Dementia, hallucinations, confusion

My partner has had Parkinson’s for 17 years and had DBS a few years ago with good results. Unfortunately since the lock down he has started having hallucinations and was very confused, which then led to periods of not knowing me and getting quite distressed. He also went missing. He has been prescribed Alzest which has resulted in him being calmer. Infection was ruled out early on. His parkinson’s medication has been reduced and the hallucinations are not as bad but he now has more off periods. Does anyone have any experience of this please. It has all been very distressing. He was only in his 40s when dx so he is still quite young. Looking back I can see there were some cognitive changes but this has all come on so fast sadly. I take my hat off to other people with parkinson’s and their carers out there coping under lock down without the normal networks. thanks Maggie

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Hi @Maggieone,
It is such a tough one, getting the right balance of medication so that it “ works” but does not have too many side effects. It doesn’t seem like you can have one without the other. I hear the helplessness in your voice to do any more to ease your partner’s suffering…or may be I am projecting my own…it is a really hard part of being a carer…not being able to do more to make things better and just having to trust in the medication and those who prescribe it to know what is best . It is not an exact science and it seems that every body ( literally) reacts differently.
Your focus in your post is very much on your partner, but as a carer myself what I pick up on between the lines is how bad it must be for you, witnessing his pain and distress, dealing with everything you have to deal with at a practical level, for so many years, and if that wasn’t enough and sometimes too much, having to deal with the emotional challenges and stress, including now of not being recognised ( your identity as his partner vanishing…how is that possible? …but it happens) and of his going missing…how scary that must have been, and worrying that it might happen again and how to prevent that, and so on and so on. You must take care of yourself too, finding some way to have some head space for yourself, doing whatever it is that enables you to switch off from your caring role and recharging, refuelling…even just for a few minutes or longer if possible .
Thinking of you, yet another hero!
Pippa

Dear @Maggieone

Sorry to hear about the difficulties with hallucinations and disorientation that you and your partner have been experiencing since lockdown. Whilst we can’t be sure of the specific reasons people might be having these difficulties more during lockdown, increased stress and worry can play a part in increasing Parkinson’s symptoms. It sounds like you’re doing all the right things by reaching out to his healthcare professionals to assess him and check his medication.

Our Helpline and Local Adviser Service are also here to support you with practical and emotional support, and we have dedicated Nurse Advisers as part of the helpline team.

In addition to the information in our Hallucinations and Delusions factsheet we also have put together some additional advice on managing these symptoms:

  • Stimulating activities can help distract someone away from their hallucination

  • Encourage good sleep habits

  • Consider their environment - ensure adequate lighting to decrease misinterpretations of shadows and removal/covering of objects from which hallucinations may emerge

  • As far as possible, encourage a healthy lifestyle – for example regular eating and fluids and exercise

  • It is important not to argue with the person experiencing the hallucination, e.g. denying what they areseeing as real. It is advised to acknowledge and distract rather than engage/join in.

  • Try having a pre-agreed ‘code’ using familiar objects to re-orientate the person in case of family member/carer misidentification e.g. a specific ring, necklace etc

There also services dedicated to supporting carers across the UK, and many are still providing telephone and other support during Covid-19. You can find details of your local carers support service on the Carers UK website here

Warm regards,

David
Forum Moderation Team

Thank you Pippa - what a lovely thoughtful reply.

Hi @maggieone
I have just joined the forum here for exactly the same reason as you. My wife was diagnosed 14 years ago. Things have been good and my wife continued to work part time, however the last six months has seen a rapid development of the new symptoms of hallucinations and mild to moderate dementia. This has led to episodes of psychosis where, unfortunately my wife lost touch with reality for short periods of around an hour.
We have two adult daughters still at home and they have been a great help. It is very difficult getting this problem addressed in a helpful way, and I think the lockdown situation makes things worse for our partners. The lockdown has also meant we have not had any face to face consultations, only telephone.
So far my wife’s consultant has prescribe Quetipine, a common drug which reduces the anxiety caused by the hallucinations and dementia confusion.No reduction in Parkinson’s drugs. My wife has not had a formal diagnosis of dementia as NHS services and GP seem reluctant to go about getting a dementia diagnosis on top of Parkinson’s, they seem wary of treading on the Neurologists toes. This may be an impression rather than fact. I feel a dementia diagnosis would be helpful in getting access to appropriate support. I have been really knocked back by how quickly this has happened and just what changes have taken place so you are not alone in feeling a bit “dazed and confused”

While I cannot disagree with any of the things David the Mod has suggested they only take you a short time to exhaust and Parkinson’s local advisors are not clinicians. What I would like is support and advice to keep my wife engaged in activity she can do and enjoys. This is not easy when a person has poor memory, weak sequencing, weak motor control and distracting hallucinations that can tip over into psychosis if not distracted at an early moment. From an active independent women, to a woman I can no longer leave on her own, all in six months. I’ll try to post here how things develop. At the moment I am looking at our GP to refer my wife to our local EMDASS NHS team who help with older peoples mental health. My wife is just 64.
Any further advice or information from forum members welcome.

