The use of antipsychotics in severe agitation

[mishy75]

I just wanted to share my mum's recent experience with the use of antipsychotic medication as I thought it may be helpful.
My mum has a mixed dementia and in recent months has become ever more agitated and, at times, aggressive towards my dad.
We tried all manner of things to try to alleviate her distress, all to no avail.
My dad was getting to the point where he no longer felt able to cope and for the first time we were seriously considering a care home for my mum- something we wanted to avoid for as long as possible.
Seeing my mum suffering as she was- trying to leave the house to go 'home', crying and tearing at her hair, pretty much every day,my dad took her to her GP who prescribed a very low dose of Risperidone.
Obviously, this is something I had reservations about and knew it was a bit of a gamble with regards to how my mum would tolerate it.
Anyway, since taking it, there has been a marked reduction in her level of agitation.
Yes, she still talks about going home and gets very disorientated and somewhat agitated when she is encouraged to stay where she is, but she is so much happier in herself and the great thing is that she is not at all sedated and has shown no side effects so far.
I know there has been a lot of controversy about the over, or misuse of these drugs, but I guess I am writing this as I want people to know that when used carefully and when all else has failed, the results can be very heartening.
I feel like I have got a bit of my mum back now,and whilst I realise that this can't last forever, I am grateful that she is now able to laugh and smile and enjoy the things she once loved such as making cakes and shopping.

 

[BeckyJan]

Thanks for sharing that with us. I am grateful also for my husband being put on a low dose of quetiapine which helped him so much, reducing his anxiety and helping him lead a more contented life.

As you say it did not stop or prevent the dementia progressing downwards but it certainly helped with improved quality. Used wisely and monitored properly antipsychotics can be of some benefit.

 

[Grannie G]

Yes. I`m another who has been grateful for a low dose of Amisulpride which also didn`t completely solve our problem but did ease the agitation and challenging behaviour.

As long as these drugs are given to help the patient rather than help the carers I think they are justifiable.

 

[Acco]

What a timely and helpful post, followed by positive contributions from others.
I have been on the receiving end of my wifes aggression, something which had never been evident in almost 40yrs of marriage. Only last week our mental health doctor suggested we try Risperidone when I mentioned my wifes recent aggression. I have always been concerned about the possible side effects of antipsychotics especially as I have no desire to see my wife subdued or 'dumbed down'. Presently, Risperidone has not been prescribed due to timing of communications between medical centres. For the last couple of weeks I have not seen any aggression, in fact, quite the opposite and much more like normal. I recall there was a period of aggression some 2yrs ago and there have been moments on and and off since but these have passed and I am left wondering if these are cyclical or triggered by physical changes taking place or by my actions/reactions. Any how, having read this post and the follow-up comments I am more settled in mind regarding the use of this medication - thank you all.

 

[CollegeGirl]

This is very reassuring to me, too, although my dad is dead set against them. But it's so good to hear a positive story like this, thank you.

 

[Rageddy Anne]

What a timely and helpful post, followed by positive contributions from others.
I have been on the receiving end of my wifes aggression, something which had never been evident in almost 40yrs of marriage. Only last week our mental health doctor suggested we try Risperidone when I mentioned my wifes recent aggression. I have always been concerned about the possible side effects of antipsychotics especially as I have no desire to see my wife subdued or 'dumbed down'. Presently, Risperidone has not been prescribed due to timing of communications between medical centres. For the last couple of weeks I have not seen any aggression, in fact, quite the opposite and much more like normal. I recall there was a period of aggression some 2yrs ago and there have been moments on and and off since but these have passed and I am left wondering if these are cyclical or triggered by physical changes taking place or by my actions/reactions. Any how, having read this post and the follow-up comments I am more settled in mind regarding the use of this medication - thank you all.

The reassurances do go a long way to putting my mind at rest too, because I'd seen reports of 'dumbing down' and been warned by friends as well. Agitated behaviour does seem to fluctuate, and just when I think I can't stand the aggression any more, we get a series of relatively good days, for no reason that I can think of. But it's good to think that a low dose might help at some stage.

 

[Dumbly]

I was so grateful to read your message re Risperidone. I am not a medical person, and I am tearing my hair out myself at the frustration I feel that no one is prescribing anything to calm my mother down. (see my other posts but mum has just moved to a nursing home). The useless GP apparently calls in to the NH every Monday and I raced over last week to attempt to discuss my mother's severe, crazy anxiety with him in the hope he could prescribe something. Unfortunately, he had left by the time I arrived but he did ring me. All he said was that it wasn't unusual for people to be upset when moving into a NH. and there was nothing he could do! My mother is distraught. Seeing her like that is making me and my sister ill with worry. I will get on the phone tomorrow and demand an assessment by a mental health doctor immediately and hopefully get a prescription for Risperidone. I am sure there must be something to help my poor mum. Her behaviour sounds exactly your mother's. My mum was also like this before she went into the NH 7 week's ago but is getting even worse. Fingers crossed!

