1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    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. Liz54

    Liz54 Registered User

    Jul 16, 2007
    10
    Sheffield
    My mother has just been in a residential home for two years and has been on various anxiety relieving drugs and tranquillisers. One was Zuclopenthixol. I questioned this many times but was always told the doctor knew best.
    She was a little aggressive when she first went in the home, but the only real problem she can cause is that she can scream or squeal if someone tries to get her to do something she doesn't want. If they explain things to her, all is well.
    The result of the drugs was that she was almost always asleep when I visited and stopped talking, her hands shook, they didn't bother to wake her for food and drinks, and when she became dehydrated, they sent her to hospital and refused to have her back.
    In hospital, she soon came round and was completely different. The nurses loved her, she talked, told everyone she loved them, and she never stopped eating and drinking. One weekend when they were short staffed, they gave all the patients Lorazepam, and my mother was just the same as before, sleepy, wouldn't eat, shaking etc.
    Now she has gone into a nursing home. We discussed what had happened with being drugged up before she went in. I have been visiting every other day, and most days she is fine, except once when she had been given a drug for aggitation (not sure what yet) and again the effects were the same.

    Doctors don't seem to know what to prescribe, some of these drugs sound dangerous. In the residential home the staff seemed to came more about a quite life for themselves. Should relatives get a say in what is given, is there any particular drugs that have proved useful for anxiety or mild aggression ?
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,672
    Kent
    Hello Liz, welcome to TP.

    I find your post quite disturbing, as the thought of nurses sedating patients because they are short staffed, is totally against the ethic of nursing.

    The same goes for your concerns that your mother`s life has been unnecessarily controlled by over prescription of drugs.

    If you have proof of these complaints I suggest you put them in writing and make the complaint official.

    I`m sorry for being so blunt, but we must do everything we can to make sure our most vulnerable people get the best care.
     
  3. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    #3 CraigC, Jul 16, 2007
    Last edited: Jul 17, 2007
    Liz,

    I have real mixed emotions about drugs used to help with some of the challenging behaviour that surfaces with Alzheimer’s.

    On the one hand it seems to help manage the challenging behaviour and more importantly the anxiety of person who has dementia. On the other hand there are the side effects that you discussed including sleepiness and loss of appetite.

    My experience with these drugs is just through my father who has Alzheimer’s. I watched my father last year with severe agitation and confusion almost destroying himself from within, he was frustrated and pained particularly with important personal care. Dad was prescribed a few drugs and is now on a low dose of quetiapine. He is not anxious now BUT the big down side is that he is very sleepy and not 'with it' a lot of the time. How much of that is the quetiapine and how much the illness itself I do not know.

    I'm wrapped up in guilt that he is on these drugs and as time goes on almost forget how he was before he was on the drug.

    That said, I really don't think it is the case that any of the homes have popped dad on these tablets lightly. I've been consulted and had the opportunity to discuss the situations. This doesn't seem to have happened in you case and I would be a little more upset - as sylvia has said, if you have not be consulted you have every right to make a complaint.

    My advice would be to get qualified medical advice from as many people as you can GP; mental health nurses, etc etc. You can also get an independent assessment and find out if there may be other effective or combined treatments. The other important thing (in my humble opinion) is to reassess the medication situation regularly. It is not difficult for a GP to change the dose slightly and the staff and yourself can carefully monitor the any changes.

    You are absolutely right to be wary of the use of strong tranquillizers BUT I really don't think that a good care home would use these just to make their life easy. These drugs can help can manage a situation and make a person more comfortable.

    I'm talking from a personal viewpoint here by the way. The Alzheimer’s society has a strong view against the use neuroleptics. It is a good moral stance, but we as carer's have to live with the guilt and society is a long way off funding the personal care required if these symptoms can not be controlled, at least in some way, by medication.

    Just my humble thoughts
    Craig
     
  4. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Liz54,

    This is a very difficult area which Craig's post has summarised wonderfully.

