In “Mom Update: February 2013” I wrote about how quickly mom’s disease is progressing and how it might be something in addition to or instead of Alzheimer’s disease.
Oh we’ve been calling it Alzheimer’s disease, but the truth is — we don’t know what mom has. Mom had an MRI in 2006 that ruled out other brain problems like a stroke or a tumor, but we never received a definitive diagnosis — just “probable Alzheimer’s.”
With Alzheimer’s making up the majority of all dementia cases, it’s an easy diagnosis to go along with. Add that my grandmother and great-grandmother “had Alzheimer’s,” and you can see how believing the diagnosis was even easier.
But we didn’t really know what my grandmother and great-grandmother had. And we don’t really know what mom has.
The doctor jumped to a conclusion and so did we.
There is plenty written about the misdiagnosis of Alzheimer’s disease including a 2011 study that found half of Alzheimer’s cases are misdiagnosed. With Alzheimer’s making up most of all dementia cases, and given that it can’t accurately be diagnosed until after death, probable Alzheimer’s is an all too common diagnosis doctors make.
Another article titled “What Type of Dementia Is It?” outlines the importance of getting an accurate diagnosis in an effort to provide the best care. There are over twenty different types of dementia including rare forms — one of which my mother might have.
I feel a little foolish and naive about not questioning mom’s diagnosis.
It’s too late for diagnostic testing on my mom. She would need to be sedated to get an accurate brain scan — and sedation and dementia don’t mix well, quite often causing further decline.
If we want to know what mom has, at this point, there is only one way to find out — an autopsy.
Autopsy is a scary word, and scary to think about. But I’ll be thinking about it.
How important is it to know what mom has? How will we benefit from knowing? What’s the downside of not knowing?
Have you had to make this type of decision before?