 

[lleuadwen]

Thank you so much for posting Mishy75 it could not have been better timed! My mum started on amisulpride last Monday to help with her aggression and hallucinations. Mum is suffering from mixed dementia too and has taken a massive downturn in the last 10 weeks with no sign of bottoming out yet.

At the moment there is only a marginal improvement, she is a little less agitated but not much and the hallucinations are continuing, which luckily do not upset her. Her doctor was reluctant to give her this type of medication as he felt that up until now the risks outweighed the benefits but due to her rapid deterioration the time had come to try them.

The main issue is that mum is now sleeping loads, will not get dressed, has missed the loo a couple of times and her mobility has slowed and can be difficult for her, especially the stairs (dad has a stairlift being installed in the morning) and bath.

None of this is really new just getting worse, I'm guessing all this is due to her downturn and not the meds, as I have read that it can take up to about 6 weeks to be effective, so it is still early days I suppose.

X

 

[mishy75]

I was so grateful to read your message re Risperidone. I am not a medical person, and I am tearing my hair out myself at the frustration I feel that no one is prescribing anything to calm my mother down. (see my other posts but mum has just moved to a nursing home). The useless GP apparently calls in to the NH every Monday and I raced over last week to attempt to discuss my mother's severe, crazy anxiety with him in the hope he could prescribe something. Unfortunately, he had left by the time I arrived but he did ring me. All he said was that it wasn't unusual for people to be upset when moving into a NH. and there was nothing he could do! My mother is distraught. Seeing her like that is making me and my sister ill with worry. I will get on the phone tomorrow and demand an assessment by a mental health doctor immediately and hopefully get a prescription for Risperidone. I am sure there must be something to help my poor mum. Her behaviour sounds exactly your mother's. My mum was also like this before she went into the NH 7 week's ago but is getting even worse. Fingers crossed!

I am very sorry to hear of your awful experience and also to hear how distressed your mum is at the moment.
It is horrendous to witness someone going through so much inner torment and being unable to reach them no matter what you say or do.
I think it is sometimes hard it get people to take what you are saying seriously, especially if the person concerned is not displaying any overtly agitated behaviour at the time!
However, I think that if you persevere with this, then your mum's GP will hopefully be amenable to starting something that will help her.
Yes, the transition period when moving into a care home can be difficult, but that does not mean that your mum should be left as she is at present.
I really wish you luck tomorrow and hope the GP considers everything you say.

 

[sue38]

As long as these drugs are given to help the patient rather than help the carers I think they are justifiable.

Absolutely.

 

[sistermillicent]

I think it is justifiable to give these drugs to help the carers AND the patient. I was far more concerned with the effect mum's aggression and indeed attempts to kill dad were having on Dad than I was concerned about how mum was feeling.
i stress that it was in the moment, later on i had less of an emergency to deal with and thought the drugs would benefit mum as well because she would not be in such a distressed state, and had she not been given them she would have been sectioned.

If a carer can't look after someone then that someone is going to end up in a revolting and extremely uncomfortable state, so I suppose again, although the drug may be given in the first instance to help the carer it is ultimately to benefit the patient.

I don't think it is always possible to separate the two,.

 

[Nebiroth]

I was so grateful to read your message re Risperidone. I am not a medical person, and I am tearing my hair out myself at the frustration I feel that no one is prescribing anything to calm my mother down. (see my other posts but mum has just moved to a nursing home). The useless GP apparently calls in to the NH every Monday and I raced over last week to attempt to discuss my mother's severe, crazy anxiety with him in the hope he could prescribe something. Unfortunately, he had left by the time I arrived but he did ring me. All he said was that it wasn't unusual for people to be upset when moving into a NH. and there was nothing he could do! My mother is distraught. Seeing her like that is making me and my sister ill with worry. I will get on the phone tomorrow and demand an assessment by a mental health doctor immediately and hopefully get a prescription for Risperidone. I am sure there must be something to help my poor mum. Her behaviour sounds exactly your mother's. My mum was also like this before she went into the NH 7 week's ago but is getting even worse. Fingers crossed!

