Hi jtcaggie,
Here’s my question for your doctors: what type of dementia is it? Alzheimer’s disease is just one type of dementia, but it gets confusing. You’ll often hear doctors and other people say things like, “dementia and Alzheimer’s,” but this is kind of a misnomer. Alz is the most common form of dementia, but there are over 70 different potential causes of reversible and irreversible dementia. I describe dementia like this: it is an umbrella term—a lot like saying someone has cancer. Your first question would be, “Well, what type of cancer?” Dementia is a lot like this phrase. I hate that doctors gave you all an “Early Onset Dementia” diagnosis. To me, that indicates that they aren’t sure what type of dementia it is yet. For me to answer this, I need to know what the “dementia” is, but it seems like her doctors don’t even know. Keep me posted. I would love to help, and I hope you find out more information soon.
Sorry, I should have stated that I understand the difference between Dementia (list of symptoms) and ALZ (one of the actual diseases).
Let me give you more info that will help. My wife went in for testing last November (6 hour testing session). She was unable to finish any of the tests and the outcome was a diagnosis of EO-ALZ. She was devastated. Her urologist was not a specialist in Dementia, so he sent us to a specialist at UT Southwestern. The specialist did not agree with the diagnosis because my wife was taking a medication for migraines that was a cognitive inhibitor. We got her medication changed and in April, she was retested. We were hoping the test would show her issues were around the medication. She did not do well on the test. The Specialist told us she could not definitively say she has ALZ. When I asked if we could get the ALZ label removed from her medical record, she said that the test did show she has cognitive issues and that she does have Dementia, so no, we could not get the label removed, because we cannot prove she does not have it. The only way she could be sure was more tests, of which only one is covered by insurance and it is a spinal tap, which my wife had done as a teenager and is not looking forward to having it done anytime soon.
I am just trying to plan ahead. With EO-ALZ, I kinda knew what to expect, but with EO-Dem (wide open), I do not. I did talk to someone today who stated that it really does not matter which dementia based disease my wife has, that because she was diagnosed at such an early age and the fact that any of the dementia based diseases progress faster the younger the patient is, then I should plan the same as if she was diagnosed with EO-ALZ. She said within the industry they see a life expectancy of anywhere between 8 and 20 years depending on how the patient’s body reacts to the disease in addition to any other medical issues the patient has.
If you can provide any insight, it would be appreciated. It is hard to find good information on EO-ALZ let alone EO-Dementia of any kind.
Hi again,
Okay, good information to know. It probably is too early to know, but with that wide open diagnosis…I would proceed as if it were Alzheimer’s. It’s true: usually early onset AD moves quicker than if it were diagnosed later in life, but the disease is SO varied from person to person. And you’re right, the lifespan of a person with AD can be anywhere from a few years to twenty years. I am sorry I can’t be of more assistance. My best advice is to treat it like it is AD until we know more. Any questions, feel free to contact me again.
