Episode 72: Words Matter: Language and Dementia

This podcast episode explores the intersection of linguistics and dementia. Dr. Carolin Schneider, a linguist specializing in dementia, discusses how language use can reveal insights into the progression of dementia and the impact of language on individuals with dementia. Dr. Schneider discusses her ongoing research project, The Dinner Time Project, to study language use during dinner conversations with people living with dementia.

To contact Dr. Carolin Schneider, call or text 689-808-4315. Her email is carolin.schneider@uni-due.de 

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Transcript

Robin: Welcome to Informed Aging, a podcast about health, Help and hard decisions for older adults. I'm Robin Roundtree, a former family caregiver. I worked in the home care industry and now I work for the Alzheimer's and Dementia Resource Center.
With me is my co host. 
Hi, thank you for joining us today. I'm Edith Gendron, executive director of Alzheimer's and Dementia Resource Center. I have 40 years of working with adults. primarily with seniors and elders in need. I'm a certified positive approach to care trainer and consultant, and ADRC is a designated positive approach to care agency.
Robin: The thoughts and opinions expressed belong to Edith and I, not our wonderful employers and sponsors. The podcast is a service of the Alzheimer's and Dementia Resource Center. We are not affiliated with the Alzheimer's Association. Before you make any significant changes in your life or your person's life, please consult your own experts.
Today, our guest [00:01:00] is coming all the way from Germany. Dr. Carolin Schneider has worked with ADRC for about seven years and she studies, , linguistics and dementia. We have so many questions and we will ask them right after this.
 
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Robin: [00:02:00] And we're back with Dr. Carolin Schneider. , how are you doing today? Well, thanks for having me. 
Carolin: I'm wonderful. What about you 
Robin: guys? We're good. We're good. And you, permanently live in Germany. Once in a while you come visit us over here in Florida and this is one of your visits and we're so happy to have you on the podcast while you're here.
Carolin: Yeah, it's a great opportunity. I'm here for all of the month to introduce my new project. And I try to come back to the central Florida region as much as I can. 
Robin: Wonderful. So talk to me about linguistics. What does, what does that mean? It sounds like a very fancy word. 
Carolin: It is a very [00:03:00] fancy word for a huge passion of mine.
Um, linguistics essentially means the study of language and we can look at language in very different ways. The way we are usually in contact with language and also foreign languages is in school when we have to learn the the grammar patterns and structures and new words and synonyms and all that.
 What I do is a little bit more the outer circle, what we consider the outer circle of the system of language. It's language and use. So how do we use language or languages and how does it change meaning across different contexts? 
Robin: Okay. So you're also interested in dementia. How did those two worlds combine?
Carolin: So very initially, because I studied English, Spanish, and German back in Germany, um, I had a Spanish teacher who approached me and said, you know, you're a linguist, right? So how come my [00:04:00] bilingual parents who have both the diagnosis of Alzheimer's. Sometimes they speak English, sometimes they speak Spanish, and sometimes they just mix like they used to.
Do you have an explanation as to why that differs across the day or any explanation at all? And I said, well, let me look this up. I'll be back with an answer next week. Well, let me say this seven years later, I still don't have a clear answer, but we have a broader picture as to what can happen if somebody , who's living with dementia speaks multiple languages.
Robin: Now the theory that I've heard is that, um, once you have that diagnosis and you progress to a certain level, you always revert to the first language that you spoke. Is that a myth or some cases that happens? Yes. 
Carolin: It is a myth. But it does happen. So it's not a one size fits all kind of solution. The myth is particularly [00:05:00] sticky because it's easy.
It's, it really makes sense. Like the first in last out. But it is not true for everybody. It very much depends on how you live with your languages. Um, that would, and when I refer to languages, I also mean regional dialect. So when I, in my writing, I refer to it, not as language, but as code, right? So depending on what kind of code you speak, so be it, , a regional variety or even a different language, like English, Spanish, German.