I am really surprised that your mother has not been referred to a specialist; this is normal procedure as dementia is a specialised area and every GP I ever heard of has referred to a consultant for a confirmation of diagnosis and treatment (although obviously, the Gp remains first point of contact and can prescribe if necessary).

The consultant would be something like a geriatric psychiatrist or dementia specialist.

Certainly, moving (anywhere, not just a care home) can be distressing, as change sof place, person and routine can distress and make someone more confused. I am surprised to hear that "nothing can be done" though.

Do you have a health and welfare power of attorney? If you do I would be insiting on a second opinion. Any patient may ask for a second opinion from a general practioner at any time, without being required to give a reason. However, a second opinion at consultant level requires a new referral to be made from the patient's GP.


As to these drugs I have always been of the opinion that they have their place. The bad press they have received has mostly been from inappropriate use, sometimes with heavy doses used to sedate residents of care homes for the convenience of staff.

There is no reason why they cannot be used to alleviate distress, anxiety, agression - the trick is to find the appropriate drug, at a dose which produces maximum benefit for minimum side-effects (which can be virtually none)

It is correct to say that the full beneficial effects can take several weeks to full manifest. Also, individual reaction varies a lot.

So finding the right dos eof the right drug can be a lengthy and frustrating process of trial and error.

 

[sue38]

I think it is justifiable to give these drugs to help the carers AND the patient. I was far more concerned with the effect mum's aggression and indeed attempts to kill dad were having on Dad than I was concerned about how mum was feeling.
i stress that it was in the moment, later on i had less of an emergency to deal with and thought the drugs would benefit mum as well because she would not be in such a distressed state, and had she not been given them she would have been sectioned.

If a carer can't look after someone then that someone is going to end up in a revolting and extremely uncomfortable state, so I suppose again, although the drug may be given in the first instance to help the carer it is ultimately to benefit the patient.

I don't think it is always possible to separate the two,.

I do agree. Perhaps saying antipsychotics should only be used to benefit the person with dementia is an over simplification. My dad was prescribed quetiapine, and whist it made him less stressed, in turn it reduced his tendency to lash out (with some force I might say) at carers, thus meaning they could actually 'care' for him.

I think it goes without saying that antipsychotics should not be used just as a medical cosh to give carers an easy life, but it does annoy me when it's suggested that this is their only purpose.

 

[janice northam]

I do agree. Perhaps saying antipsychotics should only be used to benefit the person with dementia is an over simplification. My dad was prescribed quetiapine, and whist it made him less stressed, in turn it reduced his tendency to lash out (with some force I might say) at carers, thus meaning they could actually 'care' for him.

I think it goes without saying that antipsychotics should not be used just as a medical cosh to give carers an easy life, but it does annoy me when it's suggested that this is their only purpose.

If my loved one was NOT on his antipsychotic,I believe he would still be wandering and more hostile. But,he only takes this at bedtime,which helps him sleep...or it used to help. His cognition has plummeted of late.

 

[Callieflower]

Thank you for posting. My Mam has been in a Nursing Home for 5 weeks and has become increasingly aggressive and at times violent. We were desperate so I saw her G.P last Monday. He prescribed Haloperidol for her. When I got home and read up on it I was horrified and so worried. I needn't have been concerned. She has certainly improved, she seems more settled and has had only one bad day in the past week. No side-effects at all thankfully. Today she played with her toddler Grandson, something that happens so rarely, and certainly not at all of late. So far so good, fingers crossed that it remains this way.

 

[susankell]

