Lewy Body Dementia diagnosis query

Candice Marie

New member
Feb 1, 2024
6
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My dad was diagnosed with Lewy Body Dementia by a Consultant Psychiatrist in early 2020. He was then seen by a Consultant Neurologist a couple of weeks later who said that he thought Dad was Parkinsonian and that he agreed with the diagnosis of Dementia with Lewy bodies.

The Lewy Body Society website says that "Lewy body dementia refers to both ‘Dementia with Lewy bodies’ and ‘Parkinson’s dementia’. They are caused by the same disease process and are distinguished by the timing of the onset of symptoms."

What I'm having difficulty understanding is whether Dad has Dementia with Lewy bodies or Parkinson's Dementia, especially as the Neurologist said that he's Parkinsonian.

His hallucinations started before his cognitive decline I would say, but his mobility problems and tremors probably started afterwards. I suppose it's a bit late in the day to be querying this, but I'm only now starting to take stock of all the paperwork we had referring to his medical history and putting it in order.

Dad's memory is really good when he's talking about the past. He remembers names, addresses, events and places he's been. He's talking about things that he's never mentioned before. His short term memory isn't terrible either, but he does confuse days and has recently started to need more help with taking his medication at the right time. However, he can visualise in his head where roads are in our town and direct you to them and also tell you where certain places are in the UK. His language is good although he does sometimes slur his speech and his voice can be quite weak.

His mobility is pretty bad, but he can still moved around - it's his mobility that has deteriorated more than his memory these last few years. His shaking has got worse.

The confusion for me arises because of the use of the word 'Parkinsonian.' Does anyone on this forum have any insight into this or should I just go back to the original Consultants who diagnosed in 2020?
 

canary

Registered User
Feb 25, 2014
25,048
0
South coast
Does it really matter which label you put on it @Candice Marie ?

Dementia with Lewy Bodies (DLB) and Parkinsons Dementia are two ends of the same spectrum and as the disease progresses become more and more alike with both physical problems of Parkinsons and cognitive decline of dementia.

Saying that someone is "Parkinsonian" is a very general term which means that they have symptoms of Parkinsons, but can also cover Lewy Body Dementia

Id stick to saying its Lewy Body Dementia, if it were me
 

maisiecat

Registered User
Oct 12, 2023
321
0
My dad was diagnosed with Lewy Body Dementia by a Consultant Psychiatrist in early 2020. He was then seen by a Consultant Neurologist a couple of weeks later who said that he thought Dad was Parkinsonian and that he agreed with the diagnosis of Dementia with Lewy bodies.

The Lewy Body Society website says that "Lewy body dementia refers to both ‘Dementia with Lewy bodies’ and ‘Parkinson’s dementia’. They are caused by the same disease process and are distinguished by the timing of the onset of symptoms."

What I'm having difficulty understanding is whether Dad has Dementia with Lewy bodies or Parkinson's Dementia, especially as the Neurologist said that he's Parkinsonian.

His hallucinations started before his cognitive decline I would say, but his mobility problems and tremors probably started afterwards. I suppose it's a bit late in the day to be querying this, but I'm only now starting to take stock of all the paperwork we had referring to his medical history and putting it in order.

Dad's memory is really good when he's talking about the past. He remembers names, addresses, events and places he's been. He's talking about things that he's never mentioned before. His short term memory isn't terrible either, but he does confuse days and has recently started to need more help with taking his medication at the right time. However, he can visualise in his head where roads are in our town and direct you to them and also tell you where certain places are in the UK. His language is good although he does sometimes slur his speech and his voice can be quite weak.

His mobility is pretty bad, but he can still moved around - it's his mobility that has deteriorated more than his memory these last few years. His shaking has got worse.

The confusion for me arises because of the use of the word 'Parkinsonian.' Does anyone on this forum have any insight into this or should I just go back to the original Consultants who diagnosed in 2020?
Hi @Candice Marie my husband has Parkinsons and Parkinsons dementia so I will try and unravel some of the terms for you. Parkisonism is a blanket term to cover all the types of Parkinsons and its effect. Lewy body dementia is diagnosed by usually an MRI it shows clear plaques in the brain.
Parkinsons dementia is a bit more woolly and is usually diagnosed by symptons. Hallucinations are one of the most notable symptons.
Parkinsons disease itself should be diagnosed by a DAT scan which is a specialised scan.
It is normal for people with Parkinsons to see a neurologist yearly so might be worth following it up.
I am assuming he is having no medication. Maintaining mobility is essential for Parkinsons of whatever variety so try and get a physio referral for him.
I'll stop there because I don't want to overwhelm you but usually there are local Parkinsons groups with exercise groups available. There will be seated groups but people with any type of Parkinsons need to exercise and its quite specialised type.
 

Candice Marie

New member
Feb 1, 2024
6
0
Thank you to everyone that replied and for the signposting to further information. I don't know whether it does matter which label I put on it, apart from whether that makes a difference to the medication he should be on. I do tend to look into things quite closely though and I normally want to know the details - unfortunately I just can't get my head around the differences.

He's currently on Donepezil. I've arranged physio for him as I know how important it is for him to keep moving. There is a Parkinson's Centre about 18 miles from where we are and I will try and get my dad to agree to going there, but sometimes that's easier said than done!

Thank you all again.
 

Rayreadynow

Registered User
Dec 31, 2023
280
0
My PWD was seen by a Consultant Psychiatrist a couple of times for very short periods but how would I get a Consultant Neurologist to do an assessment?
 

nitram

Registered User
Apr 6, 2011
30,220
0
Bury
My PWD was seen by a Consultant Psychiatrist a couple of times for very short periods but how would I get a Consultant Neurologist to do an assessment?
In my wife's case the psychiatrist involved the neurologist specifically about proposed use of Quetiapine, result was not to prescribe, Memantine and Epilim were used.
Final diagnosis by psychiatrist was 'Lewy Body variant of Alzheimer's disease'.
 

Banjomansmate

Registered User
Jan 13, 2019
5,438
0
Dorset
The Banjoman was diagnosed with Lewy Body Dementia/Disease and put on Rivastigmine patches as he couldn’t be guaranteed to take tablets. Later, when he was in hospital they were told not to give him other medications because it was LBD. I imagine that would be the same whether it was LBD or Parkinson’s.
His memory for old events was pretty good which led to his brother in France believing he was much better than he was, until it was pointed out that he only talked about the past when they spoke on the phone. Once he was asked about what he had been doing recently he hurriedly finished the phone calls with an excuse, we assume because he couldn’t remember!
One time after he was in residential care and couldn’t tell you what day it was, let alone the month or year, I played one of his CDs and he suddenly said “That was recorded in 1926“. When I checked on the CD information card he was right!
 

maisiecat

Registered User
Oct 12, 2023
321
0
My PWD was seen by a Consultant Psychiatrist a couple of times for very short periods but how would I get a Consultant Neurologist to do an assessment?
It would be usual for the Psychiatrist to refer to a Neurologist if he suspected any type of Parkinsons but Lewy body can be seen without Parkinsons. If you think your PWD has Parkinsons types symptons are present ie tremors, slowness, poor mobility etc as it is very important for People with Parkinsons to exercise doing very particular type of exercises.
 

Candice Marie

New member
Feb 1, 2024
6
0
Thank you all for your replies and my apologies for not replying before now. Events have overtaken my husband and I a bit recently and we've been caught up on sorting stuff for my father-in-law. Banjomansmate, the memory of bygone events/dates seemingly crystal clear and more recent stuff (including what day it is) being hazy does sound exactly like my dad.

It's so good of you all to reply and give such helpful information. Thank you.
 

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