Mar 19, 2012

What Type of Dementia?

There is only one way to get rid of the stigma attached to the word Alzheimer's and that is to put it under an all inclusive umbrella term...

By Bob DeMarco
Alzheimer's Reading Room

If you want to know the truth I am getting sick of the word Alzheimer's. I don't like it.

What Type of Dementia?

I don't like the connotative meaning. I don't like the stigma attached with Alzheimer's. I can't even pronounce Alzheimer's correctly.

Let me tell you, based on the searches that come to this website, most people can't spell it correctly either. Why is it even called Alzheimer's?

.Do you know what they call it in Europe? Dementia.

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Many people are afraid to say the word Alzheimer's. So instead they say, dementia.

Lets face it. Lets be honest with each other, dementia is a kinder, gentler word.

Did you ever wonder why Alzheimer's has a stigma attached to it? Simple.

For 30 years the deepest pocket has been trying to convince anyone that will listen that no one survives Alzheimer's. Imagine if someone spent hundreds of millions of dollars reminding us over and over that no one survives life. My guess is that many of us would conclude there is no reason to live. Remember, the medium is the message, not the other way around.

So, I think we should change the name to dementia.

Think of it this way. Let's say I tell you I went to Ben and Jerry's today. Would you ask me if I had pizza? Probably not.

You might ask me, what flavor of ice cream did you have? I might answer, vanilla. Or, chocolate. Or, some really wild and crazy flavor of ice cream.

So imagine a world where I said, my mother has dementia. And then you asked me, what type? I would answer, probable Alzheimer's. Some of our good friends might answer, Lewy Body. Or, Frontotemporal. Etc.

I bet our buddies with the other dementias would like this idea. At least they would feel like they are being included in. Instead of being included out.

In the last several months I have been asked repeatedly to join groups or talk on panels where they want to discuss the stigma attached to Alzheimer's and what we can do about it. In fact, I have talked incessantly about this topic this year with people who asked.

I have now made my decision.

There is only one way to get rid of the stigma attached to the word Alzheimer's and that is to put it under an all inclusive umbrella term,


I know people will say that is never going to happen. Really? In the last 40 years hundreds of countries have changed their name.

Dementia is an all inclusive term. I like it and it is already used all over the world.

Once we get the word straight we can then move on to a discussion of the deeply forgetful and what we need to do.

Still don't agree.

Let me ask you this, how much has been accomplished in the last 40 years by creating a word that carries with it a negative connotation and stigma?

Do you really believe we are going to get action from politicians when they don't even know what the word Alzheimer's means?

So there you go. You have my solution to the stigma attached to Alzheimer's. Let's call a spade a spade and start talking about the different types of dementia.

Who knows.

Maybe we change the word and the world stops treating Alzheimer's patients and Alzheimer's caregivers like we have leprosy.

I know it won't be easy.

Of course, there is the other alternative. Keep discussing how we change the stigma attached to Alzheimer's. Got a couple of hundred million bucks to reeducate the populace?

You now know my opinion.

You are reading original content from the Alzheimer's Reading Room.