I wanted to comment here as it is something I have a great deal of experience with through caring for my dad who was placed on Amisulpride for his agitation. I was part of a focus group run by the Alzheimer's Research Society in 2011 to discuss the use of antipyschotics and was asked by the Society to write a summary about the meeting for their newsletter. I think I was asked to write this as I was the only person in the group (approx 8 if I recall correctly) who could see a use for them if prescribed in the right manner and monitored adequately. I would like to share with you all what I learned from my experience. I discovered Risperidone is the ONLY antipsychotic approved by NICE to be used in cases of dementia. This raises the question as to why other antipsychotics, like Amisulpride, are used at all if they have not been approved by NICE. Is it because they are cheaper alternatives? Or is it a lack of awareness by the GP's as to the facts? These are rhetorical questions as I do not know if there is an answer. The other fact I found disturbing, because I was unaware of it until I did my own research, is that noone should be kept on antipsychotics for more than 6-12 weeks. They should be used as a short-term solution and not used permanently. This is because it has been shown that the use of antipsychotic medication doubles the risk of death and triples the risk of stroke in elderly patients (if my memory serves me right). MONITORING is essential and carers of those with dementia should insist the drug is monitored regularly. If the drug is discontinued after 6-12 weeks and the symptoms return then, and ONLY then, is there a case for it to be reinstated. When my Dad was placed on this drug it was back in 2007 before the Alzheimer's campaign to reduce the use of them. I should add here I FULLY supported that campaign as too many people, particularly those in residential care, were being prescribed antipsychotics to manage behavioural/psychological symptoms without recourse to any other attempt at symptom control. We have a greater knowledge now than then of the effects of this medication. We realised that Dad should not have been kept on Amisulpride for the lenght of time he was (about 6 months at that time) and my brother, in consultation with pyschiatric services, started to wean him off if. We got Dad to the stage where he was no longer taking it only for the same services to place him back on it when neither my brother or I were there to prevent it. Not only that, we had to increase the doseage at regular intervals to prevent his agitation until he was on about 250mg/day. One Dr at the GP's surgery told us it was safe to go up to 400mg/day and another told us 300mg/day. Then when the consultant came to see Dad, at our request, in 2012 he informed us Dad was over-sedated and should not have been on more than 125mg/day! When I asked why he thought the GPs had told us 300-400mg/day was OK his reply was that was the recommended dose for younger people with schizophrenia not for elderly people with dementia. To say I was angry is an understatement as the psychiatric nurse had been coming to see Dad twice yearly, supposedly to monitor him, and was responsible for putting Dad back on it in the first place after we had successfully taken him off it! In fact, I believe Amisulpride was responsible for Dad slipping into a comatose state for a week in mid-2011 which he did recover from and lived for another 18 months. My point here is that even the medical professionals who were supposedly monitoring Dad were advising us differently so it is essential we, as carers of the vulnerable, are well-informed regarding any medication our loved ones are given throughout the course of their illness. Also, other methods for treating BPSD should be tried BEFORE medication is given. Sorry for the long post but I wanted to give you all the facts. Hope it is of some use. Susan

 

[Acco]

Susan, Thank you very much for providing us with your detailed and informative account. I have made a note of a few points to keep in mind when next discussing antipsychotics being prescribed for my wife (Risperidone being proposed). I also fully support your view that we as carers need to be well informed about medication and treatment prescribed for our loved ones. I have seen the confusion and misinformation that has occured during my wifes treatment and was glad that I had read some facts and was able to raise appropriate questions when the need arose.

 

[Canadian Joanne]

My mother has been on anti-psychotics for over 12 years now for extreme agitation, aggression and violence. We have had to tweak her dosages and switch drugs during this time. Now that she is in the later stages of Alzheimer's we have been gradually reducing her anti-psychotics and other medications, except for the Alzheimer's medications of memantime and galantamime.

Anti-psychotics have a place IF they are carefully monitored.

 

[Dumbly]

More on drugs

I wanted to comment here as it is something I have a great deal of experience with through caring for my dad who was placed on Amisulpride for his agitation. I was part of a focus group run by the Alzheimer's Research Society in 2011 to discuss the use of antipyschotics and was asked by the Society to write a summary about the meeting for their newsletter. I think I was asked to write this as I was the only person in the group (approx 8 if I recall correctly) who could see a use for them if prescribed in the right manner and monitored adequately. I would like to share with you all what I learned from my experience. I discovered Risperidone is the ONLY antipsychotic approved by NICE to be used in cases of dementia. This raises the question as to why other antipsychotics, like Amisulpride, are used at all if they have not been approved by NICE. Is it because they are cheaper alternatives? Or is it a lack of awareness by the GP's as to the facts? These are rhetorical questions as I do not know if there is an answer. The other fact I found disturbing, because I was unaware of it until I did my own research, is that noone should be kept on antipsychotics for more than 6-12 weeks. They should be used as a short-term solution and not used permanently. This is because it has been shown that the use of antipsychotic medication doubles the risk of death and triples the risk of stroke in elderly patients (if my memory serves me right). MONITORING is essential and carers of those with dementia should insist the drug is monitored regularly. If the drug is discontinued after 6-12 weeks and the symptoms return then, and ONLY then, is there a case for it to be reinstated. When my Dad was placed on this drug it was back in 2007 before the Alzheimer's campaign to reduce the use of them. I should add here I FULLY supported that campaign as too many people, particularly those in residential care, were being prescribed antipsychotics to manage behavioural/psychological symptoms without recourse to any other attempt at symptom control. We have a greater knowledge now than then of the effects of this medication. We realised that Dad should not have been kept on Amisulpride for the lenght of time he was (about 6 months at that time) and my brother, in consultation with pyschiatric services, started to wean him off if. We got Dad to the stage where he was no longer taking it only for the same services to place him back on it when neither my brother or I were there to prevent it. Not only that, we had to increase the doseage at regular intervals to prevent his agitation until he was on about 250mg/day. One Dr at the GP's surgery told us it was safe to go up to 400mg/day and another told us 300mg/day. Then when the consultant came to see Dad, at our request, in 2012 he informed us Dad was over-sedated and should not have been on more than 125mg/day! When I asked why he thought the GPs had told us 300-400mg/day was OK his reply was that was the recommended dose for younger people with schizophrenia not for elderly people with dementia. To say I was angry is an understatement as the psychiatric nurse had been coming to see Dad twice yearly, supposedly to monitor him, and was responsible for putting Dad back on it in the first place after we had successfully taken him off it! In fact, I believe Amisulpride was responsible for Dad slipping into a comatose state for a week in mid-2011 which he did recover from and lived for another 18 months. My point here is that even the medical professionals who were supposedly monitoring Dad were advising us differently so it is essential we, as carers of the vulnerable, are well-informed regarding any medication our loved ones are given throughout the course of their illness. Also, other methods for treating BPSD should be tried BEFORE medication is given. Sorry for the long post but I wanted to give you all the facts. Hope it is of some use. Susan

