Why People Living with Dementia Use Forbidden Words, and What You Can Do About It

Why People Living with Dementia Use Forbidden Words, and What You Can Do About It post page

By Dan BulgarelliAugust 18th, 2021

Why People Living with Dementia Use Forbidden Words, and What You Can Do About It

By Dan Bulgarelli
Have you ever been taken aback when a person living with dementia suddenly used words that are considered rude, hurtful, or inappropriate? One of the biggest challenges facing those who support and care for people living with dementia is the use of language that isn’t socially acceptable.

Racial or gender slurs, sex talk, ugly, or even swear words can seemingly come out of nowhere from people that wouldn’t normally say those sorts of things. Hearing words and phrases like this can cause your brain to react, and depending on the situation, you might possibly admonish the person that said it.

So, why do the people living with dementia say these things, and what can you do about it? Below are some facts to be aware of, and some tips to help you diffuse uncomfortable situations that may arise.
Listen to the message, not just the words
An image of letters spelling the word "message"When you hear something offensive, especially if it is aimed at you, it is very easy to get upset.

Instead, the next time you hear something like this, try to take a deep breath or two. Then, listen to the tone in which the words were said. Was it said in a curious or conversational tone, or was it said with anger and venom? Both are certainly possible, but let’s dig a little deeper into what we know about how dementia affects the brain.

An image of a brain with the text "language on the left, rhythm on the right"If you’ve heard Teepa Snow or other members of her Positive Approach to Care® team speak, you may have heard the rhythmic phrase, Language on the left, rhythm on the right. We lose on the left and retain on the right. What this means is that the different parts of our brains are responsible for different parts of our abilities.

Vocabulary, speech production, and language comprehension are all typically stored in our left temporal lobe. Social chit-chat, rhythm (music, poetry, prayer, and counting), and (uh-oh) forbidden words are stored in our right temporal lobe.

Let’s go back to the last part of that phrase, we lose on the left and retain on the right. If a person is living with dementia, there is a good chance that the left temporal lobe, the part of the brain they typically go to for language, isn’t giving them the answer they are looking for. Their brain can then redirect to the other side, and what words are found there?

Yep - the forbidden words. These words are stored in a different part of the brain than traditional vocabulary words because when we learned them, we knew they were different. They weren’t to be said around just anyone, if at all. It doesn’t mean we don’t know what they mean or haven’t thought them from time to time, it just means that our brain categorized them in a different way and, most of the time, our prefrontal cortex kept us from using them. With dementia being present, the prefrontal cortex and the left temporal lobe are being lost, which means those forbidden words might not seem so forbidden now.

Let’s go back to my earlier question. Are the words being said with anger and venom, or are they more curious and conversational? Let’s look at a couple of scenarios and think about what the message actually was and what you can do:
**Please note, there are some uglier words about to be used, but I will do my best to keep it PG.*
Scenario 1:
Imagine you’re sitting at a table for mealtime with other people nearby, when your person asks at a volume consistent with traditional conversation, What is that big, fat person eating over there? That looks good.

Your first reaction might be shock or embarrassment, especially if the person heard it. However, reflecting on the tone and actual question, was our person trying to be rude or hurtful? Or is it possible that the words they would have normally used weren’t available and their brain provided something else?

An image of a bunch of black paper cutouts of people with one yellow one in the middleWhen our brains are looking for ways to describe someone or something, it can go to what is most obvious to us, particularly regarding appearance. What are things that can make someone stand out?

Things like height, weight, skin color, hair color or style, clothing, or other distinctive characteristics. These descriptions aren’t always socially acceptable, but the person is not meaning to be hurtful. If we were to admonish them for it, they might in turn feel hurt or upset. However, realize that with their failing brain, they probably won’t be able to make a different choice next time.

So, what can you say when you hear things like that? Let’s look at an example.
  • Person Living with Dementia: What is that big fat person eating over there? That looks good.
  • Care Partner: You’re wanting to know what that person in the red shirt is eating? It sure does look good, you’re right.
Acknowledge the question or message with some of their own words but substitute more appropriate words in place of the ones that could be hurtful. This validates what they said and provides them words to use going forward without drawing attention to what was said or creating an issue.

If you feel it is appropriate, you may want to find a way to discreetly apologize to the person if they heard what was said. You can even discreetly ask someone to deliver your apology along with one of Teepa Snow's Companion Cards.
Scenario 2:
You’re preparing to help someone use the toilet or bathe, or you try to assist them with their pants when they scream at you, Get away from me, you fat, ugly whore!

This one definitely feels different than the first example, doesn’t it? This feels personal and mean, but try to take a deep breath and think about what happened leading up to this moment.

Remember that we learned earlier that the left temporal lobe is where language comprehension is located. So, if you asked something along the lines of, Are you ready to take your shower? or Are you ready to use the toilet? they may have agreed without really knowing what you were asking.

The right temporal lobe is home to the social chit-chat skill, which keeps safe the idea of you talk, I talk and the understanding of when a question is being asked. Many of us, without intending to, provide the answer we’re looking for when we ask a question. How? If I’m asking you to do something, I may nod and smile. Even if you don’t know what I’m asking, you may still nod and smile back. That is the polite thing to do after all.

However, you were asking about removing my pants, and I didn’t realize that. When you go to reach for my pants, well, that sends me into a state of fright, fight, or flight. I want you away from me and I can use words to hurt. I can raise my voice, I can use ugly language, and I can let you know that I do not like this. To you, this came out of nowhere. You did ask permission and received it. The problem is, I didn’t understand what I was agreeing to. When this happens, it is best to back away, wait a moment, and then try again with a different approach.

To avoid situations like these, Teepa suggests providing more visual cues and less verbal cues, particularly if you are in Hand-under-Hand position. Start by making sure you are in an appropriate location, show on yourself what you’d like to do, and have them help you.

In both scenarios, words that are not generally acceptable were used. It can be distressing and even upsetting to hear, but because you are the one with the healthy brain, you can try and listen to more than the words, you can listen for the message.
An image of a looking glass and detective's hatI have provided two examples, but we know there can be many more and different scenarios that happen. I’m hoping we can all work to be detectives, figuring out what message is trying to be conveyed, instead of judging what we heard. It isn’t always easy and none of us will be perfect.

However, working on taking a deep breath and responding to the message will help everyone reach a better outcome. Remember that people living with dementia are doing the best they can. It is our job to support, and even celebrate, their current abilities.
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6 Comments on “Why People Living with Dementia Use Forbidden Words, and What You Can Do About It”

  1. This is an excellent explanation. I fear that the useful jingle “Language on the Left; Rhythm on the Right” may sometimes be misinterpreted to suggest that language is ONLY on the left. This blog reminds us that language is stored in both sides of our brain, but that there is a difference in the type of language and how or why it is used. Left contains communicative language; right contains emotive language. When communication fails, emotion emerges. Just as it does with many people who are NOT living with dementia.

  2. A great explanation, especially for the care partner to better understand the person living with dementia when these situations arise. It certainly will be a great reminder for me to be more patient and not to take these undesirable remarks so personal.

  3. Really helpful, thank you.
    Can you please explain to me about Teepa companion cards? I am unsure what they are.
    I find your blogs really useful don’t know what I would do without Teepa Snow!

  4. Very helpful and the explanation makes sense. Thank you for providing the examples as well. Always hard for the caregiver and/or family when the person says some a forbidden word or two.

  5. Thank you very helpful. I could not understand when my husband cursed when he got upset, frustrated. Now I know & will do a lot of deep breathing and try not to feel upset.

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