You name it. It would make sense to say, okay, so the, the one that you learned last is the first one to go, but it really, really depends on how you live and feel about those languages. Emotion is also a big part of it. 
Robin: So if you're very proud of the language, like, , the woman I'm thinking of who was in memory care with my mother, was a very proud Italian woman.
She could understand English as the disease went on, but sometimes the first words out [00:06:00] of her mouth would be Italian. Now, You just learn to read the body language and not have to convert back to English all the time. But I just thought that was interesting. She could still understand what was going on, at least I thought she could, but that's kind of my example.
So she did lose some of it, but it would come back, especially if she were talking about home. 
Carolin: Mm hmm. 
. Yeah, home, home is always a big, big part. , and I think we've talked about home, , of not just a word or a place, but a general concept of feeling secure and warm and fuzzy and loved.
Um, and that also comes with the language. Yeah. . But also, this is a positive example, but there are also a lot of negative examples. If you think from my home country, Germany, there were a lot of refugees who decided when they entered the country during World War II that they will never speak a word of German again, even though they were already in their teens.
And so, from a linguistics point of view, [00:07:00] That would be someone who learned English later in life, so not in childhood, but later in life, and that would make them more, susceptible to, , reverting, I don't like, I don't really like that term, but that's what the literature usually refers to, reverting back to the first learned language, so that in that case, it would be German, because they rejected the language emotionally, psychologically, That would not happen.
So those people would most likely stay with English. 
Robin: Yeah. Well, once again, the brain is amazing. 
Edith: Amazing. I'm going to throw Carolin a curveball. Feel free to kick me under the table. Oh, jeez. Robin said something about, , her mom's, um, roommate, um, being Italian and sometimes would, um, use Italian.
And my thought was this when she said that, yes, the, , the Italian lady presumptively had some form of dementia, but we also know that in times of stress, we revert [00:08:00] to that which we know best, which is why smokers who have quit will reach for that cigarette in times of stress, even if it's just emotionally.
So if we posit that the brain is being stressed by whatever form of dementia developed, would that cause that reverting to what they knew best, which would be their first language? Whether it's Italian, English, French, Dutch all right. Going out on a limb here because I'm not a psycholinguist, so I am usually just looking at the language that is produced by the person. So all this is to the best of my knowledge, but depending on when the person learned the language, so I always speak of the first learned language or first one languages because for a lot of folks worldwide, this is really simultaneous, right? So they grow up speaking two or more languages. So this could be, would be a really interesting study.
Um, [00:09:00] and there has been work out there, like in which language do you cuss? Like when you hit your toe or when you drop something, right? So what, what are those reflexes? And yes, technically you're, you're right. I just want to be very careful about overgeneralizing because there are a lot of people for, for them because of the constellation of how they learned their languages that doesn't apply.
, my, um, General feeling, , Just because a person doesn't speak English or reply in English doesn't mean they didn't understand the question or the interaction, right? So, there are a lot of learned patterns that go along with language , right?
So, interactional patterns. Um, a person in my study, , so, From seven years ago, , I was speaking English and the person was replying in Spanish. It worked perfectly fine because that was the language in this, the moment and the situation of the conversation that we both felt comfortable with. And there was no hesitation, no pauses, no nothing.[00:10:00] 
I went back to visit her a second time. She did speak English with me, even though people said that she wouldn't be able to, right? So it's always a matter of how do I feel? And it's also about who am I talking to? Um, so you do hear a slight accent when I'm speaking, right? So we did have common ground as being non native speakers potentially of English.
So she had a slight accent in her English. I do. So that worked out well. And she felt safe. And it's all about how do I feel? Because Language is so intimate you all, but every second you're talking, you're revealing so much about yourself to other people. And that makes you vulnerable, especially if you feel a little bit insecure about your language.
