My Father has been diagnosed with Lewy body dementia

[Janeyjudo]

Hi everyone, I am new to this forum. A bit of history, my mother has late stage dementia and is in a very nice care home, my two uncles (mums brothers) also had dementia and were in care homes until they sadly died. My brother and me cared for our uncles as they did not have any other family, but my Dad cared for my mum at home until last Christmas when it became too much for him.

He then moved into a warden aided bungalow where although we had a few initial problems he was settling in OK. Then about a month ago, things started to change and he started to have more regular hallucinations and other problems. We had an appointment with the doctor at beginning of September when he was prescribed citalopram and olanzapine assuming he was suffering from depression. He deteriorated extremely fast and ended up in hospital a week later. Since then he has had a Dat scan which confirmed Lewy body dementia but has deteriorated significantly each day. We have been visiting every day, usually twice a day and it is starting to take its toll on me and my brother. They have since increased the dose of olanzapine which is concerning us when we read about LPD and the use of antipsychotic drugs on the Internet. Has anyone any comments on this treatment?

 

[Kevinl]

Hi Janey, welcome to TP.
My wife did take Citalopram, not sure if it worked or not but what they're giving sounds like the standard or conventional way of prescribing. Ultimately nothing "works" it's all about keeping him/her stable and out of the bad places their imagination can take them to. There is a lot of stuff on the internet about all kinds of medicines, some well informed, some less so but ask yourself would you rather be around someone under-prescribed when they are having "regular hallucinations and other problems".
I feel it's one left best to the professionals, some of the concerns they have may be for those involved as much as the person in question. It's a fine balance in this situation is the increased dose the best all round for everyone concerned?
It's admirable you and your brother are doing what you do and monitoring what's happening but sometime you have to "trust to the judgement of others" it's not necessarily the doctor taking the "lazy" option it might be the best way forward.
No two journeys on here are the same each will differ.
K

 

[sleepless]

I remember reading that antipsychotics should not be given to people with LBD.

I would contact the doctor and explain your concerns and the reason for them, and hear what he/she says in response.
It may be that Olanzapine is the exception to the rule, but I would ask, especially given your father's rapid decline since starting taking the drug.

 

[Aitchbee]

I agree with Sleepless that it would be advisable to make an appointment to speak to the consultant at the hospital about your concerns. Has your Dad been seen by a psychiatrist? My Mum has DLB and hallucinates for much of the time. She is on Rivastigmine which has helped although as the disease has progressed the hallucinations have returned. We would have liked to increase the dosage but she has a low pulse rate so this wasn't advised. The psychiatrist prescribed Quetiapine (like Olanzapine, another atypical antipsychotic) but as yet we haven't given Mum any as we don't feel she is particularly distressed. Like you we were wary of giving her antipsychotics, also, her GP didn't seem keen on giving her them. Like Kevini says, each person is different and your Dad's symptoms may require these meds, particularly if he is distressed and agitated. Atypical antipsychotics are used to treat hallucinations and agitation in some cases of
DLB but caution is needed and a low dose to start with

 

[Ann Mac]

Hiya Janey,

My Mil (Mum in law) has recently had her diagnosis changed from Vascular dementia to LBD, by a psychiatrist at the hospital she attends, and the first thing he did was prescribe Orlanzapine. He said that this particular medication is frequently used for LBD and is usually effective in helping with the delusions/hallucinations. I can't say we have noticed any decline in the amount of delusions she suffers, or the frequency, BUT - and for us its a big 'but' - the tone of the delusions has changed massively. From fretting about being hit and beaten by everyone she encountered, and often terrifying delusions involving 'gangsters' and 'gunmen' and people threatening her with knives, she is now having delusions about less unpleasant things. Still wearying and difficult to deal with, but so much better than trying to convince her that 'No love, I promise - its OK to go into B&Q - there are no gunmen there!'.

I hope this helps reassure you xxx

 

[henfenywfach]

Hi everyone, I am new to this forum. A bit of history, my mother has late stage dementia and is in a very nice care home, my two uncles (mums brothers) also had dementia and were in care homes until they sadly died. My brother and me cared for our uncles as they did not have any other family, but my Dad cared for my mum at home until last Christmas when it became too much for him.

He then moved into a warden aided bungalow where although we had a few initial problems he was settling in OK. Then about a month ago, things started to change and he started to have more regular hallucinations and other problems. We had an appointment with the doctor at beginning of September when he was prescribed citalopram and olanzapine assuming he was suffering from depression. He deteriorated extremely fast and ended up in hospital a week later. Since then he has had a Dat scan which confirmed Lewy body dementia but has deteriorated significantly each day. We have been visiting every day, usually twice a day and it is starting to take its toll on me and my brother. They have since increased the dose of olanzapine which is concerning us when we read about LPD and the use of antipsychotic drugs on the Internet. Has anyone any comments on this treatment?

Hi!
My dad has dementia with lewy bodies.
I've been his carer for a few years.
When I looked at the licencing of meds for dlb it was as many have said there is no licenced medication for dlb
However as you know the condition has alzheimers and parkinsonian symptoms. Medication can be given to aide or assist with symptoms from the alzheimers side. This could be cognitive or delusions or hallucinations.
So therefore they are medicating the symptoms not the diagnosis as a whole.
If in a different scenario if someone had parkinsons some have medication and then developed dementia they might have medication.

Obviously I'm not an expert.
My dad did have a sleep disorder that can be part of dlb where they thrash out or have dreams. That too was medicated. For the dlb donepezil and for sleep disorder clonazepam..
The first helps cognitively about 5% and the latter more I think.
I think it's become more obvious from speaking to talking pointers that it can vary from health board or even Dr to Dr.

What's absolutely true is that the fact sheet that I read years ago when it said things can change from minute to minute they weren't kidding!

Best wishes

 

[Janeyjudo]

Thank you

I'm

Hi!
My dad has dementia with lewy bodies.
I've been his carer for a few years.
When I looked at the licencing of meds for dlb it was as many have said there is no licenced medication for dlb
However as you know the condition has alzheimers and parkinsonian symptoms. Medication can be given to aide or assist with symptoms from the alzheimers side. This could be cognitive or delusions or hallucinations.
So therefore they are medicating the symptoms not the diagnosis as a whole.
If in a different scenario if someone had parkinsons some have medication and then developed dementia they might have medication.

Obviously I'm not an expert.
My dad did have a sleep disorder that can be part of dlb where they thrash out or have dreams. That too was medicated. For the dlb donepezil and for sleep disorder clonazepam..
The first helps cognitively about 5% and the latter more I think.
I think it's become more obvious from speaking to talking pointers that it can vary from health board or even Dr to Dr.

What's absolutely true is that the fact sheet that I read years ago when it said things can change from minute to minute they weren't kidding!

Best wishes

Thank you to everyone