Dad is experiencing more extreme hallucinations and I think the Rivastigmine he is on is maybe the cause. He’s been on it for years as well as memantine for dementia (he has advanced dementia - diagnosis Parkinson’s Dementia or maybe is actually Lewy Body Dementia) The Parkinsons tablets really knock him out - he is very ‘normal’ when he wakes up and as soon as he has Parkinsons meds he gets very dopey & zonks out completely and then hallucinations throughout the day. But at the moment they are really bad. There seems to be no other option for combinations of meds as he has parkinsons & dementia. I wondered if anyone else has managed this difficult balance between body and brain - as soon as I reduce his PK meds his mobility gets really bad but on it her is struggling. Sometimes I’ve wondered if its the brand of Rivastigmine that sets him off (its not always the same from the chemist) Any thoughts greatly appreciated
We’re sorry to hear your dad is experiencing this at the moment, we know how hard it can be. You may find the information on this page helpful: Hallucinations and delusions | Parkinson's UK
As with any symptom changes we recommend speaking to his doctor or medical professional first so they can advise on his needs specifically.
If you do need any further information out helpline is always there. Please do give us a call on 0808 800 0303.
Hello @silkie you have just written what my day is like for my wife..
Rivastigmine is for memory in dementia and Parkinson’s .
My wife .. doesn’t have dementia. , even though mental health wants to give her that badge ! Let’s not go there…
To much dopamine will give hallucinations , believe me it’s a fine balance.
My wifes started with olfactory hallucinations back in 2023 , then people in the house now paranoia and delusional.. depends on time of day .
Strange how the Parkinson’s med do this .. my wife is ok at 6.00am before medication after her second one at 9.00 am starting to go strange .
We just wondered if it something else or what if you don’t take the medication. ! I not saying don’t I just wonder
My wife is on rotigotine Patch up until 2025 it was 8 mg , due to hallucinations it was reduced to 2 mg and then no patches with countless visits to hospital due to falls and no mobility .. hallucinations went. But what use is that !
We are now on a 6 mg at least my wife can walk … It a fine balance… And I have to keep my eyes on this every day … We have been told … Not to use the patch … Due to hallucinations .. but there not in my house picking up my wife or driving to the hospital due to falls … 15 to 20 a day
It’s not a once size fits all unfortunately.
There are 2 types of dementia one before Parkinson’s and one after .
Can’t remember which way it is I think it’s just "dementia " before Parkinson’s and L B D after diagnosis of Parkinson’s
sorry I know how much your going through … It gets very hard when someone believes what there seeing. When you / me can’t see it , a real pain every day making dinner for 6 , when there completely haveing a discussion to someone that’s not there apparently I have had lots of women around for s$x. Parties , every day someone is on the bed and my wife will not get into it … Everyday…
Hope this has a little help. Be strong… Your not alone…
I’m interested in your comment ‘ my wife doesn’t have Dementia, even though mental health have given that label.
My hwp had a very bad 2025. Full on Hallucinations, paranoia, delusions. The effects were horrendous and put us both at risk while assorted ‘ services, gp, pd nurses, tried to work out how to manage this. Eventually he was hospitalised in a mental health elderly(68) admission unit. The obvious things were done. Bloods uti screen, removal( abruptly) of two add in drugs, ie ropinerole and opicapone. Alongside adding in two drugs to treat the hallucinations and paranoia. You can imagine the effect this had on anyone with pd. Dont get me wrong, it was a difficult ‘case’ to diagnose and symptoms were alarming at times. 6 months in hospital then home with an early stage pd dementia’ diagnosis.
However, in hospital, all meds were given with meals, mobility and motor skills were all terrible, plus the add in drugs sedated badly. In hospital he was ‘frozen ‘ half the day, discharged with a wheelchair, and it was really hard to manage at home.
However, once I had control over meds and diet, no wheel chair required. We are now only on madopar. I year later. No hallucinations or paranoia. I’ve halved the meds that caused sedation( in consult with Dr). So far, no hallucinations or paranoia has returned. I personally don’t see Dementia. Mild cognitive impairment is there. He has definately had a decline in pd control of symptoms, but there are so many facets to pd symptom management that not everyone gets right.
Who knows how long this ‘stable period’ will last. I say, trust your instincts alongside engaging with those that understand the condition best. That would be the patient, their carer, and most involved Parkinsons specialist
Hello @Jandc … A quick reply for now. My wife was suffering bad hallucinations told it was to much dopamine .. rotigotine Patch at 8 mg in 2 months it was removed completely… My wife could not move no mobility , slept all day and couldn’t talk …
Was given a walking frame and some tablets for memory ..
Then our local PD team decided .. it stead of reversing what had been done .. no they sent her for a dementia test , now she had no dopamine at all her score was 44/100 dementia .
I complained , we reinstated the patch at 6 mg. Waited 4 weeks had another ACE 111 test. 88/100. Told it was MCI ok .