And also because you're living with dementia, you might feel insecure with a new person in the room anyway, then you might want to just speak the language that you most feel comfortable with. Yeah, thank you. Thank you for even entertaining that idea. You have just made a [00:11:00] beautiful explanation, a metaphor for how complex dementia is overall and how incredibly complex language is.
It is, , difficult just with one language and, uh, the more languages to the mix, the more interesting as a linguist, but also more difficult for everybody involved from the community, be it from receiving a diagnosis , Right, what do you do if there are multiple languages in the mix? Do you assess just in one language, or do you assess in all of them?
And do you add it up? And then we also know it's just performance in one point of time. Does that change for the multiple languages? It just, yes. Yeah. 
Edith G.: Yeah. I mean, it's, it's absolutely incredible. 
So let's talk about something that might be a tiny bit simpler, clearer. I don't know. How important is it Dr.
Schneider for someone to very deliberately say person living with [00:12:00] Alzheimer's disease or dementia with Lewy bodies instead of, Oh, that's the patient that's suffering from. 
Carolin: Well, so that is a very, very important question, and it is something that is very dear to me and my own research. I'm going to start with a very practical and, non to non academics, probably not as relevant answer.
, But I'm going to, I promise I'm going to get there. , so this is a fight I've been fighting with colleagues. And, we're slowly but surely making progress because we're working with word counts. And to just abbreviate, Or to just say the patient is less words than saying person living with dementia of the Alzheimer's type or any other type.
Um, so from a practical matter, that was, that was quite a fight. Like, how do we go about this , to do this? And it is really so important because discourse, that is the language that surrounds us, is [00:13:00] shaping our reality.
Robin: Can you just say that again so it can sink in my brain, but the words that we say around us that I hear shape my reality.
Yes. That's, yes. That makes total sense. I just had to let it sink 
Carolin: in. And there is another side to it because we shape discourse. The way we talk. And the language we use is influencing the language that surrounds us. So, simple explanation. Edith started talking to me about people living with dementia.
When I first walked in here, I had a flyer that had said patients on it. I'm looking for senior patients. And that is now looking back. I didn't know better at the time. Now I know better, I hope I do better. , but Edith, just by the way she modeled that language for me, she didn't say, no, you can't say that.[00:14:00] 
She just modeled it to me and I copied it. We had a discussion at one point, I'm like, hey, so I noticed this and I really need to pick up on all the language because this is what I, what I want to do, right? I'm all about language. So we did have an active discussion about it. And. I'm trying to incorporate all the positive language into my language use, into my work, and then again, I try to model it for my students, because also, I teach at university, and I do have a lot of classes about language and dementia, and students, age of 18, 19, 20.
They are very much interested in that. And then now also we have, again, right, they pick up on the language that I use, that Edith taught me. And this is how we slowly change the discourse, the language within the dementia community that surrounds us. So, Language shapes our reality, but we also shape the language that surrounds us.
Robin: And wouldn't you be a [00:15:00] person living with something rather than just a person who's just this? 
Edith: Right. Or affected by, or suffers from, or suffers from. And I always feel ethically compelled to say, I am not dismissing or disparaging the tragedy and the difficulty and the heartache that can go along with developing any one of these illnesses.
Right. We got that. We know that. Let's focus on the person who's living instead of the patient who's suffering. 
Robin: Yeah. I just know for me that leaves room for, Oh, she's living with dementia, but boy, put a kitty cat in front of her and she's going to lose her mind. 
Edith: Right. 
Robin: Oh, I can be two things. I don't just have to be living with dementia.
dementia. So I, that's why I love that phrase. Yeah. 
Remembering always, and it's okay, I'll say her first name, Nancy, who, when she was asked by an interviewer about having Alzheimer's disease, she had developed it at young onset, young onset age. And she [00:16:00] responded, yeah, I have Alzheimer's disease. I forget things.
Who cares? And that to me was profoundly beautiful. Who cares? We care enough to have our very own Carolin come and talk to us about the significance and importance and complexities of languages that intertwines with dementia. You know, Carolin couldn't pick something simple to study like, Linguistics in the common cold, she had.