    The Alzheimer's Society has a fact sheet on this that you might want to look at:

    http://www.alzheimers.org.uk/Caring_for_someone_with_dementia/Unusual_behaviour/advice_drugsbehaviour.htm

    There is also some information on this regarding the Society's campaign to reduce the overprescription of neuroleptic drugs and to increase standards of care and training for care staff:

    http://www.alzheimers.org.uk/News_and_Campaigns/Campaigning/neuroleptics.htm

    As far as doctors not knowing what to prescribe, there is probably some variation between GP's who may see more or less of these problems. Also, individual reactions to drugs can vary wildly.

    Take care,

    Sandy
     
  5. j.j

    j.j Registered User

    Jan 8, 2007
    91
    hi liz
    i also feel vey strongly about drugs, my mam went into a home 5 months ago and was given lorazapan as needed for agitation, i was always vigilant about what was prescribed and always asked every day what she had been given, i got used to the idea she needed the lorazapan but then she wouldnt sleep and was prescribed temazapan as well, then she was still agitated so was prescribed olanzapine on top of the other two, they all mounted up and she became very drowsy and is now in hospital where she has been prescribed risperidone for the agitation and zoplicain?spelling) for sleep. it is so hard isnt it to know wether it is bieng done right, reading your post it sounds as if your mam shines through when not on the drugs and seems unfair if it only for isolated bouts of agitation.
    x j.j
     
  6. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    To Liz

    Hi Liz,

    I have no experience of this, so my reply is probably a waste of time. My mum is a problem in other ways, but does not need sedating, and I have to say sedation does seem to frighten me. If she ever did neet sedating, I would want it discussed with my fully beforehand and would want to know how long it would last.

    I think you should ask some questions, and get answers. But do remember, you have done your best, you have been guided by those whom you thought had more knowledge than you , and that is reasonable.

    Just do what you can to find out.

    Love

    Margaret
     
  7. Liz54

    Liz54 Registered User

    Jul 16, 2007
    10
    Sheffield
    Thank you all for your comments and suggestions. It is good to have someone to talk to.
    I always felt intimidated by the Residential Home staff. They made me feel like I had no say in anything, and with no experience in these matters, it was hard to question them. And of course, until my mother was sent to hospital, I had no idea how well she would respond to coming off these drugs.
    I feel disgusted in the way the Residential home sent her to hospital and then refused to have her back. The hospital quickly re-hydrated my mother and discussed the situation with me, rang the home to say they were keeping her in for the weekend, and the home manager said "We aren't having her back". When I questioned this the manager said what she had said was "it's too soon, we will assess her in three weeks", but the next day I was sent refunds of my mothers fees and a letter saying she had left the home.

    Now she is in a nursing home I feel more confident of discussing things, and of course, this forum gives me more confidence to do that. Thanks again.
     
  8. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Liz,

    It sounds like you are lucky to have you mother in a different home now and hopefully the staff at the new home will be more respectful and understanding. My experience is that most homes are grateful for relatives and friends who get involved in any way.

    I really hope things improve for you both and we are all here to help in anyway we can.

    Kindest Regards
    Craig
     
  9. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    The medication worries me as well. My husband is also on quetiapine low dose went very sleepy as well but now sleeps during the day and is awake all night. They thought it was the seizure drug he was on so reduced that without talking to me first. Hence he started taking his myoclonic jerks again and 4 seizures. If they had spoke to me before they done this i could have told them he would be at risk. The Quetiapine was never stopped just to see. The problem seems to be we aren't supposed to know anything about medication.
     
  10. Liz54

    Liz54 Registered User

    Jul 16, 2007
    10
    Sheffield
    The latest news is that I have had a word with the senior nurse in my mother's nursing home. Firstly, she was horrified that my mother had been kept on Zuclopenthixol in the Residential home. She said that this was one of the worst major tranquillisers and is a psychotic drug.
    My mother is now on Promazine Syrup, and although this is also listed as a major tranquilliser, I am told that it is nowhere near as powerful as Zuclopenthixol. Although how anyone knows this, I am not sure. The nurse promised me that they will try and bring the dose down, and I have a right to see the doctor to discuss this..... but to give it six weeks as he won't have the notes yet.
    The nursing home are currently just administering the drugs that were listed by the hospital .....but I am sure Promazine wasn't listed on my mothers drugs when she was in hospital.

