Dealing with Dementia Myths


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I’m going to address two of the myths that I hear frequently about dementia. The first one is this.

“He still knows who he is, so he doesn’t have dementia.”

I’m not totally sure where that one came from, but I hear it frequently enough that I figured we should talk about it. People living with dementia pretty much always know who they are. I’ve never – in my entire time of working in dementia care communities or working with home care companies or just knowing people living with dementia, working directly with them, working with tons of caregivers all over the place – heard of anybody living with dementia, not knowing who they were throughout their entire disease process. People know their names. I mean, your name is really one of the first things you learn when you are very small, right? That’s something that people call you and you respond to it.

It is deeply, deeply stored in your long-term memory, and really everywhere, to the point where if someone in a restaurant, has the same name as you, and they’re talking about like, if I hear someone say Rachael, I’m like, right. It’s just normal. It’s a habit. I respond to it. I’m like, “are they talking about me? No. Okay.” So that’s a myth and we never want to rely on something like that to diagnose or not diagnose dementia.

The second one is very related to this, which is, you know, he, she, whoever still knows who I am, therefore they don’t have dementia. I hear that one a lot, too. And it’s the same kind of saying most people living with dementia go through their entire disease process, being able to place everyone on their timeline.

And if you’re wondering what I mean by timeline, there is a lot more about this on my YouTube channel, what I call Timeline Confusion™. And of course, in my blog and on my podcast, in short, timeline confusion is a term I defined, which means a person living with dementia may have trouble placing a loved one on a linear timeline. You may have seen this. If a person has trouble recognizing you and think that you should be much younger than you actually are. This is what happens sometimes is that a person living with dementia will have trouble placing a person on their timeline. And then that is the issue. It’s not that they don’t know them. It’s not that they don’t love them. Even all that said, most people living with dementia will be able to place their loved ones on their timeline for the vast majority of the disease.

And using this as a marker to say like, oh, well, they don’t have dementia because they know who I am. Well in a very early stage of dementia, that is not, the timeline is not even going to be a problem. So we definitely don’t want to rely on that one caveat to the first thing that I was talking about. You know, he still knows who he is. You know, if a person is looking in a mirror and they don’t recognize themselves, this one would be super late in the disease process. And you would definitely know they had dementia by then, but then two, that again would be a timeline confusion. They’re not sure why they look so old. They still know who they are, but looking in a mirror, they’re like, who’s this old guy that can’t be me. Right. So that’s what all that’s about.

But we never want to use myths like these, or like one definition to define what dementia is or be like, oh, this person has it. Or doesn’t have it because of this one thing. You know, sometimes I see being passed around on LinkedIn and Facebook, this picture of like, it’s like a jumbled picture of a face, but there’s a lot of stuff going on in the photo or the image. And it says, if you can find the elephant, you don’t have dementia. That is absolutely ludicrous. I have no idea where that came from. That is nonsense. Don’t believe that or use one marker as a boom, they have dementia because of this one thing, or they don’t have it because of this one thing – we need more information.

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of three published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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