Your loved one keeps asking for someone who has already passed away. Every time you remind them, they grieve all over again, as if it’s the first time they’ve heard it.
Is that the loving and kind thing to do?
Lying to someone with dementia is one of the most controversial topics in dementia caregiving. Some people believe it’s okay. Some people believe it is not. And many of the people who don’t were taught growing up, from a religious background or just from being a good, kind human being, that you should not lie.
Wherever your mind is already going, I want you to hear out this thought process. Because I don’t even call it lying anymore. I call it choosing kindness over truth.
Is Lying to Someone With Dementia the Same as Lying?
When we think about lying in the traditional sense, we think about deceiving somebody so that we get something in our interest, at the detriment of the other person. We’re only concerned about ourselves, regardless of what it does to them.
That is different from what happens in dementia.
When we do what most people consider to be lying to someone with dementia, we’re not trying to deceive them. We’re trying to relieve some sort of distress or anxiety for them. So rather than deceiving a person for our own gain, we’re trying to relieve the person with dementia of their distress, for their own good.
Why Someone With Dementia Lives in a Different Reality
Stick with me here, before you think, “Is this still lying?”
Many times, people with dementia are living in their own reality. Let’s say your loved one is having visual hallucinations, and they see somebody standing in their home who is not there.
You tell them, “Nobody is there.” But in their brain, they literally do see the person. Their brain is producing that image. They’re going to think you’re lying. Or are they lying, because you don’t see the person?
So who’s lying?
It gets really complicated when you think about it like this. Before we get wrapped up in “you can’t lie,” we have to first understand the brain of somebody with dementia. Many times it’s living in a different reality. They’re not living in our reality. What’s true for them is not the same truth for you.
So when you say nobody is there, and you dismiss their concern when their brain shows them somebody is there, you’ve just made caregiving more difficult for yourself. You’ve put more strain and tension on your relationship. And your loved one could quite possibly start to be concerned about you, or mistrustful of you, because you don’t see the person who is very clearly standing there.
If your loved one is seeing people who aren’t there, I go further into dementia hallucinations and how to handle them.
Joining Their World Instead of Correcting It
So we have to start figuring out how to join the person with dementia’s world.
Sometimes that’s going to look like lying to the majority of people who don’t understand dementia. In reality, it’s joining their world and understanding the world as they see it.
Here’s what that looks like. If they see somebody standing there and they’re thinking, “What’s a stranger doing in my house?” you can say:
“Oh my gosh, you know what? Let me take care of it. Let me get this person out of the house. Come over here, sit over here. Let me get you a glass of water. I’m going to take care of everything. You have nothing to worry about. This was just somebody who stopped by for a visit.”
Then you settle them in another room, take care of the issue, and come back. That could take care of the whole thing.
A layperson might think you’re lying, because nobody is there. But they weren’t seeing it through the lens of dementia.
When Your Loved One Keeps Asking for Someone Who Has Died
Many times, the actual truth is the most cruel thing we can do. Hear me out with another example.
Your loved one doesn’t remember that somebody in their life has passed away. Their memory is so poor that they keep asking for this person. And every single time you remind them that the person has died, they grieve all over again, as if it’s the first time they’ve heard it.
Do you think that is a loving and kind approach for somebody with dementia? Or could you choose a kindness approach?
A kindness approach sounds like: “Oh, you know what? I’m not sure where they’re at. I think we have a photo of them over here in the photo album.”
You look through it together. And as you’re looking through the photo album, you start a conversation. You spark another memory. You ask about something in a picture.
You don’t have to tell them the full truth that the person is dead, unless you want to send them off into their own grief spiral.
If your loved one is looking for parents or a spouse who died years ago, I walk through how to respond in why people with dementia think they’re living in the past.
Why Lying to Someone With Dementia Feels So Wrong
I think when most people struggle with the concept of lying, it’s because they aren’t viewing it through the lens of dementia.
When we were growing up and everybody taught us that lying is bad, I don’t think anybody was thinking about a person with dementia who is living in a different reality than us.
And as I’m sure you’ve already experienced, trying to get that person to understand our reality, believe our reality, be convinced of our reality, just makes them more upset, more distressed, more anxious. And it likely makes your role as the caregiver much more difficult as well.
Choosing Kindness Over Truth
You can decide and do whatever you want to do. I’ve said it before and I’ll say it again: there is no one right approach to caregiving, except for a dignified approach. An approach that cares for the person with dementia. How the specifics look is going to be different for each and every person.
If you’re wrestling or struggling with this, I’ve talked to many of you about it, and some of my Care Course members have felt extreme relief from thinking about it this way. Not as lying or truth telling, but as choosing kindness over truth.
So instead of asking what the most truthful response is, ask this: what is the most kind response, the one that can relieve some of their distress?
Sometimes the kindest approach is the one the general population would call lying.
Making that choice in the moment, over and over, is easier when you can talk it through with people who face the same questions. Inside the Care Collective, we work through moments like these every week in our support rooms: what your loved one’s reality looks like from the inside, what to say when it doesn’t match yours, and how to make peace with the choices you make along the way. You can learn more here.
