On many levels, people are ignorant. I’m ignorant about so many things, yet I have confidence that I know what I know - or at least what I believe I know. I know there are 24 hours in a day (and yet, Time is a man-made concept, so this could change at some point), I know I live in a house with 2 dogs in a suburb, and the list continues. Many times what I am forced to confront frightens me based on what I already know through experience, but I carry on and realize it really wasn’t all that awful - my own fearful creations were of my own design. But what I’m discovering, lately, is that most people believe that Dementia is just a synonym for Alzheimer’s. It doesn’t seem to matter how often you explain it to them, but they still cling to that belief.
Alzheimer’s IS Dementia - but a form of it. Dementia is an umbrella rather like Cancer. Should someone tell you they have cancer you don’t automatically assume they have Leukemia, do you? You ask, “What type do you have?” So it should be with Dementia.
We have been deluged with information about Alzheimer’s in the past 20 years. Honestly, we are led to believe that this must be the only form of the disease. I, myself, didn’t realize there was any other manifestation; rather I assumed that anyone who was of a certain age and demonstrated signs of mental degeneration was succumbing to Alzheimer’s or senility. That isn’t the case, though.
To state that there is a rabid ignorance of dementia, even in the medical community, is a truth, sadly. When working with my mother’s primary physician after having to place her in a memory-care facility, I realized that we were working with someone who hadn’t a clue. When I explained Mother was suffering from Lewy Body Dementia, she exclaimed, “Well, that’s just another way of saying ‘Alzheimer’s’.” In retrospect, I believe my “teaching moment” couldn’t have been more forthright. I blasted the woman and explained the differences from what I, then, knew. I explained that treating her for Alzheimer’s could lead to unnecessary medical complications, or death, and could also put her in line for a lawsuit. This shook her up. We fired her on the spot, and found another who understood the disease and continues to research.
This was not an anomaly. I continue to find medical personnel who define all dementias as Alzheimer’s. They are shocked when I explain that Lewy Body Dementia is a “Spectrum Disease” and is closely associated with Parkinson’s, as they have the same causes, unlike Alzheimer’s.
You see, Lewy Body and Alzheimer’s both suffer from the misfolding of brain proteins. But the causes differ. With Alzheimer’s, you have tau proteins and Beta-amyloid plaques. With Lewy Body Dementia, you have alpha-synuclein acids. With LBD (Lewy Body Dementia, also known as DLB - Dementia with Lewy Bodies) the Lewy bodies cover the cerebral cortex and begin to eat away at the receptors. These are also found in other regions of the brain and begin to wreak havoc in their wake. As with Parkinson’s, they can cause tremors and movement problems, leading to speech impairments, hallucinations, delusional behaviors, apathy, and a sleepiness that is contra-intuitive to our (meaning the general public) routine; they tend to sleep about the same number of hours that we are wakeful, and are awake roughly about the same number of hours we are asleep. They also suffer from sleep disorders in which they may be acting out in their sleep, which can also cause them to need more rest than do others.
With Alzheimer’s (AD - Alzheimer's Dementia), you find patients who wander, who have a terrible time sleeping and staying asleep. There are also differing regions of the brain which are affected. AD can last several years. LBD tends to last 4-7 years from diagnosis, until death.
While AD may be the most diagnosed form of dementia, LBD tends to be the 2nd most prevalent form, and the most mis-diagnosed form of dementia, today. Why? Because of ignorance and lack of education on Dementia and its manifestations.
Dementia includes: Alzheimer’s, Lewy Body Dementia, Vascular Dementia, Sundown Dementia, Parkinson’s Dementia, Frontotemporal Dementia, Creutzfeldt-Jacob Disease, Normal Pressure Hydrocephalus, Huntington’s Disease, Wernicke-Korsakoff Syndrome, and Mild Cognitive Impairment. There is also one other - Mixed Dementia; this is a form of dementia in which the patient exhibits signs and symptoms of more than one of the dementias. With LBD and AD, as well as with PD, you find that these three are Spectrum Dementias - meaning they fall within the realm of inter-relating with each other and this can also cause great confusion.
The Spectrum Dementias, as I stated above, are AD, LBD, and Parkinson’s Disease Dementia (PDD). Let’s look at this as though we have a line. At one end you’ll find AD and the opposite end is PDD. LBD will fall somewhere in the middle between the two, depending on the patient. It is possible for the LBD patient to have some plaques and tangles from AD, and still have the tremors and symptoms from Parkinson’s. However, you cannot treat them the same.
Medications for these diseases need to be closely monitored as the two dementias, LBD and AD, have differing causes. Therefore, if you give the LBD patient the same medications as you would for AD you could cause mortal complications. The causes and symptoms are different - so you wouldn’t treat one disease for another. A good physician and a neurologist, working in tandem, will be able to maneuver through the medications and find the appropriate combinations for the patient.
While research continues, and the medical community becomes aware, there are still many who question or refuse to acknowledge the differences. This is not only sad, but careless. It is awful that I know more about the disease than many of those in the medical community of which I am not a part. I hope only that this reaches some and begins a process that will help many in the near future.
And, for those of you who are reading this and realizing a broader sense of the disease, please be intent with your use.
Thank you.
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