I am going to write about diagnosis today for those that don't know a lot about dementia. Those of you that do there isn't going to be anything new here for you. I have so many things in my head but I have trouble focusing on what I want to do so I don't write on a regular basis and there are many things that could be useful to blog about about. I am going to make more of an effort to get in a habit of doing this regularly. Always easier said than done with this disease.
I have a diagnosis of atypical Alzheimer's Disease. How this came about after a number of years with another dementia diagnosis to start with is described in my story so I won't waste time repeating that here. What I will talk about is that I really do hate the word "dementia" and many diagnosed people do as well because of all the baggage and negative connotations to the word. It is a scary word. You are demented? How scary. See what I mean? Anyway, dementia is the all encompassing word used to describe a very large number of diseases under the umbrella of dementia with Alzheimer's Disease, Lewy Body, Vascular Dementia, FTD and many, many more. While I was told by one of the world's authorities in these diseases that it was medically undeniable that I have dementia it is only thought that I have atypical Alzheimer's, in this case for very good reasons but still it is not 100% sure that I do have that variation. No one diagnosed with any type of dementia is a 100% in their diagnosis of the subtype until autopsy or a biopsy. Now a biopsy can be done but why? There are obviously major risks to making a hole in your skull, removing some brain tissue for biopsy. If there was something of great importance for treatment to be learned then it might be worth the risk as it is with things like brain tumors but currently there are no treatments of any of the dementias that slow or stop progression. There are only treatments that can help with symptoms. And there are drugs approved to treat the symptoms of Alzheimer's Disease that are commonly used for other types of dementia off label, which means they aren't really proven to make a difference with those types of dementia but they don't have anything else to give you, so they give you those drugs believing that it does help some people. It is all with best intentions by doctors, don't get me wrong, I am not saying this is a bad practice as some of the drugs do make a difference for some of the patients.
I do know some patients with diagnosis such as FTD that have decided not to take any of these drugs after having tried them, not being able to tell any difference and deciding that the cost of the drug was too much for their limited budget given they didn't feel like it made a difference. Others choose supplements and the "best practices" which can be found at the Alzheimer's Association web site through the links page of this site. Best practices does have scientific evidence to show it is the best possible thing we have right now to possibly make a difference in the rate of progression with these diseases. I believe it is true yet it isn't always easy with this disease to follow the guidelines. Apathy is a daily battle for which I only win sometimes.
So hopefully now you know, if you didn't already, that any diagnosis of a specific type of dementia is not 100% certain. They can be 100% certain you have dementia but not 100% certain of which type without an autopsy, which of course you have to have died first, or a biopsy which while you could find someone willing to do that most ethical physicians would refuse because the risks far outweigh anything that would be learned from this procedure. Certain diagnosis like Alzheimer's have a much higher rate of accuracy than say a diagnosis of FTD. A diagnosis of Lewy Body is generally pretty accurate I believe because there is a known bio marker for that disease but from what I have learned none of them are 100%. While the diagnosis process is evolving and I am sure improving the last I knew subtypes like FTD were only sixty some percent accurate upon autopsy so there is much room for improvement.
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