Medication

[Yorkshire-lass]

I’m interested in people’s experience of medication in moderate to severe Alzheimer’s please. My dad was diagnosed with moderate Alzheimer’s in November after he was sectioned (he lived alone and was taken into hospital after suffering a crisis) he is still currently sectioned and I feel like I am on a permanent rollercoaster with the change in symptoms and medication. Many of his symptoms I put down to medication but the hospital say it is the dementia progressing. In February I was very concerned about him as he was grimacing randomly, was emotionally detached, barely had any voice amongst other things and I asked his consultant to take him off Haloperidol as he had been on it since November and it was clearly causing side effects. They did and the difference in him was marked, although he was using the wrong words we could converse and enjoy each other’s company. At Easter there was talk of moving him into a nursing home. Then his aggression began to build and eventually there were several incidents being recorded each day (some caused my staff’s handling of him and some out of the blue). 3 weeks ago he was put on risperidone and immediately I saw a decline in him, he is emotionally detached, talking gobbledygook, hallucinating and is urinary incontinent on occasions, this week they have increased their he dosage. The manager of the hospital says his aggression has decreased, they will use it off license past 6 weeks, and that his symptoms are dementia related. I am meeting his consultant next week because I want to know what strategies they have used to calm him before putting him back on antipsychotics.
I feel completely alone in all this as my sibling lives in another country and my dad is single, and it’s beginning to take its toll on me.
So I would really appreciate hearing other people’s experience with the medicating of their relatives, especially those displaying aggressive behaviour.
My dad is currently given Memantine, fluoxetine, diazepam, risperidone and lorazepam as his PRN. He’s been on fluoxetine for nearly 20 years due to depression and anxiety.
(Sorry for the long post and thank you if you have got this far)

 

[SeaSwallow]

@Yorkshire-lass Welcome to Talking Point. It must be difficult for you to be the main person looking after the interests of your dad. I do not have any experience of medication for people with Alzheimer's as my husband has Lewy Body Dementia however I am aware of how difficult it is to get the medications right. This is even more difficult when the PWD also has depression.
I think that all you can do is have a really good chat with his consultant next week and outline all of your concerns, ask why each medication is necessary and what the end game is. It would be really useful if you were to write out a list of the questions that you want answered before the meeting so that you do not forget anything.

 

[Yorkshire-lass]

@Yorkshire-lass Welcome to Talking Point. It must be difficult for you to be the main person looking after the interests of your dad. I do not have any experience of medication for people with Alzheimer's as my husband has Lewy Body Dementia however I am aware of how difficult it is to get the medications right. This is even more difficult when the PWD also has depression.
I think that all you can do is have a really good chat with his consultant next week and outline all of your concerns, ask why each medication is necessary and what the end game is. It would be really useful if you were to write out a list of the questions that you want answered before the meeting so that you do not forget anything.

Thank you, yes I will write down everything I want to discuss. I’ve just had a call to say there were three incidents yesterday so things aren’t working as they are hoping. I definitely want to know what their plan is moving forward from here as he is so changeable.

 

[SeaSwallow]

Thank you, yes I will write down everything I want to discuss. I’ve just had a call to say there were three incidents yesterday so things aren’t working as they are hoping. I definitely want to know what their plan is moving forward from here as he is so changeable.

This must all be so hard for you - keep posting even just to vent about how you feel.

 

[Jaded'n'faded]

That's a lot of meds.

Realistically, when he's on all those drugs (with their various side effects and interactions) it is impossible to say what is causing what, what may be helping and what might be making things worse. So I completely understand your concerns.

Meanwhile, behind all this, his dementia is quietly getting worse because that's what dementia does.

When someone is sectioned there are procedures for prescribing that they will follow because it is regarded as standard for people with dementia. e.g. risperidone is first given as a low(ish) dose then gradually increased until it has the 'desired' effect. (Whatever that means.) But it doesn't suit everyone. Some have bad side effects, some see little difference at all, others are OK at a certain dosage but definitely not OK at a higher/lower dosage.

And that's just one of the drugs your poor dad is on. So it's... complicated. The aim of course is to tweak his meds until a stage is reached where he wouldn't have to remain under section. Achieving that is rather hit and miss though, as you have seen.