Robin: Right. A very complex disease that we don't really completely understand, and linguistics, yeah. It does 
Edith: affect the way, you know, we, we teach people in our Dignified Dementia course. Uh, an indication of what the person understands is how they use the language. 
Robin: And with language, the small talk. sticks around. And so that's something that, you know, if I used to spend five minutes with a person and would think they were completely normal, when I get to minute 20, [00:17:00] I'm like, Oh, okay.
We're out of small talk now. There's the first repetition, but you could, you know, sit down with somebody who has dementia 10 minutes, I would think, because for some reason, that small talk sticks around longer. Am I right? 
Edith: It's the rhythm of it. Yeah. When Carolin talks about music, my first thought was, and there's the third incredibly complicated aspect to all of this, because music is, is profoundly complex, but so powerful in the world of dementia.
Mm. So tell us about this new study that you're doing. Talk to us about it.
Carolin: So it's called the Dinner Time Project, and it is new in various ways. Like I. As I mentioned earlier, , my former study was, , moments in time, recordings of moments in time. And that's what we, I don't want to say we have a lot of them because the, the field is understudied.
Um, but what we really, [00:18:00] really, really need is. multiple moments in time of the same person, to be able to really say what is going on. What kind of changes do we observe in the language? , so I'm hoping to start a collection of conversations over dinner.
So that's why it's called the dinnertime project, with people, at their homes over a long period of time. So I'm not asking anyone to overcommit. It's just as long as you like to participate, you're welcome to participate. And it would be one recording . Per month, for maybe 20 to 40 minutes, depending on how long dinner conversations go.
And I'm hoping to have, like, sort of the same routine, within the same care dyad or family situation over the course of time, And could potentially see how those interactions change. So who is initiating questions? What kind of questions are [00:19:00] initiated? Um, how do subjects change? Who's introducing the subject change?
How complex are the sentence structures? If you are speaking a different language at home than English, what kind of languages do you speak or do you speak a specific regional variety of English? I just think that is really interesting. And then, if somebody participated over well, a longer time stretch, we could. See those changes and, yeah, learn more about how to care or how to communicate during care at home.
Robin: So I think this is amazing. We often talk about how volunteers are needed for research. And I think people are going, Oh, I don't like needles. I don't want to do a blood draw. I don't want to take a pill. Yeah, but I mean, come on, putting your phone down and recording the dinner conversation to help understand, um, What's happening with language and happening with [00:20:00] the dementia.
I think that would be 
Edith: globally. 
Robin: Globally. Um, I think this is an amazing opportunity. So if they wanted to get some more information about this study that you're doing, what would they do? They'd reach out 
Carolin: to me. 
Either call, text or email, um, and I'll leave my information. It'll be in the show notes. I will be here till the end of September, but I will make sure to come back.
I am available via Zoom as well when I'm back in Germany. I will always get back to you, just be mindful of the time difference. So if I don't get back right away, I, it might be the time difference, I think it's important to note too, to everyone that's listening, , that Carolin is multilingual. So, obviously German and English, but, , other languages as well. So, and, , If you think that, , the language that you might speak other than English or German, wouldn't count, you'd be wise to rethink that.
Robin: Mm. Yeah. And I just [00:21:00] think everyone today, if you're going to take something away, what I'm taking away is the words out of my mouth really do have an impact on the people who hear them. And so speaking the words with kindness is the right thing to do for me. Yeah. 
The word itself, the tone of voice, the facial expression.
Robin: Yeah. All matters. All right. Make sure to subscribe to our podcast, Informed Aging. Tell your family and friends about us. If you'd like to support the work we do at the Alzheimer's and Dementia Resource Center, please go to the website, adrccares.
org slash donate. You can find us on Facebook, Informed Aging. Today's episode was recorded at ADRC's podcast studio. That's it for now. We're looking forward to our next visit.