Alzheimer's Death Or Was it Really?

What did Grandma die of when she had Alzheimer's? Family caregivers want to know. Did she die of Alzheimer's, like her death certificate says? Or what?

In my 20 years as an Alzheimer's caregiver, I've seen a number of elders die. Of course. You'd expect that. Old frail ill people die. But very seldom did it seem that they died of anything you'd identify as the Alzheimer's they were diagnosed as having.

No, most people died of the usual suspects in the world of elders. They had fragile hearts which finally stopped beating -- heart failure. Congestive heart failure. Rarely, an actual heart attack. They had pneumonia. Lung disease of various kinds. Cancers. Those kinds of causes.

I began reading more about what people with Alzheimer's die of. What I gradually realized was that, once you had been diagnosed with Alzheimer's dementia, then it was almost sure to be listed as the cause of death. Even if it really might not have been.

Does it matter? Well, since Alzheimer's surrounded by myths, legends and downright lies, I think it does matter. Shouldn't it matter if we are falsely attributing death to a disease which actually may not kill most people who have it?

I can imagine families saying, "What does it matter to us -- we've still lost our Mom?"

And they're right. But in medicine, shouldn't it matter that we really know what killed people -- and what didn't?

When does Alzheimer's kill people? Well, probably like you, I've read that the commonest cause of death in elders with dementia is choking. I never met, saw or heard of one elder who died of choking, though I'm sure it happens.

Another thing I read is that people with Alzheimer's become so overcome by the their disease that they actually forget to breathe. The autonomous nervous system controlling breathing can't do its job.

Is this is really due to Alzheimer's or some other brain affecting disease? Again, does it matter? Well, when we rely upon knowing which disease brings about what death, surely it matters.

I'm not pretending here that I'm a medical expert or doctor. But I do like clarity in my facts. I don't hear that for Alzheimer's. Supposing much of what we see may not even be Alzheimer's?

Our modern version of Alzheimer's disease is certainly not what Doctor Alzheimer spent his l career studying. He made his life work the study of what was then called pre-senile dementia. He didn't study old people's brains, but the brains of people under 60. What we now call early-onset Alzheimer's.

So, if our Alzheimer's is not really Doctor Alzheimer's Alzheimer's disease -- isn't that weird?

Throw in a few other items I've gathered in my reading about Alzheimer's. That a number of people exhibit what is diagnosed as Alzheimer's disease even though it is linked with specific genetic chromosome damage. Chromosomes 13 and 14, 19 and 21, among them, and you can count on it that many more chromosome issues are out there to be discovered.

Now why would we not be calling these Chromosome 13 Dementia, Chromosome 14 Dementia and so on? We do that with other dementias -- Korsakoff's Syndrome, Pick's Disease, vascular dementia, multi-infarct dementia. These each have their own name, even if the outward manifestations of these dementias may share many similarities.

I just think that, given that Alzheimer's is the single disease most dreaded by elders, we need a bit more accuracy about the name and the terms we use.

Isn't that important? Very important?