In our latest "Ask Me Anything" with dementia caregiving consultant and expert Teepa Snow, we tackled tons of reader questions. Watch the full Live Talk, or read Teepa's answers about communication and dementia below.
In our latest “Ask Me Anything” with dementia caregiving consultant and expert Teepa Snow, we tackled tons of reader questions. Watch the full video of the Live Talk and find a transcript below of Teepa and Deborah’s conversation about guidance for better communication between caregivers and people living with dementia.
Being Patient’s Deborah Kan: I’m going to start with a story within my own family that I want to share with you. We were recently having lunch with my mom who is in a later stage of Alzheimer’s now and she’s losing words, and it’s almost like she knows what she wants to say, but she can’t express it. So, there’s a lot of frustration there. We noticed lately that she’s starting to bang on the table really disruptively. She’ll take her spoon and bang it on the glass repeatedly over and over again, almost like a plea to “Listen to me.” I could see my dad was getting irritated because he was trying to say something and my mom’s like, bang, bang, bang. All of a sudden, Teepa came into my mind, and I turned to my sister, and I said, “Step into her world.” To step into her world, we started banging on the glass with her, and the weirdest thing happened. We’re all banging on the glass, and she started to laugh. I’m like, “Wait, you’re in a later stage of dementia, and you can’t really express yourself, but you get the joke.” How is that? Tell me about that.
Teepa Snow: What happened was, she finally felt heard, because, “I can’t get the words out, but I really want people to pay attention,” and you started paying attention. It was just joyful, and it was funny, but it’s also joyful. “Look, I got them to listen to me, and they didn’t argue with me. They didn’t tell me I was wrong. They just listened, and they came along with me.”
What could give you more joy than to feel like instead of being ignored, or getting frustrated, and somebody’s frustrated back at you, you felt heard? She wanted something, and she couldn’t figure out the thing that she wanted, and what it might have been is just to be listened to or heard or believed.
Being Patient: I can imagine how frustrating that must be. You have thoughts coming into your mind, and you can’t express them, right? It was actually a wonderful experience, just to see her laugh with us, too.
Snow: What happened with a spoon after that?
Being Patient: Oh, she stopped.
Snow: It’s like, “Point made, I don’t need to do that anymore. The reason I needed to do it was that nobody was listening to me. Bow that you’re listening to me. Well, that’s good, and we had a good moment. That’s all I was really looking for is I wanted to have a good moment with you, and I couldn’t figure out how to do it. It seems like when we get together, it’s really hard. Because I know, there’s so many things I could say, and I can’t think of a single one in this moment.”
Being Patient: Someone is writing, just as we were having this discussion about communication, asking about working with veterans that have dementia on hospice— particularly those that have aggressive behaviors and aren’t able to communicate. How do you communicate with someone, whether they’re a veteran or not, who is exhibiting aggressive behaviors?
Snow: He is communicating quite well. What he’s communicating is, “I don’t like or trust what’s going on here right now, and it’s scaring me; or it’s making me angry, or it’s frustrating me,” sort of like your mom with the spoon on the glass. Only this is “when you try to do things to my body that I can’t figure out how to do things with it really gets— augh!” It could be fear of movement, “because when I’ve lost the ability for my brain to move my body and you move my body and it’s [so startling.]”
It would be like somebody came from behind you on stairs and just shoved your body real quick, and it was like, “Whoa.” [It’s] that sense of being attacked, being hurt. Even though that’s not what you’re doing, that’s not why you’re doing it, but the perception from the other side.
If we could quit maybe using the word aggressive and start going, “Wow, really reactive, super reactive, physically reactive.” Rarely, have I seen people out of nowhere [be aggressive]. You lean over them, and you say, “It’s time to get up,” “Augh!” If you scare me, then you started it.
Now, I don’t mean that people intentionally start this negative interaction. But, if I can’t put myself on the other side of the equation, and imagine what would it be like if I were lying down in the bed, and someone was to lean in, and basically get in my face and say, “I’m gonna get you up now,” and the first thing I heard or saw was that close?
