Aggressive behaviour and care homes.

[JOD1501]

Hi, this is my first post, and I’m really looking forward to sharing pain, happiness and all that comes with Alzheimer’s. My mum is 83 and was diagnosed with Alzheimer’s in 2014. My dad passed away last year after poor health for 11 months and during that time we saw quite a decline in mum. Mum now has live in care, but recently she has become aggressive and has hit, pushed, and pulled the hair of the carer. Whilst this is part of Alzheimer’s, and the care company advertises they deal with dementia care, it does make me wonder......... the aggression is now daily. Mum’s medication and been reviewed and her antidepressant will be changed (she has to reduce her current dosage and be weened off of her current one before the new one can be prescribed). This, we are told, should help with the aggression, but between now and then (whenever that is) things could get worse before they get better, if they even do get better. Mum also struggles to sleep, even though she has been given various forms of sleeping tablets over the recent years. She night wanders and can go for 3 days/nights without sleep. I’ve been reading threads on here about aggressive behaviour and care homes servicing notice to aggressive clients. It worries me that mum might need care home support if the current carer/care company refuses to care for mum at home, and if that is the case, who will take her if she is aggressive? A care home is really the last resort as mum is so physically active and has a good network of neighbours who pop in to see her, she also goes to WI, coffee mornings, and has a therapy dog visit once a week. She cannot go out on her own and does get very teary when I leave her. I feel I don’t have a life and haven’t since my dad became ill in 2016. I don’t want mum to go into a home, and don’t even know if anybody would accept her with her aggression. Has anybody experienced anything similar and if so, what did you do? Any help, suggestions etc would be most welcome.

Many thanks.

 

[love.dad.but..]

Hello and welcome. It is a difficult challenge to try to manage especially if the occurences are becoming more frequent. Some dementia care homes will handle some aggression, others would want to move an aggressive resident on and there are some Elderly Mentally Impaired (EMI) homes that manage aggressive behaviour quite well.Have the carers or care company told you they are finding it difficult to deal with your mum's aggressive behaviour?

 

[JOD1501]

Hello and welcome. It is a difficult challenge to try to manage especially if the occurences are becoming more frequent. Some dementia care homes will handle some aggression, others would want to move an aggressive resident on and there are some Elderly Mentally Impaired (EMI) homes that manage aggressive behaviour quite well.Have the carers or care company told you they are finding it difficult to deal with your mum's aggressive behaviour?

Hi, thanks for your response. The first incident was overlooked by the carer. The second was reported to the care manager who alerted Safeguarding, CQC and launched an internal investigation. The third was overlooked by the carer. The carer is now on holiday and we have a relief carer, who unfortunately has encountered two aggressive episodes in 3 days and hasn’t reported them but is struggling with mum’s aggression. I feel that sooner rather than later this will all escalate and we will be served notice (2 weeks notice), so I’m trying to understand what our next steps would be. I really don’t want mum to go into a home - unfamiliar place, out of sight from her lovely neighbours, socially excluded etc etc. She has lived in the same house for 50+ years and so have many of her neighbours, so we really do want to keep her there. We are hoping the medication change will d some good, but in the interim we have to deal with the incidents which are becoming more frequent. The sad thing is mum doesn’t know she is doing it and she hasn’t got a bad bone in her body, so it’s really hard to hear about and hard for her to understand that she is misbehaving. She told me she would kill herself if she had to go into a home.

 

[Dave66]

Hi JOD 1501, welcome to the best place around for help, advice, laughter and tears.

Up until last year my Mam lived in here home for 50+ years, her aggression, violence and agitation got too much for Dad to handle and sadly, she is now in an "Enhanced" Unit of a "Care" Home, due to her being banned from standard care homes for her behaviour.

I have repeatedly requested over the last18 months or so that something be done to ease or stop Mam's behaviour and every time I have been fobbed off with "we don't like to prescribe anything that could make her a zombie, it's best to "manage" her behaviour".

Mam has been prescribed Lorazepam to try and "calm" her, this has failed, mainly due to the fact that the Lorazepam can only be used as and when absolutely necessary (which is every day) and only 0.5mg twice per day. 1mg works almost straightaway, but doesn't last the full 24 hours, 0.5mg has very little effect.

They have also played around with her anti depressant, Mirtazapine and with Promethazine, all have failed to make an impact on Mam's behaviour.

