My apologies I've been so long in posting. Life gets in the way of my fun! :)
Even after 20+ years, trying to navigate this disease is still a challenge, but we continue to learn every day. Although Jamey is only 64, he's in the final stages of PD. He is now showing significant signs of dementia. However, if he has to have dementia, Parkinson's dementia is the one to have. PD Dementia is different from other dementias like Alzheimer's, or Lewy Body.
Parkinson's Disease Dementia (PDD) is difficult to define, and like the disease, it can be extreme one day and almost undetectable the next. "The changes can be so drastic that sometimes we hear that others are concerned whether the individual is "faking" their symptoms because they can seem so much better in between these episodes." (The Parkinson's Path: Fuhgeddaboudit - Parkinson's Disease Dementia, Winter 2023, www.panctoday.org).
Jamey exhibits confusion and inability when trying to do simple tasks he's done for ages. But other days, there seems to be nothing wrong. It's difficult for a caregiver to recognize when he is going to be "on" or "off". When this first started, I dared not leave him by himself for fear of him doing something unfixable. (Months ago, he opened a lot of subscriptions that began taking money out of our account automatically. It took me several months to clean up all the accounts and put in pin codes and blocks; actually, I'm still working on it). At that point both of us felt like prisoners. I didn't go out, even to my exercise class, for fear something would happen, But, since then, I've learned how to spot the signs that he's going to have a dementia day. He begins the day in lethargy; watches a lot of TV, sits around, even takes a nap or two. When I see this, I know he is going to be "off". These are the days I won't leave him alone. These are the days he will be confused and at times, not even know how to work the remote control on the TV. Even a simple bowel movement can be an issue, a surprise clean-up problem.
Here is an excerpt from the paper I quoted above. It was written by his doctor, and I found it very helpful. I hope you do as well. Mind you, it hasn't quelled my inquiries of "Really?! You can't do that? You did it just fine yesterday!"
"So just what is Parkinson's Disease Dementia? I have heard that it is related to Lewy Body Dementia. Is this correct?
The answer can be a bit confusing. In fact, you may still find that some clinicians use the terms LBD, PDD, and DLB interchangeably. However, the correct terms are:
Lew Body Dementia (LBD) is an umbrella term that refers to two types of dementias that start with different symptoms but are very similar:
--Parkinson's Disease Dementia (PDD) starts with motor symptoms and dementia develops later. Most individuals with PD have cognitive impairment by 15 years of disease duration, either mild cognitive impairment (MCI -36%) or PDD (48%).
--Dementia with Lewy Bodies (DLB) starts with cognitive symptoms, Parkinsonian symptoms develop on an average 2 years after onset of dementia, are often milder and respond less well to medications. Note: Robin Williams had Lewy Body Dementia. His wife is still a strong advocate for LBD awareness.
The typical cognitive pattern of PDD is problems with attention, executive functions and visuospatial ability. These are the main issues early on; more significant memory impairment occurs later. There are also two distinct cognitive features commonly seen in PDD but not in AD (Alzheimer's Disease).
1. Cognitive Fluctuations: Often described as having good and bad days cognitively. Person may appear confused, staring off into space and be difficult to get their attention. These are profound changes in attention and alertness that can last hours and then resolve on their own. Fluctuations in cognition are common in PDD, but not in AD.
2. Visuospatial Dysfunction: not a problem with the eyes, but rather the visual part of the brain that makes sense of the information collected by the eyes. May have seen an eye doctor and been told that the eyes are working well but still having problems with reading, judging distances and reaching for objects (might drop things often).
3. Although not 'cognitive' symptoms per se, recurrent visual hallucinations and a history of REM sleep disorder are also much more common in PDD compared to AD.
Medications should be reviewed to identify those that could worsen symptoms or are best avoided in older adults with dementia.
This article goes on to give other ideas on coping with PDD. Worth reading if you suspect your loved-one has PDD, LBD, or AD.