I suppose in an ideal world it might be best to remove all the drugs, see how he is without them (after a period of withdrawal) i.e. to see what behaviours are 'just' due to dementia. Then gradually start again, adding one drug at a time as necessary. But that's not going to happen, not least because it would take years of trial and error.

Talk to the doctors. Tell them your concerns and your observations of the changes in his behaviour when different drugs have been given. But they will make their own assessment of how he's doing and act accordingly. I think you are right though, to question what they have done or plan to do to manage his behaviours better without resorting to a chemical cosh.

Good luck - make sure your voice is heard.

 

[Palerider]

I think sometimes we forget psychiatric medications are designed to treat psychiatric illnesses, they were not designed for dementia (which is completely different) -the problem is there is no other alternative but to try these meds and see if they have an effect. The best option is non-pharmaceutical measures which requires the right environment and support -which these days is difficult to find for most people with limited budgets.

I agree with @Jaded'n'faded, it is also worth learning as much as you can about these medications and side effects so when you so speak with his care team you have some knowledge to fight his corner. It's all too easy these days to medicate rather than have the appropriate resources to manage without or with minimal medications.

 

[Yorkshire-lass]

I’ve got a fair amount printed off regarding side effects and the NHS strategy to reduce antipsychotic use in dementia. The manager of the unit basically said “I know you like to quote the Alzheimer’s society recommendations but what would you have me do? Take him off the antipsychotics and have him be aggressive? We couldn’t cope with him like that and he would have to go to a specialist hospital and maybe put in isolation.” Obviously I was quite upset after that conversation.

 

[Palerider]

I’ve got a fair amount printed off regarding side effects and the NHS strategy to reduce antipsychotic use in dementia. The manager of the unit basically said “I know you like to quote the Alzheimer’s society recommendations but what would you have me do? Take him off the antipsychotics and have him be aggressive? We couldn’t cope with him like that and he would have to go to a specialist hospital and maybe put in isolation.” Obviously I was quite upset after that conversation.

I think there has to be a balance between helping to manage behaviours and subjecting a person to medication where no one knows the real effect although it might subdue the behaviours we don't like or don't want -there is very much the focus that people with dementia who are challenging need to be controlled / restrained by chemical means, but when that does happen we then complain about the effect it has. The most appropriate management is the least restrictive and that includes chemical restraint -which is essentially the reason for giving these drugs. I find it odd that because 'we' don't like what dementia does the person with dementia is the one who ends up being the guinea pig in this. As I said and there is plenty of evidence that environment with the right support (non-pharmaceutical) is superior to these medications -if that means a specialist unit then why not?

 

[Yorkshire-lass]

I think there has to be a balance between helping to manage behaviours and subjecting a person to medication where no one knows the real effect although it might subdue the behaviours we don't like or don't want -there is very much the focus that people with dementia who are challenging need to be controlled / restrained by chemical means, but when that does happen we then complain about the effect it has. The most appropriate management is the least restrictive and that includes chemical restraint -which is essentially the reason for giving these drugs. I find it odd that because 'we' don't like what dementia does the person with dementia is the one who ends up being the guinea pig in this. As I said and there is plenty of evidence that environment with the right support (non-pharmaceutical) is superior to these medications -if that means a specialist unit then why not?

The unit he is on is for elderly dementia, the unit they are talking about (adult psychiatric) is the one he started on which frankly was like a prison, visiting was in the dining room only. And I don’t think having him isolated will be beneficial to him. It’s incredibly worrying.

 

[Palerider]

The unit he is on is for elderly dementia, the unit they are talking about (adult psychiatric) is the one he started on which frankly was like a prison, visiting was in the dining room only. And I don’t think having him isolated will be beneficial to him. It’s incredibly worrying.

It is difficult to know what to do for the best. There is no way of knowing if isolation should happen it would be for the long term but someone quashed on psychiatric meds is equally isolated remembering that such medications are not for the treatment of dementia and are quite potent in themselves. It is a difficult phase for some with dementia, but as the dementia progresses it will eventually pass. Anyway, only you can decide what to do, there aren't many options unfortunately which narrows your choices. I wish I could post something more useful for you.

