Hello all, it has been suggested that my husband could take Rivastigmine as he’s been diagnosed with Parkinson’s dementia. He has had assessments by the memory clinic and their findings were he has a form of dementia linked to PD. It’s not too bad at the moment just the odd confusion and small things I’d began to notice him saying that don’t quite ‘sound right’. I realised he had a problem a while back and we spoke to our neurologlist, hence the referral to the memory clinic. They have said that as he’s not long had a change in his PD meds, to delay starting this drug for the time being. We will have another appointment with the clinic in two months to see how he’s doing then he can begin to take the Rivastigmine. Then it’s a case of seeing if it benefits him. If he has any adverse side effects then he will simply be taken off it. Hoping to hear from anyone who’s had experience of this drug for PD dementia. My husband was diagnosed 8 years ago, aged 65. Many thanks, Jean.
Hello Jean1. I take rivastigmine. I use the 9.5mg patches, 2 years now. So far as I can tell, the only effect is that I have terrible irritation reactions to the patches. I don’t know anyone else who takes it so I am as interested as you to hear from others.
Hello NeilT, and thanks for your reply. Patches weren’t mentioned by the memory clinic nurse. I was under the impression the med would be in tablet form. As I mentioned, he hasn’t started to take it as yet as he’s not long had a change in his PD meds. Have you found they have helped with memory and other cognitive issues that they were prescribed for? Sometimes the side effects from medication outweighs the benefit seen from the drug so I’d like to learn more about this before he starts taking it. However, I trust the memory clinic’s assessment and the assertion that the drug can help slow down the symptoms of PD dementia. It’s a tricky one, as he’s not too bad at the moment, but I’d hate to deprive him of a drug that could help him with this distressing symptom of Parkinson’s, and even slow it down. I hope others will see our posts and jump on board now and share their experience of the drug. Best wishes, Jean
Hi Jean1, it’s only based on subjective observation but yes, rivastigmine helps. And I would also recommend starting sooner rather than later. N
Hi NeilT, thanks for that. I’m going to get in touch with PD nurse so the med can be prescribed. As you say if it helps, then better to start on it now. I suppose my main concern was if it would have any adverse effects on his PD meds, (Sinemet and just recently Safinamide) he also takes Clonazapem to help with the nights which has been a godsend so I’m naturally wary of adding anything which may disrupt his sleep! Have you found the Rivastigmine causes any night time issues? Thanks again, Jean
Hello all, just another call out to anyone who is taking Rivastigmine. I’m going to get our GP to get him his prescription as authorised by the memory clinic nurse who assessed him and said he may find it helps with PD dementia. Thank you NeilT for your input. Any other advice from maybe carers who have noticed improvements in their partner’s cognivity would be greatly appreciated. I’m concerned about my husband’s increasing lack of conversation and general cognitive issues along with apathy which appears to be the case most days. I hope some good will come from yet another drug addition to his daily cocktail of meds. I’m quite concerned about yet more side effects but I suppose there’s only one way to find out… Jean
Hi Jean, sorry I’ve been quiet this last month. I’ve not noticed any problems with rivastigmine, except the patches trigger my dermatitis. I’m taking capsules now which gets round that. Do they help? My wife thinks so and that is objective as it gets. I hope it helps your husband
N
Thanks Neil, we are seeing the memory clinic nurse next month for a review then he’ll possibly start on Rivastigmine. I really hope it will benefit him… Glad to hear that it appears to be helping you. Long may that continue! Best wishes Jean
Husband got put on Rivastigmine 8 months ago for Parkinsons dementia. It made him calmer and more reasonable, but has done nothing for his memory, it can only try to preserve memory, it doesn’t bring it back. Other elements of dementia, eg communication, sequencing, multitasking, new learning, may still decline. Rivastigmine can safely be taken with Madopar (cobeneldopa ). I checked with the Psychiatrist, the pharmacist and on reputable medical siyes on the internet
I’ve e been told Rivastigmine patches are usually prescribed when taking regular capsules or tablets might be a problem (swallowing difficulties, unable to manipulate the tiny tablets or capsules, unable to remember to take them reliably even when prompted).
Hello, I haven’t posted for a while on this subject, but I’d like some input from anyone who has been taking Rivastigmine for Parkinson’s dementia (ideally I’d like to hear from their carers).