    Anyway, at the moment my mother is a bit sleepy, but not as bad as previoulsy, and she has some minor side effects, a bit of shaking in one arm, scratching, sore eyes, and blotchy skin, all of which were much better when she was in hospital.

    On another topic completely, when I visited yesterday my mother was in a wheelchair, which she hates. The auxillery I asked said she was still in it because it was too far to walk from the bedroom to the dining room. I pointed out the need to keep my mother using her legs, and was more or less told to suit myself, so, I got my mother out of the wheelchair and easily walked her to her bedroom. When another staff member came to help me, my mother shouted out "Don't hit me". Very worrying. She usually repeats the same little sayings (don't do that, you are nice etc). I have never heard her say this before !
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,672
    Kent
    Hi Liz,

    When my grandmother was in a NH, she struggled with a zimmer frame, especially when she needed to go to the toilet.

    She begged for a wheelchair, and I asked about one, but was told she must keep with the zimmer as long as possible, because as soon as she was in a wheelchair, she would lose muscle tone.

    Different homes, different attitudes.
     
  12. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Liz, did you observe any reaction on the face of that staff member (Shock, embarrassment etc.) or did she say anything in response?
     
  13. Liz54

    Liz54 Registered User

    Jul 16, 2007
    10
    Sheffield
    No Lynne, I don't really think that this has actually happened (having slept on it for a few days). But while most of the staff are nice, this one person seems to have an attitude - she obvioulsy hates her jobs. I will be watching her.
    One problem is that the other 14 or so dementia patients on my mother's wing don't seem to have visitors, which makes me feel a bit awkward - almost like a pest. Was certainly a better atmosphere today with two decent staff members working. In fact, everyone was lively instead of asleep. Maybe because they had the radio on instead of a silent television.
     
  14. Daisy123

    Daisy123 Registered User

    Jul 15, 2007
    10
    village nr Swansea
    When my mum went onto another stage and started "escaping" and hitting me with whatever she could reach, I phoned her psychiatrist for advice. Without seeing her, the doctor issued a prescription for Lorazapan, which certainly cured the problem as mum could hardly get out of the settee after that. She was only on half of one tiny tablet twice a day but the effect was frightening at first. I must admit that I probably shouldn't be playing God but I stopped giving them to her after about 10 days and her behaviour has not become "quite" as bad since. But these little pills are such strong stuff.
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    How do you do that Craig , Meaning who is the independent assessment from ?
     
  16. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Just noticed this unanswered question when running a search for another poster. Sorry Margarita, hopefully you will forgive me for the delay!

    A psychiatric nurse can provide an independent assessment. It is usually GPs/Home that prescribe antipsychotics in my experience and a psychiatric nurse may have more knowledge and experience and may take a more holistic approach.

    Kind Regards
    Craig
     
  17. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    anti-psychotic drugs etc

    Good Morning

    No-one wants to see their loved ones agitated & distressed, but we don't want to see them "zonked out" either! I guess it's important to state that all drugs affect different people in different ways, but this is what we found.....

    When Dad was in the assessment unit in June he was prescribed quetiapine initially one tablet a day - but this was later increased to 2 a day. These tablets seemed to make him very sleepy day & night and appeared to rob him of all his personality. After discussion with CPN we reduced his dose to 1/2 tablet, but he was still very dozy all the time & non-responsive.

