Lewy bodies - from really good to really confused

[evz1976]

Hello - my second post.

My mum - 70 years old - has Lewy Body Dementia.

She is on 6mg of rivastigmine. She tried to get to 9mg - the target dose - but experienced side effects such as shaking etc.

Last week, in the immediate aftermath of coming off the 9mg, she was excellent. She was great for six days.

And then on Saturday she became very confused and agitated. She seems to have this Capgras syndrome and is obsessing about the 'other man', who is not my dad.

Any thoughts as to the drugs and how we can get her up to 9mg? Or consider another path - maybe the patches?

Hopefully speaking with the Dr on Weds.

Vacillating between sadness, anger and bemusement.

Simon.

 

[Cat27]

Have you checked if she’s got a UTI?

 

[nitram]

Agree with checking for UTI

Have you considered appropriately playing along with the capgras type events?
They are real for her, agree they are real, this could reduce her agitation without recourse to medication

 

[Mandy76]

My mother also has Dementia with Lewy Bodies and is on Rivastigmine. She is on the patches. She is on the 4.5mg patch. They tried putting her up to 9mg but they said that she has a slow pulse rate so cannot go onto the higher dose in case it makes her pulse worse, so she will forever be on the 4.5mg. She was on the 9mg for a few days and had no side effects, and has had none on the lower dose.

But it's not made a bit of difference - her mental state is declining day by day at a rapid rate.

My mother also has Capgras syndrome and the advice for that is to go along with it and for the 'impostor' to leave the room and give the person time to calm down.

Supposedly fluctuations in confusion levels is part of the condition. Sometimes my mother is in a terrible state and we are on the verge of calling an ambulance, but then she is back to okay again an hour or so later.

 

[Paul H]

Hello - my second post.

My mum - 70 years old - has Lewy Body Dementia.

She is on 6mg of rivastigmine. She tried to get to 9mg - the target dose - but experienced side effects such as shaking etc.

Last week, in the immediate aftermath of coming off the 9mg, she was excellent. She was great for six days.

And then on Saturday she became very confused and agitated. She seems to have this Capgras syndrome and is obsessing about the 'other man', who is not my dad.

Any thoughts as to the drugs and how we can get her up to 9mg? Or consider another path - maybe the patches?

Hopefully speaking with the Dr on Weds.

Vacillating between sadness, anger and bemusement.

Simon.

My wife has Lewy Body Dementia. She could not take tablets as they made her violently sick now on patches 9.6 all ok less hallucinations. But she still talks to me about the other Paul and it is quite hurtful sometimes

 

[Paul H]

My mother also has Dementia with Lewy Bodies and is on Rivastigmine. She is on the patches. She is on the 4.5mg patch. They tried putting her up to 9mg but they said that she has a slow pulse rate so cannot go onto the higher dose in case it makes her pulse worse, so she will forever be on the 4.5mg. She was on the 9mg for a few days and had no side effects, and has had none on the lower dose.

But it's not made a bit of difference - her mental state is declining day by day at a rapid rate.

My mother also has Capgras syndrome and the advice for that is to go along with it and for the 'impostor' to leave the room and give the person time to calm down.

Supposedly fluctuations in confusion levels is part of the condition. Sometimes my mother is in a terrible state and we are on the verge of calling an ambulance, but then she is back to okay again an hour or so later.

My wife is the same but on 9.6 it's quite upsetting

 

[canary]

I didnt think rivastigmine worked for LBD, I thought it only worked for Alzheimers.
I guess doctors try it it out, just in case, but if she cant tolerate it Im not sure how much she is actually losing out.