My husband was diagnosed with PD dementia a couple of years ago. Rivastigmine was suggested by the PD nurse at the time. He was reluctant to start it as he, like most people with PD, was already taking quite a lot of medication. Plus he didn’t think he needed it at that point, so I left the decision to him…
About a year ago he did start taking it at a very low dose (3mgs) and stayed on this until about four months ago when it was increased to 3mgs x 2 daily. I have been observing him closely since the increase in meds, to see if he seems to be benefiting from the drug, and sadly, my honest opinion is I don’t think he is. Indeed I’m not totally sure it may even be making his PD worse.
I realise it is extremely difficult to pinpoint whether it’s the drug or the inevitable decline in his symptoms as his PD progresses.
I’ll be getting in touch with the PD nurse asap but just thought I’d reach out on the forum to see if anyone is/has faced the same dilemma. Best wishes to you all, Jean
Hello Jean
My husband was diagnosed with PD 3 years ago, and with “probable” Lewy Body dementia about 18 months ago. He had had cognitive issues for a while (memory and processing issues mostly) but then started having hallucinations and paranoid delusions, which led to this diagnosis. He was prescribed Rivastigmine to help with these new symptoms. He built up to 2 x 6mg capsules a day. During the staged introduction, we found that his PD symptoms became worse, but this gradually eased, as did the hallucinations and delusions. About 9 months ago, he suddenly became worse again, having hallucinations (hearing voices during the night, interpreting ordinary objects as something sinister) and worrying about “security issues” like whether our passports were still in their usual place. He was prescribed Memantine to help with this, and again we found that his PD symptoms worsened when he started taking it but that this wore off after a few weeks. I am absolutely sure that both medications have helped with his cognitive problems. He does still have memory issues, and the occasional hallucination/delusion, but the latter tends to happen when he’s stressed, tired, dehydrated or a mix of these.
I hope this is helpful. Good luck to you both
Hello
My husband was also diagnosed with PD almost 3 years ago but has obviously had it a lot longer. He has Madopar 4 times a day 25/100. At the beginning of this year he started having hallucinations and was prescribed rivastigmine patch 4.5mg in February. Since then his hallucinations have got worse day by day. He doesn’t recognise me as his wife of 56 years which is very distressing. He sees other people in the house, closes all the curtains around 7:00pm to keep “them” out. Tonight won’t even allow me to watch TV with him, considers me as an imposter. The PD nurse asked our GP to prescribe the 9mg rivastigmine patch. I will now have to wait about another 6 weeks before we know if this new prescription works or not.
Hi, FRANH. I’m so sorry to hear what you and your husband are going through. It’s incredibly distressing when hallucinations become part of the experience, especially when they affect such fundamental things like recognising loved ones. It must be really hard for both of you, and it’s understandable that this is causing you both so much distress.
It’s good to hear that your Parkinson’s nurse is working with you and your GP to adjust the treatment, but I know how tough it is to wait for things to improve. In the meantime, I hope you’re able to find some moments of support and comfort for yourself as you navigate this challenging situation. You’re doing everything you can, and your patience and care are so admirable. You’re not alone in this - many people here understand how difficult this can be, and we’re all here to support you.
Please know that you can call our free, confidential helpline for support and advice: 0808 800 0303. Our trained experts and specialist nurses are on hand anytime between 9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays.
Sending you and your husband strength during this time 
Parkinson’s UK Moderation Team
Thank you. Well he has turfed me out of the bedroom tonight . I have not been able to convince him that I am his wife. Not able to reason with him. Will try to call your helpline tomorrow morning. Failing that will try to get in touch with PD nurse Monday.
Thank you both for your helpful replies on this topic.
I am going to contact the PD nurse on Monday and ask if increasing his dosage will be more beneficial in treating the dementia (he’s currently taking 2x3mgs twice a day with food).
I’m thankful that at the moment he isn’t displaying any of the worrying symptoms mentioned by you both, and my heart goes out to you FranH as it sounds so distressing to hear what you’re going through. I reallyhope things will improve for you very soon. And to MrsVice, I’m glad to hear you eventually have had more positive experiences with this drug.
My best wishes to you both. Take care, Jean
Hello Franh
I’m so sorry to hear what is happening to you and your husband. We had very similar issues before my husband was diagnosed with Lewy Body dementia. Slight difference: my husband thought that there were two of me - one who was his wife, and the other who was his carer. If we went out for a walk, he would ask me “Why isn’t the other Mrs Vice coming with us?” Rivastigmine sorted that out for about 6 months. Then we had another couple of months of hallucinations/paranoia until he was established on Memantine in addition to Rivastigmine. Currently mentally fairly stable, but physically not so great…
I hope that things improve for you and your husband
Mrs Vice