My husband was diagnosed with PD 11 years ago, and a year ago was diagnosed as having mild cognitive impairment. This seems to have accelerated somewhat; we are in the loop with the memory clinic and they have suggested that he may have early stages of PD dementia, and have a nurse coming out next week to discuss medication. My mother died eighteen months ago with vascular dementia and I know something about how that progresses, but I can’t find info on how PD dementia behaves or progresses. Anyone…?
Hi @Giffy,
We are sorry to hear about the difficulties you’ve been having and please accept our condolences. You may find this Dementia information on our website helpful for you and your husband. Our Helpline specialists are also able to advise you on all aspects of Parkinson’s and would be happy to talk this through with you. Please feel free to call on 0808 800 0303. We hope this is useful for you.
Best wishes,
Edwina
Moderation Team
Hello12
Hello, my husband was diagnosed with PD in 2012. About four years ago his concentration and processing of information was becoming less good. We were sent for memory testing and various scans. At the end of all this he was given a diagnosis of Lewy Body dementia. Not uncommon in PD. The way it differs from other kinds of dementia is that my husband has hallucinations and delusions. His memory is not so much affected. I wish you well. C.
Very similar here. Lengthy process of assessment by memory clinic resulting in PDD diagnosis once OH was willing to consider that. Meds gradually increased to maximum ( Rivastigmine) and then transferred to CMHT for annual visits ( what’s the point of that?) .
What I have noticed, more than memory loss ( in some ways no worse than my own which is a bit scary) is the cognitive processing issues. My OH knows what he wants to do and tries to do it but gets into a mess and a muddle and doesn’t seem to realise how or why and sometimes doesn’t seem to notice despite the chaos that results. He struggles to manage routine tasks ( but tries them anyway which is the problem if I don’t notice what he is up to), and so really needs watching 24/ 7 which is, at home, impossible or at least extremely difficult and he resents any help or interference as he sees it. And of course there are unpredictable moments when he is more or less ok, relatively speaking.
Is more confused at night which is a problem if and when he is able to get out of bed and has led to my keeping the door to downstairs loo and garage locked at night and then the use of an alarmed floor mat which alerts me if he comes out of his bedroom. I would strongly recommend getting one ( our local social services telecare department provided it…I think it was) it Is hard to reason with him at that hour because in his mind it is perfectly reasonable to be getting food or getting dressed or whatever and he does not respond well to being encouraged to do otherwise ( though of course no problem him having something to eat if he wants it).
Sadly various things have been damaged / destroyed as a result of his inability to think through what he is doing, so I am gradually trying to preempt that by removing anything that matters, but it is hard to predict what his attention will focus on and am not yet ready to live in a totally bare home myself.
The combination of PD and the dementia makes it more complicated, and for reasons I won’t go into, make me consider having laminate flooring put in throughout downstairs.
Sorry if that all sounds rather grim…I just wanted to give you an idea of what it might be like…forewarned is forearmed as they say. Anything that helps to avoid problems in the first place makes life much easier than dealing with them once they have happened…but I am a slow learner and keep getting caught out by the next unexpected thing. You can easily find articles online about dementia proofing your house.
Wishing you strength and courage,
Pippa
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My husband has been diagnosed with dementia during the first lock down. I can identify with some of the points you have covered. We have recently got a carer one day a week but I came home this week to find something damaged. How are you managing during the lockdown restrictions? My husband seems totally unaware of the changes in his behaviour. We have been married over 30 years and it rips your heart out not being able to discuss things in the same way anymore for fear of him going off at a tangent. He gets fixated on certain subjects and I just have to keep distracting him - it is quite exhausting. Any advice? thanks Sally
Hi @SallyJ
I wish there were some easy answers but given the nature of dementia I don’t think there are. Any carer in this situation has to adapt somehow to ever changing mood, ability, activity and comprehension level and when one is used to having a mutually supportive, reciprocal relationship with a husband or wife, it can be incredible difficult to adjust to such a fundamental change in them, quite apart from the practical side of things. The PWD’s lack of insight can be hugely frustrating when it manifests as being argumentative and unreasonable. As you so powerfully describe, it rips your heart out, witnessing a loved one deteriorate in such a way.
Am reluctant to offer “ advice” because situations are so specific, but in the spirit of the advice from children about parents which includes things like, “don’t let your mum brush your hair when she is angry”, or “you cannot hide sprouts in a glass of milk” …I offer the following
Put washable runner style rugs in high risk (of spills) areas, if the carpet cannot be replaced with laminate or vinyl or some such .
Use mugs with lids
Remove any object that you want to stay intact.
Find out if your local authority offer a Telecare service. Ours provide a variety of “ Med Page” alarms ( to alert carers to a fall), pagers etc which can be really helpful. Also available to purchase online.
The Disabled Living Foundation ( www.dlf.org.uk) is a great source of advice and equipment, linking to “ Living made easy” (www.livingmadeeasy.org.uk ) which is a comparison site for products. Easy to get swamped by all that is out there, so one needs to be selective and do a little at a time , but I have found those two sites the best place to start.
Worth bearing in mind ( when you have the time and energy and lockdown is lifted) that your GP could refer your husband to the Community Neuro Rehabilitation Team and the Community Mental Health Team., both of which are multi disciplinary teams, so lots of different expertise available.
You can get an independent living assessment by an Occupational Therapist via Social Services - Adult Care. ( I completed a lengthy application form online) They can advise on aids to help dressing, mobility, beds etc and may provide some items for free ( toilet seat raisers, walking frames etc, possibly a stairlift) .
You have to keep asking and being pro active, which can be draining, but it is the way the system works. I try to remember that if we lived somewhere like Uganda, almost nothing and no one would be available unless we could pay…that makes waiting a little easier.
And finally, activities…such a hard one. Maybe someone else will come up with some ideas. I find it almost impossible to engage my husband in any activity other than the endless pottering and mindless sorting out of things that he does. It is much better when we are out of the house, in the car or wheelchair and that seems to improve his cognitive state.
Best wishes,
Pippa
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Hi @SallyJ, 
A warm welcome to the forum.
I’m glad you’ve already heard from @Tot, she has given you a lot of great advice and I definitely empathise with you and your husband. I just thought I’d chime in to let you know that we have a lot of information about Dementia on the Parkinson’s UK website which will be of great benefit to you as it has a lot of helpful information. You can find this here: https://www.parkinsons.org.uk/information-and-support/dementia
We also have a free and confidential helpline with a team of amazing advisers who are here to support you and your husband in any way they can. Please feel free to give them a call on 0808 800 0303 or email at [email protected].
Best wishes,
Reah
Hi Reah - I took your advice and rang the helpline and I spoke at length with a nurse and it was such a relief to speak to a professional who identified with what we are going through. She gave me some excellent advice and I have since followed up with my husband’s parkinson’s nurse. I have also had help from the Admiral Nurse helpline 0800 888 6678. I had to try both helplines a few times as they were both busy but I am glad I perservered.
Hi Pippa - thank you for your advice. I am sorry I have not replied sooner. You gave some good tips which I have been following up on. We are getting some help also from a social worker. One of my husband’s symptoms is something called Cap Gras Syndrome which I have never heard of when he does not know me, which can last for hours. All very distressing made worse with the conditions and isolation that lockdown brings.
Best Wishes
Sally