this medication.

    She was so aggressive and would scream and cry for hours at a time. It was so unbearable.

    She has become more distant since the medication was increased but at least she is much calmer (although on some days she can still be terrible). However, mum's dementia is so aggressive that it's hard to know whether it is the drugs or just the inevitable progression.

    Even if it was the drugs I can't see any reason to taker her off them - how happy can she have been screaming for hours on end?
     
  9. Louise.D

    Louise.D Registered User

    Apr 13, 2007
    68
    Essex
    Hi,

    I thought that the article was rather dramatic and did not paint the full picture.

    My friends husband was on these drugs and it enabled her to care for him at home in a loving enviroment. Without these drugs he was a danger to his family and everyone else who he came in contact with.

    Some bright spark took him off the drugs without his wifes consent and he crashed, he trashed the house causing thousands of pounds worth of damage, and ended up being sectioned. He put himself in danger and the result was horrific.

    Now, he's ended up back on the drugs and he's in a care home with dementia registration as this was the final straw for his wife who had a complete breakdown.

    The programme 'Please look after my dad' was based on one persons story. Correct me if I am wrong but did the daughter not have power of attorney? She should of placed her father in a home who would of listened to her concerns and perhaps taken her dad off the drugs. She choose to leave him in an assessment centre and as a result he was ferried off to a home (not of her choice) It seemed she was so hell bent on obtaining continuing care for him that nothing else mattered. Sorry for being a b*tch but whose best interest did she have at heart.

    Everycase is different and for somepeople these drugs work and for others they don't. Alot of the time a sufferer can be calmed down with good old fashioned TLC. But then again, that takes time and we all know that takes money.
     
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    That so true it does take a lot of TLC , but then yes main issue is that it also take a lot of money .



    Then lets not forget what CraigC said
     
  11. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    I couldn't agree more with the above comments and thank you. I'm not saying these drugs are bad, for some they are the saviour between sanity and the other and i feel so much for the people who are 'caring' and coping at home for their loved one's. Two important issues are that people shouldn't be placed on these drugs as a matter of course and that people who are on them should be reviewed, the advise is, at 3 month intervals. What drug may have worked, or not worked at one time may well change as dementia is a progressive, ever changing illness.
     
  12. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    Update!

    Hi everyone, Well i had the meeting with the care home manager and discussed dad's drugs, she actually raised the subject before i did, saying we could do with a review! I went last wednesday and the doctor was also visiting that day. I had a chat with one of his carers and she actually said he was becoming more aggressive and enlightened me of some instances that i wasn't aware of! I visited dad and had an awful visit,painful, and making me acutely aware of how much this illness takes away.My sister and i find it difficult to see whether dads behaviour is down to his drugs, his surroundings or the next stage of his illness. When the doctor saw him he'd calmed down and he's not changing anything for now but would phone me on friday to discuss it, he didn't!
    Every day hurts and it's only people on here that really understand as they are there too.
     
  13. SueG

    SueG Registered User

    Jan 21, 2008
    9
    Port Talbot
    Mum is going to be prescribed a drug

    The local consultant along with the CPN made a home visit on Thursday.Afer talking to mum and seeing the state she was in he felt that he was going to try some medication. He wanted to do a few more tests then the doctor who deals with medication would prescribe something for her. Mum said that she wouldn't take it as tablets make her sick!CPN said that she was going to arrange for someone to call every day to give her the tablet and also arrange for carers twice a week. Great if Mum will let them in!
    I'm rather confused though as the other 5 doctors we've seen (never the same one twice) have said that she is not a candidate for aricept as she has vascular dementia as well as alzheimers.
    Does anyone have any idea what the medication will be and what the effect is?
     
  14. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    When dad first went onto mediaction his mental assessment score was only 14 so aricept etc wasn't an option. He was prescibed an anti psychotic to help calm him , this had to be changed to another one as it didn't suit him. He's also on an anti depresssent too.
     

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