 

[canary]

Nobody likes giving medication and if the right environment can sort it out then that is the best solution, but sometimes there is no other alternative than medication.
All medication causes side-effects, so you have to see whether the advantages of taking the drugs outweighs the disadvantages of the side-effects.
Aggression is a terrible symptom - it blights the life of the person experiencing it as its usually due to frustration and fear, it destroys meaningful social interaction and it prevents others being able to care for them properly.

 

[Yorkshire-lass]

Well the meeting last week with my dad’s consultant went as I expected… he told me all about how experienced he was and his qualifications and in general terms about assessing the cause of aggression in dementia patients. He felt that 50% of the incidents were caused by my dad not hearing or mishearing/misinterpreting what people were saying due to pre existing hearing loss. They feel the antipsychotic is having a positive effect (he’s not been agressing for

 

[Yorkshire-lass]

(Pressed post by accident) he’s not been aggressive for over a week now although some of that is because they are giving him his prn medication which is lorazepam. They’re also giving him tramadol for pain. My concerns regarding side effects were dismissed and put down to worsening dementia, despite him not having experienced urinary incontinence until he was put on respiridone and that being a 1 in 10 side effect. I am at my wits end, 7-8 months ago he was diagnosed with moderate dementia (he was hospitalised in part due to the side effects of mirtazapine) and now I have lost all traces of the man he was. Another family member visited yesterday and said he was just wondering round with a staff member, was very confused and very difficult to understand (4 weeks ago before the respiridone he would sit with you and hold a conversation - that didn’t make much sense but you knew what he was trying to say, he enjoyed his visits though) I am heartbroken and don’t know what to do.

 

[Looseleaf]

(Pressed post by accident) he’s not been aggressive for over a week now although some of that is because they are giving him his prn medication which is lorazepam. They’re also giving him tramadol for pain. My concerns regarding side effects were dismissed and put down to worsening dementia, despite him not having experienced urinary incontinence until he was put on respiridone and that being a 1 in 10 side effect. I am at my wits end, 7-8 months ago he was diagnosed with moderate dementia (he was hospitalised in part due to the side effects of mirtazapine) and now I have lost all traces of the man he was. Another family member visited yesterday and said he was just wondering round with a staff member, was very confused and very difficult to understand (4 weeks ago before the respiridone he would sit with you and hold a conversation - that didn’t make much sense but you knew what he was trying to say, he enjoyed his visits though) I am heartbroken and don’t know what to do.

My husband was on Risperidone on leaving hospial after Covid had caused delerium along with challenging behaviours. He improvred, and this was stopped which meant he was accepted in a dementis care home nearer to me. At Christmas he had to go back on Risperdone and increased Mirtazipine as the behaviours returned. He was then asked to leave the home and returned to the initial home where he gradually became Zombie like - not walking and no quality of life. This home GP agreed to Lorazipine for prn (unlike the previous gp who would not prescribe it). The home agreed to try leaving off the Risperidone and Mirtazipine as they now had Lorazipine as a backup. It took 6 weeks for him to improve. He is now at a stage 2 months on where the home manager suggested we could take him out for car rides and a cup of tea! There was one blip when another resident's visitor wrongly approached him. Lorazipine was administered and again for a couple of days he couldn't walk etc. But now he is back walking and more sociable.

The effect of these medications is dreadful but there seems to be little alternative. They need to be more closely monitored as it had to be up to me to say that he had no quality of life and could he try without the regular sedatives just the reserved Lorazipine!

I hope you can get something sorted.

 

[Yorkshire-lass]

My husband was on Risperidone on leaving hospial after Covid had caused delerium along with challenging behaviours. He improvred, and this was stopped which meant he was accepted in a dementis care home nearer to me. At Christmas he had to go back on Risperdone and increased Mirtazipine as the behaviours returned. He was then asked to leave the home and returned to the initial home where he gradually became Zombie like - not walking and no quality of life. This home GP agreed to Lorazipine for prn (unlike the previous gp who would not prescribe it). The home agreed to try leaving off the Risperidone and Mirtazipine as they now had Lorazipine as a backup. It took 6 weeks for him to improve. He is now at a stage 2 months on where the home manager suggested we could take him out for car rides and a cup of tea! There was one blip when another resident's visitor wrongly approached him. Lorazipine was administered and again for a couple of days he couldn't walk etc. But now he is back walking and more sociable.