This year 6 mg patch. Medication was on/off could not understand why .. but at this time mental health ask for another test .. 72/98 dementia in Parkinson’s ..
I questioned the score and found the test was not done correctly. Buy the doctor .. the dementia diagnosis has been removed from her records. After I complained and proved my point .
We are now being denied some treatment as it’s still showing dementia on the record somewhere ..
Thanks so much for your thoughts. Its so hard isn’t it, such a difficult balance. I think I’m going to see if they can reduce the PK meds overall and see what happens …
Hello @silkie .. sometimes it’s easier to adjust the medication yourself … The PD nurses. Do not know your body like you do! Just go one step at a time. One medication at a time … Note the effects. Every day … Give it a week or two .
We have completely gone against what our PD team have said… They do not want us to reinstate the rotigotine patch .. and told us so .. we have proof that our theory works my wife .. walks. And talks .
Hello @silkie , just remembered one of the medications for dementia stops the prodtion of dopamine .. now that is counterproductive … When you need dopamine ! Ill try looking it up once more …
Hello @Jandc …
6 months in hospital then home with an early stage pd dementia’ diagnosis.
A couple of questions.. were you at the hospital when the test for dementia was done !
Was the Parkinson’s medication working properly when the test was done , lack of dopamine will effect cognitive function. As in a good score or a bad one .
In hospital for a reason , unwell.. ! according to dementia UK , all medication should be working and correcting , no pain , if the patient needs glass they should be used .
So 2 of the above were not taken into account…
If a ACE lll. test was done any part of it can be refused.
There is. No one test for dementia…
You can ask mental health for a retest at any time. Don’t be afraid too .
Parkinson’s meds with food. , is a no no if it’s protein based.
Remember the ward nurses just go by what they told .. you need to supply the Parkinson’s medication.. and tell the. - on time -
Actually you are right. The whole time my hwp was in hospital his parkinsons meds were all badly timed. For context though, I have to add he was admitted due to hallucinations, delusions, and other behaviours. Prior to admission he had abrupt removal of ropinerole and opicapone. What this did was almost immobilise him. And for a few weeks he still had these terrible symptoms, then, he was left only on the madopar. Always given with food, scant management of bowel function, therefore constipation. Leading to poor uplift of what little meds he had left. Confusional states most times we visited. I wasn’t allowed to stay in during any of the testing. All brain scans and ct were normal. Dementia was the default diagnosis because they didn’t find anything else. They started quetiapine at night. And another med I’ve since forgotten. It flattened his responses at night, coupled with no mobility due to pd med changes and poor uplift.
I’ve since halved the dose of quetiapine and he is much more alert. No hallucinations or delusions. I think it’s possible pd dementia may be looming. But it’s not there yet. I may yet take your advice and ask for retesting of mental state. There have been difficult times during hospital stay, it was frightening at times, my main gripe was nursing staff didn’t believe the protein factor affected meds, and also got annoyed when he suddenly couldn’t walk having been mobile first thing. He is so much better now he is home. Sadly the first news from the pd clinic was we are on annual check ups instead of six monthly..sign of the times.
an antidepressant effect of a medication that is expected to further reduce dopamine system activity seems paradoxical. In the present paper we used electrophysiological single unit recordings of identified VTA dopamine neurons to characterize the impact of acute and repeated administration of the D2RA quetiapine at antidepressant doses in non-stressed rats and those exposed to the chronic mild stress (
I’ve read that paper, and others. They can be complicated to understand, but the ‘theory’ is it reduces any psychotic type behaviours. All this comes at a price of side effects. It’s all about individual balance of effects. I don’t think the medical profession are great at ‘individual’ care. For now, we are happy on 10mg dose.i monitor it daily. Parkinsons just keeps giving…
Hello @Jandc your probably the same age as my wife. I’m 68 , one thing that I can see in you case and my wifes . . And more … !
So I’m in Lincolnshire, was in Northamptonshire both seam to do the same thing .. I would imagine it’s UK wide .
once the hallucinations start = to much dopamine / progress - the answer from PD nurses is to remove all the dopamine DA which ever tablets/ patches .
This leaves the patients unable to move. Loss of mobility. … I had 3 months of this months at home … ! Wonderful. Not …
The PD nurses answer to this is … Send to mental health… Must be something else wrong … Wipeing there hands of the patient . Not our problem anymore.
It stead or back tracking and slowly reintroduced the medication or another form of tablet .
Just not making sense to me one less Parkinson’s patient. One more dementia case …
We saw the PD consultant last week , he said .. my wife is showing. No sign of dementia… And he was concerned why the test was ever carried out. Not just one … But 3 times.
Jealous you have a pd consultant ! Cases sound very similar. Because of hallucinations etc, on discharge we had to push hard for more madopar. Other meds won’t be considered again. It’s helped…a tiny bit, but I need to be 100% on the ball with timing, food, and gut motility. Same age..
