How does Parkinson's dementia progress?

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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