Should we tell her she has dementia

Should I tell a person living with dementia that they have dementia? The answer is…it depends on three things, which I’m going to break down for you right now.

One, what is the reason for which you’d like to tell this person that they have dementia? This is really kind of the key piece here. We never want to tell somebody living with dementia that they have dementia…so we can prove to them why we’re doing a thing.

An example would be, “Mom, you have dementia. I have to transition you to this care community setting.” Probably not the best idea… A good example of why you might want to tell someone that they have dementia, is that maybe they’re asking about it. They’re saying to you, God, I just feel like something’s wrong with me these days. I, I don’t know. Like, I don’t know what it is. That could be an opportunity to talk with them about the diagnosis, but we never want to throw it at somebody as a reason for why a thing is happening. Keep in mind that even if you convince somebody living with dementia, that they have dementia, they might not remember. And at some point in their disease, they’re not going to at all. And no matter how many times you keep telling them, it’s going to be upsetting for everybody involved and it’s just not going to do any good.

So the second thing here is it depends on the stage that they’re in. I became very interested, particularly in this piece of it. When I started working with people with mild cognitive impairment previously in my career, I’d only worked with people with moderate to moderately advanced stages of dementia because I worked as a dementia care director and everybody had moderately advanced dementia, pretty much. So, I never talked about dementia with people who had dementia until I worked with people with MCI or early stages of dementia. Suddenly, they’re coming in and saying, “Hey, I got a diagnosis of Alzheimer’s disease. Or my doctor says I have Louis body dementia.” And I’m like, whoa. At first it actually kind of alarmed me. I was like, oh my God, am I allowed to say this around them? Am I allowed to say the D word around people who have the D word? And eventually, I got a lot more comfortable with it, obviously, but that was a great experience for me because I just never talked about dementia with people who had dementia.

Here’s the third thing. Who are you to them? Are you someone who’s had a relationship with this person your whole life, where you shared this information with them? Are you somebody who wouldn’t share this information, for example, like, are you a cousin from out of town who’s shown up for a week and wants to announce to your uncle that he has dementia? Not cool. Not your place here. Right? Chances are, if you are that person, you’re not watching this video, let’s be honest. Or someone just sent you this video. So, who are you to this person?

These are all things to consider. You know, if someone’s in an earlier stage of dementia and they want to talk about the diagnosis and you want to share it with them, I think that’s probably okay. As long as you’re doing it for a reason that isn’t to throw it in their face because we never want to make that the reason. It’s not about us. It’s about that person.

So think about the reason, the stage, and who that person is to you before deciding if you’re going to tell them. And if you do tell them, which is fine, don’t keep bringing it back up, you know, in a month or a couple of months, or even a year.

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