Thanks to everyone for that information. When my mother moved down here 3 years ago she was under the care of the local memory clinic who did put her on the Ebixa and at my request, citalopram the anti depressant. She was then signed over to her GP and we were told that they would now be responsible for her medication. No offence to them but they have no idea how to care for anyone with dementia. The mental health nurse last visited my mother last August and I was on holiday. My dad was with her and told me on my return that the nurse was going to contact me with a view to possibly changing my mum's medication. She never called and I did not have her contact details although I was really annoyed that I had not managed to see her. Shortly after that mum fell over and broke her hip. A long story which I won't go into here but mum ended up in hospital for 5 weeks and is now in this nursing home which means a change of GP and change of mental health hospital. I finally managed to get the details of the new mental health nurse today and spoke to her at length. It was so difficult trying to get through to her that my mum needs to see someone about medication urgently. No one has ever mentioned to me about these antipsychotic drugs. I know they have had a bad press but I really think my mum needs to try anything to help her anxiety and said that to her. She said someone would be in touch!! She (the nurse) also told me she had visited my mum's nursing home last Friday (I was probably there with my mother), and had asked how my mum was settling in as she had just been given her name as a new resident. I couldn't believe that the Assistant Manager (also a nurse) had said my mum was settling in well. What rubbish. Her carers both tell me my mum is not settling in at all and just calls for me and my dad all the time, getting violent sometimes and using foul language. You are so right about getting people to take you seriously. The manager just sees my mum sitting in her corner and doesn't talk to her so she has no idea just how tormented she is. Today, when I visited my mum I called her in so she could see at first hand what my mum was really like and I think she got the message. She told me not to go in tomorrow as my being there was making my mum worse, which of course it is because she wants me to take her home. My dad said he can't face going in tomorrow because all he gets is abuse and it is too distressing. I am going to send my husband in instead because mum won't recognise him and I want to make sure the staff are looking after her properly (I have my doubts). She might settle a bit, but obviously when I do go in again, even if I leave it a few days, I just know she will still want me to take her home and be just the same again ... but you never know! Hopefully I will get a call from the hospital tomorrow. I left them another message this afternoon to reiterate how urgent it was that someone prescribed something for my mum.

 

[Acco]

Having mentioned my wifes momentary periods of aggression, I was not asked what form it took, how often it occured, how long it lasted, or anything else about it. I was not asked if my wife showed any aggitation or signs of possible discomfort or pain. I was not asked how I reacted to her aggression. There was no mention of alternative approaches to trying to control her periods of aggression. Following this consultation it was said our GP would be requested to prescribe Risperidone which it was said could be used by me as her carer as and when it was necessary!
Prior to discussing my wifes needs, when the consultant kept using an incorrect first name we spent many minutes trying to convince him that we were not that person. In the end it was clear he was referring to someone elses file and this became very clear when he gave us the address from his file (I actually knew the address and the person who lived there)!
It is with this experience in mind that I have and continue to question the proposed Risperidone for the treatment of my wifes aggression. Should the GP follow the consultants advice and prescribe it, I will request an appointment to discuss the matter with him prior to any implementation.