My usual recommendation is, let’s take a step back, and let’s see if we can rewind here and see if we can figure out some of the perception that might be happening. Could it be the vision loss? Could it be the comprehension loss? Could it be the loss of the body and the brain to talk to each other? If that’s the case, then I want to assess it before I do anything to the body.
I’ll go, “Deborah! Hey,” because this is a universal sign of I come in peace, nothing in my hand, and then I make an offer to you. If you interpret my offer, and you start to try to do something with your hand, my brain knows your brain, “Aha,” you got it. Now, I can do another motion: roll.
What I try to make sure I have is what we call hand under hand when I do something so that if they don’t like it, the first thing they might do is grip tighter or try to get away. That’s my signal. “Oh, okay, lost them again. Shoot, I thought I hadn’t, lost them,” so it allows me to be tuned in. It’s really a case of tuning in and tuning up, and giving people tiny baby step instructions.
So, Deborah. Right there. I want to see if you could follow my cue to touch your own face. So, how did I break it down?
Being Patient: Was it this motion you’re showing me?
Snow: It is your name! I said Deborah, and your brain immediately went, “Oh, she’s talking to me, right?” So I get eye contact, now I know she’s listening. And then I showed you and I said “right here.” If you did it to yourself, it meant, “Ah ha,” my message got through. If you didn’t do it, and I went right on you, and then I gave you my hand and took my hand to your mouth, it’s less likely to cause you to startle because your brain got the messaging.
One of the hardest things in late stage is people who’ve had previous life experiences like veterans, who have been in situations where they were attacked, there were bad things that happened to them. [If] they aren’t used to women being around them, maybe that close, it can trigger lots of emotional distress.
So, we want to be real careful with ourselves. Because otherwise, it’s easy to blame them and not own our part of it, which is we weren’t thinking as much as we needed to be when we were trying to help, and they’re not able to think. I mean, that’s the sad part. They’re not choosing this, if they didn’t do this before in their life, this isn’t them. That’s the dementia showing itself again. It’s not a choice, it’s what’s left.
Being Patient: That’s a really good point. There’s a question from one of our viewers. She says, my mother was diagnosed with mixed dementia and is now 86 years of age. Should I be concerned that she seems content to sit down all day doing nothing and watching TV? I have seen this before. My mom watches a lot of TV as well. As parents, we don’t want our children to be right in front of the TV all the time. Is it okay with dementia?
Snow: The tricky thing is, what have I got that I can still do? I’m 86 which means I have arthritis more than likely it means when I move it’s uncomfortable. If I have some changes in my eyes, in my hand skills, in my body skills, it’s hard for me to do just about anything, including processing.
When I’m watching on the TV, however, it’s sort of like sitting in the seat of a car and being on a car ride. I’m sort of taking in data passively. For me, I’m at least getting some data. Now, do I think it’s a cool idea to sort of offer episodes of other data? Absolutely. But I think for some people, they’re very satisfied.
Then if I don’t have a helper, who can do other things with them all the time, for that human being, it may be very satisfying to sit in the car seat and watch the road go by now. I do encourage some in between activities that aren’t just self care. I mean, it’s not just trying to care for the body, but actually going, “Wow, look at that.” What I do is I cue in on whatever is on the TV and say, “Wow, that little boy. Oh, hey, Deborah.” Because then I went from paying attention to what you were paying attention to, making a comment on it, and then seeing if I can get you to transition over to me for an interaction. “I can use your help. Five minutes. Can you help me?”
Being Patient: Good advice. So we have another question, too, is asking that her mom is seeming farther and farther gone these days. She said, It’s really sad to see and she has such a hard time getting her words out to express herself, which is common, as we talked about. What can we do to connect, and it’s so hard to tell what information she can actually understand. How do we tell that?
Snow: So there are a couple things you can do. So for instance, with with the situation, what were some of your mom’s favorite songs when she was young?
Being Patient: “I left my heart in San Francisco.”