I guess what I'm really saying by relaying this is, DON'T be fobbed off, DON'T let the "system" dictate the speed at which things are done, DON'T allow the "experts" in Adult Social Care & the Mental Health Team to get away with using "manage the behaviour" as an easy opt out.

DO educate yourself as to what medication is being used elsewhere.
DO stand your ground and push as hard and often as you have to.
DO fight and fight for what is best for your Mum.

Good luck with what is to come your way over the coming days/weeks/months and years, it's very hard, tiring, challenging fighting the system as well as this cruel illness, but it is possible to win some of the fights along the way.

 

[JOD1501]

Hi JOD 1501, welcome to the best place around for help, advice, laughter and tears.

Up until last year my Mam lived in here home for 50+ years, her aggression, violence and agitation got too much for Dad to handle and sadly, she is now in an "Enhanced" Unit of a "Care" Home, due to her being banned from standard care homes for her behaviour.

I have repeatedly requested over the last18 months or so that something be done to ease or stop Mam's behaviour and every time I have been fobbed off with "we don't like to prescribe anything that could make her a zombie, it's best to "manage" her behaviour".

Mam has been prescribed Lorazepam to try and "calm" her, this has failed, mainly due to the fact that the Lorazepam can only be used as and when absolutely necessary (which is every day) and only 0.5mg twice per day. 1mg works almost straightaway, but doesn't last the full 24 hours, 0.5mg has very little effect.

They have also played around with her anti depressant, Mirtazapine and with Promethazine, all have failed to make an impact on Mam's behaviour.

I guess what I'm really saying by relaying this is, DON'T be fobbed off, DON'T let the "system" dictate the speed at which things are done, DON'T allow the "experts" in Adult Social Care & the Mental Health Team to get away with using "manage the behaviour" as an easy opt out.

DO educate yourself as to what medication is being used elsewhere.
DO stand your ground and push as hard and often as you have to.
DO fight and fight for what is best for your Mum.

Good luck with what is to come your way over the coming days/weeks/months and years, it's very hard, tiring, challenging fighting the system as well as this cruel illness, but it is possible to win some of the fights along the way.

Hi, and thanks so much for your response. After writing my initial message, I spoke at length to mum’s dementia nurse who reassured me immensely. She believes the issue is with mum’s carers and that they don’t know how to handle someone with dementia correctly. She questioned their training and is going to meet one of them next week to educate them. She mentioned lorazepam but said she did not want to prescribe it as mum’s aggression is reactive and can be handled by the carers if they had the correct skills to diffuse situations and divert mum’s attention to something else. She said it’s like drinking 4 glasses of wine and should only be used in extreme circumstances for a short period of time. She has also reviewed mum’s medication and is changing her antidepressant (Citalopram) to Mirtazapine and she hopes this will also address the sleeping issues we have. She has suggested mum does not take melatonin at night as this is not doing anything for her. So I am hopeful that a change in medication and reviews by the dementia nurse will be effective. She is coming back next week to see mum. It is very hard - I tell people you mourn someone who is still alive and that’s the hardest part. Staying positive at the moment until s9methunf else happens! It’s a rollercoaster.......

 

[LadyA]

@JOD1501 So did the nurse explain what, in her opinion, the Carers are doing to trigger the aggression?

Unfortunately, with dementia, sometimes the gentlest people will get very aggressive at times, and you just can't distract them. Particularly if the aggression is triggered by something that needs doing, like changing pads. My husband would get very aggressive with me about personal care, and I have a lot of training. He wasn't having a woman doing anything like that. Eventually he had to go to a Nursing Home, and never showed any aggression there, because they had a high proportion of male staff, who dealt with my husband.

What I'm saying is, it's all very well for the nurse to say the carers need the skills to diffuse and divert - but sometimes, that's just not possible. However, if it's that your mum is reacting to certain situations - like personal care - then introducing a second carer at times to help with that might be the best distraction. At least until the medication is reviewed, and see how things are then.

 

[Loiusa]

Hi JOD 1501, welcome to the best place around for help, advice, laughter and tears.

Up until last year my Mam lived in here home for 50+ years, her aggression, violence and agitation got too much for Dad to handle and sadly, she is now in an "Enhanced" Unit of a "Care" Home, due to her being banned from standard care homes for her behaviour.

I have repeatedly requested over the last18 months or so that something be done to ease or stop Mam's behaviour and every time I have been fobbed off with "we don't like to prescribe anything that could make her a zombie, it's best to "manage" her behaviour".