    I unfortunately missed the Panorama programme "Please look after my Dad" which was on a few weeks ago, but after friends had seen it and I looked at the follow-up on the internet. Quetiapine was specifically mentioned - and website stated it would take 2 weeks for the drug to "get out of the system"! I checked with Dad's consultant that it was safe to stop these drugs, and 3 weeks before Christmas we did so. Since then he has been a lot more "lively" with longer "good & lucid spells" - mobility has also shown some improvement. The "down-side" is that he has been having very restless nights (often staying awake all night) - perhaps this is the price we have to pay for having more of the "old Dad back" during the day! Medications are being reviewed again now that he is back in respite - so I'm keeping my fingers crossed that they can come up with a solution to the insomnia without knocking him out 24/7.

    Interesting to read earlier in this thread that Lorazepam was given as a daily dose, whether the sufferer was agitated or not. We were given the instruction to use this drug only when Dad becomes agitated, and generally 1/2 tablet is enough to calm him without making him sleepy. Generally the drug seems to take about 45 minutes to take effect & so I dispense this when I notice that the agitation starts "brewing". If Dad gets extremely agitated - Lorazepam doesn't seem to work (in fact nothing works when he gets into a real state), so I have to monitor constantly & try to "spot the signs early". Lorazepam has consequently become a bit of a "life-line" for us as it generally does seem to stop his agitation, but still allows Dad to have a better quality of life than "being zonked out" 24/7.

    Would be interested to hear of others experiences with using these drugs.

    Love

    Gill x
     
  18. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Gill et all,

    Just a reminder that there is an 'Urgent call for evidence
    into the use of antipsychotics (sedatives)' which the alzheimers society will send our behalf the All-Party Parliamentary Group on Dementia (APPG). Check out this thread if you have time

    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=8905

    Views and experiences can be submitted via the website:

    https://www.alzheimers.org.uk/site/scripts/xforms_form.php?formID=58

    The form is really easy to follow.

    Kind Regards
    Craig
     
  19. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #19 Margarita, Jan 26, 2008
    Last edited: Jan 26, 2008
    Better late then never Craig in getting back , had forgotten that I had ask that question.



    That my whole issue within my area where I live , they just won't allocate my mother a CPN, because she not got a mental illness as its organic, so won't come under the mental heath team in our area .

    So from what I understand from your answer , if I went to the doctor , saying I could not handle my mother challenging behaviors when she became agitated & distressed then they give her anti-psychotics drugs .


    I did get an assessment for my mother , back in 06, My doctor Just called out the memory nurse , who did another memory test , mum scored 10 , then said they nothing more they can do for her.

    That why I ask about the
    I think back when I posted I was finding mum challenging behaviors very hard to
    handle on my own , all I would read on TP is how they give them those anti-psychotics, which I did not like , because of seeing the change in my brother after having to take them .

    I did not agree with anti-psychotics drugs for people with dementia, but since living with mum seeing the rages she can get into with her confusion, so became very agitated & distressed, even with the late stages medication for AZ

    I can see the other side of the coin , in giving it to them for a while then stop then , like someone said they did above . but not to make life easier
    for anyone .




    And that is how I fist learn to live with mum AZ, when she was mobile it was scary , she would just lash out, have to be on the ball so much .

    Now she more weaker she harmless , but saying the wrong word , she can go into a rage of screaming talking fits .

    She had one last night when she saw my daughter eating a second packet of Crisps , all I said to her is she can't have another one because of her diabetic, salt levels that was it ! she shouted so much that it scared my daughter who said " No wonder I don't like coming around .

    ( If she could of got up, in her irrationel thinking , she would of gone for my daughter all because of what I said .)

    I had to tell my daughter that Nanny just thinking irrational.
     
  20. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Margarita,

    It is difficult to know what to suggest. Has the memory nurse not seen your mum for over a year? If it was me I'd request another visit directly or via the GP, a lot can change in one year.

    I think they are sometimes called Community Mental Health Nurses. Other than that all I can suggest is to phone the alzhiemers helpline on monday. They are a lot more likely to know what they are talking about than me. Sure they can advise on getting a independent assessment.

    cheers
    Craig
     

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