Snow: Oh, cool. So if I wasn’t sure if she was processing, one of the things I’ll start with, I love my heart in San Fran SanFran, right. And so I’m waiting to see will she fill in the blank, because if she fills in the blank, she got it, she got the messaging of the song. So I’m going back to old, familiar, rhythmic, I’ll start with that one. Hey, Diddle Diddle, the cat and the. And if I get you, there you go. And so you’re, you’re going to sort of come in with that piece. Now, what it what happens is if I can get the right side of your brain, which is the rhythm side to do some of this, then I could say, hey, Debra, come with me. And you get up. What does that mean? You just did.
so what I have to remember for me is because the impairment is significant in the language area, I don’t want to start where it hurts. I don’t want to start where we don’t know for sure whether she’s getting it. I’ll start over in the music rhythm section, the counting section, something that I know she’s still good at, or still has potential to be good at, build on that side a little bit. And then see what happens when I come over here. And I’ll start pretty simple with something to eat. And then and see what happens. Because if when I hold I say something to eat, and I hold this up, what am I looking to happen?
Being Patient: To see whether or not they understood if I would I know? I know. Because she’ll take it and eat it.
Snow: Oh, so she takes it she puts it down in on her lap? What do I now know that she doesn’t really understand what to do with it didn’t quite get that. So next time I’m gonna go hey, Deborah, here. Because what am I giving her now a cue?
Being Patient: Actually, one thing to note with you too, which I’ve noticed is a pattern in all of your answers is you have two languages, you have a sign language, and you have a so you’re giving signals with sign as well and which reinforces what you’re trying to communicate. Right. So I have a question about that is sign easier than words at some point with dementia?
Snow: Absolutely. And it reminds me a lot of when I was very young teenager, I did work with autism, kids with autism. And what we found out is sign language. And children actually babies learn sign language before they learn to talk because the ability to articulate and to get your mouth moved from sound to sound and get to words to come out. But it’s actually highly complicated. I can take in data better than I can get it back out usually. So I get receptive before I get expressive. So what I can do is I can use that. And if I go some deed, I gave you the messaging in a very common signing. And if I need a little more than I add the object, because now it’s not imagining that this is eating, I’m actually showing you eating. And then when I show you yours, and I come alongside, and then you can actually copy me. So it’s a process of figuring out where are you on the ability scale of appreciating what I’m trying to communicate? Yeah, and what are you trying to communicate? That’s,
Being Patient: That makes a lot of sense. I love the comparison too, as well to kids and who have autism to and just makes a lot of sense, right? How
Snow: mean the same areas of the brain are impacted. It’s just for different reasons, in different ways. But it’s the same areas of brain function, the prefrontal cortex and the language center are highly involved.
Being Patient: We have a question: “My husband is 60 and has early onset Alzheimer’s, he doesn’t talk much is that normal?”
Snow: How much did he talk before? I mean, so one of the questions is how social males, as a rule, have a history of not being quite so verbally social as females, unless they have a purpose or a focus. They talk on the job all the time, but as a rule, the rule of males is you got to have something to do together in order to have a conversation. So often, you know, I’ll have guys and I’ll go out to the car, and I’ll say, so you like this ride or not? And they’ll go, Well, it’s a little showy, you know, and it’s like, Well, do you think I should clean the windshield? Ah, probably. But I mean, I’m, I’m not sure whether it’s dementia or just them, you know, because the idea of back and forth. Now, if he was very verbal before, and you’re seeing this as a huge shift, then absolutely his loss of ability to produce language. And that’s not uncommon with Alzheimer’s, young onset means I have to really double check what he’s taking in, because he may have a huge loss in what we call expressive the ability to put it out, but not necessarily take it in, he gets it really well. Or he might not get it at all. And that’s really vital them that we really start using a lot more cueing a lot more information and make sure that people know, you don’t just hand this and say here, go ahead, put some lotion on. I’d want to make sure that we’re going we’re going to do this. Got it. There we go. Yeah, now you got it. Except better, good, good. So I have to, if I want to be successful and have a good match, I’ve got to be thoughtful about noticing what he’s getting and not getting. And language. It’s there’s an actual form of young onset Alzheimer’s that particularly robs people of the ability to speak.