Why do we call it Alzheimer’s Disease and not Alzheimer’s Dementia? From what I see and read and have researched, Alzheimer’s is the only form of dementia that is called a disease other than Parkinson’s. Does calling it a disease make it stand out from other forms of dementia? I think it does. When someone hears you have Alzheimer’s disease or Parkinson’s Disease you are automatically associated as having a terminal illness. But tell someone you have Lewy Body Dementia or Frontal Temporal Dementia or Vascular Dementia any other form of dementia they look at you and say what the hell is that.
Alzheimer’s and Parkinson’s stand alone when it comes to fund raising activities, recognition and sympathy. I understand that Alzheimer’s has the largest population of people with that form of dementia. Yet nearly, all forms of dementia are incurable and cannot be slowed down. All forms of dementia are insidious in what they do to a person and their families. But why does it seem like we are popularizing one more than the others.
I have to admit that it is hard to watch as the majority of funding going into research is for Alzheimer’s and very little is going into research for other forms of dementia. I have heard and respect that researchers are “hoping” that if and when they find something that will help Alzheimer’s it “may” also help other forms of dementia as well or that something will follow afterwards. That in of itself makes those of us that do not have Alzheimer’s feel like a lesser person. People with Alzheimer’s and their families are continually told to hold out hope for a cure, yet I never hear that about other forms of dementia. I do not know why one is called a disease and the others are not or if that is why one has everyone’s attention and the others do not. I’ve looked on the internet but was not able to find an answer.
So why this rant and what do I think needs to be changed.
Well I’m tired of getting the “deer in the headlights look” every time I tell someone I have Lewy Body Dementia. I think that all forms of dementia need to be talked about more and brought into the mainstream of conversation. We need more education about all forms of dementia and we need stop highlighting one form of dementia more than the others. Case in point, NAPA or the National Alzheimer’s Project Act was created in 2012. Now if you look at the website https://aspe.hhs.gov/national-alzheimers-project-actit says the following “The National Alzheimer’s Project Act (NAPA) creates an important opportunity to build upon and leverage HHS programs and other federal efforts to help change the trajectory of Alzheimer’s disease and related dementias (AD/ADRD).”
But why not just call it the National Dementia Projects Act? States are following suit with their own plans and from what I’ve found they are called the “fill in the blank” State Alzheimer’s Plan. Here is another point from a good friend of mine Dr. Al Power of Rochester, NY: “the term Alzheimer’s Disease and Related Dementias puts everything together as if it’s a subset of Alzheimer’s Disease, and they aren’t really related, other than causing cognitive changes.”
As long as we continue to separate Alzheimer’s from other forms of dementia, people who are not educated enough about dementia will continue to give those of us who do not have Alzheimer’s the “deer in the headlights” look. But more importantly research will continue to be a major challenge for any of the other forms of dementia.
It is important to note that when I was first diagnosed I was told I had Early Onset Alzheimer’s Disease. It wasn’t until two years later that my diagnosis was changed to Lewy Body Dementia. That’s when I began to notice the different reactions from people when I told them I have Lewy Body dementia from when I told them previously that I had younger onset Alzheimer’s. That’s also when I started to see the difference in research funding, so shame on me for not knowing the difference back then as well.
I am not the first to broach this subject and I thank those that have gone before me, like my dear friend Robert Bowles of Georgia. I guess I just needed to get this off my chest before we begin a New Year and I wouldn’t be writing about it if it didn’t bother me. Please know that I am not trying to speak for everyone else who may have a form of dementia other than Alzheimer’s. I also want to make a point that I do not think that anyone is purposefully trying to separate one from the other; I just don’t think that enough thought or input has gone into it and the end result is what I and others are having to deal with. This is also not meant to disparage anyone who has Alzheimer’s or their families. I have lost some very dear friends on this journey to Alzheimer’s and I continue to fund raise for it. So, am I way off base here? Do others feel the same way? I am always open to other points of view and would welcome any constructive feedback. End of rant and Happy New Year 2019.
Michael R Belleville
“Get busy living or get busy dying”