The effect of these medications is dreadful but there seems to be little alternative. They need to be more closely monitored as it had to be up to me to say that he had no quality of life and could he try without the regular sedatives just the reserved Lorazipine!

I hope you can get something sorted.

Thank you, I just feel like I don’t know where to turn as the hospital are not listening to me. As I think I’ve mentioned previously he’s on Memantine, fluoxetine, diazepam (4mg 3 times a day) and lorazepam as prn and risperidone, he reacted badly to haloperidol and mirtazapine in the past. I feel he is his over medicated.

 

[Yorkshire-lass]

Well, I was resigned to the fact that my Dad was going to be agitated and barely recognise me for the considerable future. His offer of a care home place was withdrawn and I was told he needed a specialist unit (which are few and far between). Then they stopped the diazepam (4mg three times a day) and changed it for lorazepam (0.3mg three times a day) and since then there has been no aggression, no need for prn medication, he’s been a lot calmer and happier. He even gave me a big hug yesterday. I’m told he still needs a specialist unit due to the potential of him being violent. But it is just so nice to see him enjoy visits again.

 

[Jaded'n'faded]

Well, I was resigned to the fact that my Dad was going to be agitated and barely recognise me for the considerable future. His offer of a care home place was withdrawn and I was told he needed a specialist unit (which are few and far between). Then they stopped the diazepam (4mg three times a day) and changed it for lorazepam (0.3mg three times a day) and since then there has been no aggression, no need for prn medication, he’s been a lot calmer and happier. He even gave me a big hug yesterday. I’m told he still needs a specialist unit due to the potential of him being violent. But it is just so nice to see him enjoy visits again.

This is great news!

So much for the doctor telling you how experienced he was and the problem was all due to the dementia not drug side-effects...

You should document this - take notes of the when the drug changes happened and when his behaviour changed. It will give you good ammo should you be in a similiar position in the future. Not that anyone will listen...

 

[Sonya1]

I’m interested in people’s experience of medication in moderate to severe Alzheimer’s please. My dad was diagnosed with moderate Alzheimer’s in November after he was sectioned (he lived alone and was taken into hospital after suffering a crisis) he is still currently sectioned and I feel like I am on a permanent rollercoaster with the change in symptoms and medication. Many of his symptoms I put down to medication but the hospital say it is the dementia progressing. In February I was very concerned about him as he was grimacing randomly, was emotionally detached, barely had any voice amongst other things and I asked his consultant to take him off Haloperidol as he had been on it since November and it was clearly causing side effects. They did and the difference in him was marked, although he was using the wrong words we could converse and enjoy each other’s company. At Easter there was talk of moving him into a nursing home. Then his aggression began to build and eventually there were several incidents being recorded each day (some caused my staff’s handling of him and some out of the blue). 3 weeks ago he was put on risperidone and immediately I saw a decline in him, he is emotionally detached, talking gobbledygook, hallucinating and is urinary incontinent on occasions, this week they have increased their he dosage. The manager of the hospital says his aggression has decreased, they will use it off license past 6 weeks, and that his symptoms are dementia related. I am meeting his consultant next week because I want to know what strategies they have used to calm him before putting him back on antipsychotics.
I feel completely alone in all this as my sibling lives in another country and my dad is single, and it’s beginning to take its toll on me.
So I would really appreciate hearing other people’s experience with the medicating of their relatives, especially those displaying aggressive behaviour.
My dad is currently given Memantine, fluoxetine, diazepam, risperidone and lorazepam as his PRN. He’s been on fluoxetine for nearly 20 years due to depression and anxiety.
(Sorry for the long post and thank you if you have got this far)

@Yorkshire-lass - That sounds like one heck of a cocktail of medications! I think, in your situation, I would try and arm myself with some knowledge about the combination of meds. If you were able to make an appt with your local pharmacist, they would be able to tell you all about any drug interactions, side effects, whether or not they should be given adhoc or regularly and so on. It sounds very possible that if these meds are all PRN, it could really be messing with your Dad's brain/body/behaviours. At the very least it may give you the confidence to challenge whoever is prescribing them all. Much of his aggression could be exacerbated by mixtures of meds. Pharmacists know far more about medications than doctors do and are usually more than happy to help x