Mam has been prescribed Lorazepam to try and "calm" her, this has failed, mainly due to the fact that the Lorazepam can only be used as and when absolutely necessary (which is every day) and only 0.5mg twice per day. 1mg works almost straightaway, but doesn't last the full 24 hours, 0.5mg has very little effect.

They have also played around with her anti depressant, Mirtazapine and with Promethazine, all have failed to make an impact on Mam's behaviour.

I guess what I'm really saying by relaying this is, DON'T be fobbed off, DON'T let the "system" dictate the speed at which things are done, DON'T allow the "experts" in Adult Social Care & the Mental Health Team to get away with using "manage the behaviour" as an easy opt out.

DO educate yourself as to what medication is being used elsewhere.
DO stand your ground and push as hard and often as you have to.
DO fight and fight for what is best for your Mum.

Good luck with what is to come your way over the coming days/weeks/months and years, it's very hard, tiring, challenging fighting the system as well as this cruel illness, but it is possible to win some of the fights along the way.

Hi have you managed to control your mums aggression? I am currently in the same position, my mum is in an EMI home and Tuesday when I visited she was like a zombie, couldn't speak, eat or move herself which was very unlike her, I questioned the nurse and was told that she had been given Lorazepam without any discussion with family, went again Wednesday and she was still asleep until 4pm. I have now told them not to give her the drug anymore as we don't want her turning in to a zombie. She is only sometimes aggressive, and this is only in the day time, she has 1-1 care at night and is no problem for night staff.

 

[Linbrusco]

Im not from the UK, but my Mum has Alzheimers, now 5-6 yrs and has been in a Secure Dementia Care Home now 20 mnths.
Mum was very docile, compliant, happy etc at her care home, until this time last year.
2 UTI's was all it took, to send her into a state of aggression, agitation, anxiety, hitting carers, delusional etc
Care Home also likes to manage behavior first, but when it came to hitting, and not showering and hygiene issues, they started ( with my permission) Mum on .5mg of Lorazepam in the morning when she was at her worst.
Seemed to help a little, but after a few weeks, very much had a sedating effect, she couldnt string a sentence together and was very wobbly on her feet.
They took her off this and increased her anti depressant.... no effect.
August last year Mental Health Nurse on consult with me suggested low dose Quetipaine in the morning which is anti psychotic, and as she had lost significant weight, help with her appetite.
I was a bit concerned, but it was going to be reviewed weekly.
Once again Quetiapine worked, and lovely to see our "old" Mum ( pre UTI's) after a few weeks they had to adjust the dose, and again, until she was on 25mg am, 12.5mg midday & 12.5mg pm.
This has worked quite well for past 3 months, and at least Mum was stable.

This past week has seen Mum back to the aggressive, agitated stage, has not slept a full night in 4 days.
Hitting and spitting. They tried desperately to get a UTI sample, but Mum wont cooperate.
Mum is also now in pullups which makes it more difficult, they did however manage to get a blood test.
Although they have put her on anti bs regardless, if there is not much change, they are going to increase her Quetipaine at night in the hopes that it will make her sleep.
Her exhaustion and lack of sleep is contributing to her behaviour.

Personally I dont feel its in anyones interest PWD, their Carers or family for them to be in a permanent stage of aggression, agitation etc and their behaviour to be managed. Not saying medication should be the first resort, but managing behaviours like this is all consuming.
Mums care home cannot have 2 and 3 carers trying to cope with Mums needs and behaviour when their are 19 other residents.
We would rather Mum have some form of medication, than have to be transferred to a Geriatric Psych Nursing Home.... but then you dont want them too sedated Its a nightmare. I truly sympathise.

 

[70smand]

I am also thinking along the same lines as Lady A’s response with regards to carers - sometimes even the seemingly best trained person in the world can’t anticipate a person with dementia’s aggression. Yes, there are often triggers, but also there can be paranoia or agitation for no obvious reason.

I am sorry for your situation Louisa. We used to give Dad lorazepam only If he became unmanageable and completely paranoid as a last resort, but at the time he was fit and well and all it ever did was get him to sit down for half an hour and forget why he had become so agitated in the first place. It’s an ok drug to use if nothing else works but not at all ideal if someone is frail and elderly. Unfortunately this is where I feel there are far too few suitable drugs for people with aggressive behaviour related to dementia. Most of the antipsychotic medication has such awful side effects. Good for you for standing up for your mum, medication such as lorazepam should always be a last resort.