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Hi newton28

I would be inclined to push a bit harder for a dementia assessment from your local “memory clinic” (if that is what they are called nationwide) - linked to the Community Mental Health Team, via your GP, because that way your wife, if diagnosed, can access medication which can help to slow the progression of this awful disease. I thought the idea was that professionals worked together as a multi disciplinary team around the patient, rather than feeling like anyone is treading on anyone else’s toes. Of course Parkinson’s drugs can cause confusion and other mental issues as well, as I am sure you are aware, and it can be difficult to get the right balance between movement and mental capacity - a certain trade off seems the norm.
Apart from access to medication and the CMHT, which may or may not be worth anything - round here it is an annual phone call - and some activity groups if they are run - other dementia based groups which are run by charities or volunteers - singing, dancing, cafes, etc are open to anyone regardless of diagnosis. Apologies if I am stating the obvious.
As important if not more so, is for you to have time off - daily if possible.

regards,
Pippa

My husband regularly sees people in the garden - of all ages and will ask what are they doing - sometimes out of curiosity but sometimes with concern. So far I have taken the tack of gently telling and reassuring him that they are not there because to go along with the delusion would seem to cause more anxiety about what “they” might do, and so far he accepts that. Having said which, it is not always easy to know when he is in a delusory state of mind unless he asks me a question - like " How often do you come here?" - which never fails to bring me up short.

Has anyone watched A Beautiful Mind , or Shutter Island ? - both very powerful depictions of what it is like to have hallucinations - but you might have to be in a strong place to watch them.

Pippa

To all on this thread, if you want to jumpstart the brain & clear away the daily PD fog, I seriously recommend Ambroxol, as that is exactly what it does for me. My neurologist has no problems with me taking it close to the recently completed phase 2 trial dose, and according to the published trial findings, it is well tolerated (other than the taste, which is a bit harsh so I recommend having some of your favorite chocolate around). I still take Acetyl L-Carnatine to help mitigate future dementia concerns, but now I’ve added what I think is the most powerful brain management tool for me yet - Ambroxol - until something even better comes along (which in my PD case I’m not waiting for. as we all know every day counts in slowing its progression).

I believe there is another trial underway titled “Ambroxol as a Novel Disease Modifying Treatment for Parkinson’s Disease Dementia” (you can search on it); and based on the January 2020 published positive results of the completed phase 2 trial “Ambroxol in Disease Modification in Parkinson Disease”, and my experience in taking it for the past 6 months, I think this second trial will also have positive results. Al I can say is that slowing the progression sooner rather than later is absolutely critical for me, so starting on Ambroxol now has had only upside for me - I think there are alot of PD patients out there who don’t want to wait 2 more years to take a cough medicine that could help slow or even halt their PD, which is what Ambroxol has been primarily used for, until now that is. But as most would advocate, do your own research and talk to your doctor, but if they have little concern about taking it and think the completed trial findings have merit, well, perhaps it will be of some (or a lot of) help to you too.

I’m so sorry to hear about your husband’s decline. As others have said, I would definitely push for a dementia diagnosis. It’s important to know if this is a dementia like Alzheimer’s or whether it is Parkinson’s Dementia, and it’s my understanding they present differently so this shouldn’t be too difficult. My husband has PD and Parkinson’s Dementia. We are lucky to live in London where there is a lot of help available, but it did take me pushing for a change of consultant - to someone specialising in cognitive impairment in PD - to finally get to the most appropriate person to deal with my husband’s condition. He is now on a drug called Donepezil (alongside his Sinemet and Duloxetine) which is designed to slow down the progression of dementia. And it seems to be doing a good job.
As far as hallucinations go, he was getting them all the time at one point, but having read up on another drug he was taking at that time - Pramipraxole - I realised hallucinations were a possible side effect (obviously not for everyone). The consultant agreed to take him off it to see if it made any difference and - whether coincidentally or not, who knows - the hallucinations almost entirely stopped.
He also suffered a period of not knowing who I was, which was deeply upsetting. Thankfully this passed, which I understand from the consultant is not uncommon.
My heart goes out to you and I hope you manage to get some help and support.

You should speak with your consultant about Ambroxol, early trial results for it in PD have been very promising, and it is currently in a trial for PD dementia, which I believe will have positive findings published next year sometime. Here is a link to that Ambroxol for PD dementia trial information. I have been using it for over year now with solid cognitive results to-date, i.e. very clear-headed with no return of PD brain fog, and much reduced freezing.

https://www.centerwatch.com/clinical-trials/listings/168579/parkinsons-disease-dementia-ambroxol-as-treatment-parkinsons/

Hi my husband was diagnosed back in November with Lewy body dementia when he was in hospital after having hallucinations. When he was let back home he went to see Parkinson’s and they said it’s parkinsons dementia. They told me the only difference from one to the other is his age as he has had Parkinson’s since 2013 and his age is 57 . He is on riverstigmyene patches which seem to be working well at the moment

Suggest you stay tuned to the results of the trial of Ambroxol for PD dementia next year (link below), it could do even more for your husband if it is a successful as I believe it will be based on my experience with it.

https://www.centerwatch.com/clinical-trials/listings/168579/parkinsons-disease-dementia-ambroxol-as-treatment-parkinsons/