Podcast transcript:
Connecting with Care: Effective Communication Strategies for Loved Ones with Dementia
Candace Dellacona: Welcome to the Sandwich Generation Survival Guide. I am your host, Candace Dellacona, and I am thrilled to have with us today Denise Scruggs. Denise is the Director of Education at the National Council of Certified Dementia, and she was kind enough. To spend some time with me today, and we're gonna talk about the best ways to effectively communicate with our loved ones who have dementia.
Candace Dellacona: So welcome, Denise. Thank you. It's great to be here with you today. I'm so happy to have you here. I think you have so much knowledge on this topic, and so many of our listeners are going to have so many questions that you're gonna answer. And the best ways to really get the message across, if you will, to our loved ones with memory impairment.
Candace Dellacona: So why don't we start at the top and we'll talk about the basic human need for communication and why as humans we
Denise Scruggs: need to communicate. Sure, sure. Well, first of all, we know that commun being able to communicate or socialize with somebody else, that's as important as exercising and eating healthily, uh, because we need it for our mental health.
Denise Scruggs: And it is all good. So good for our cognitive health because we work our brains anytime we're talking with somebody or interacting with somebody. So what a great way that we can interact with our loved ones and keep 'em at a higher level of ability just by engaging them in a conversation or even if they can engage in a conversation verbally with us, that there.
Denise Scruggs: Indicating that they're following with us or they're looking at pictures with us and they're actually engaged with us. That, that to me is exciting to see. But we also know too, that if we don't engage with somebody, we failure to thrive. Yes. It's sort of like the child that's born, uh, early and in the incubator and we have people that are volunteers coming in and sitting with them and talking with them and touching them.
Denise Scruggs: You know, it doesn't change for us as we get older either. Uh, we have to make those connections. If not, we get lonely. We feel isolated, and we can even get depressed.
Candace Dellacona: I can see that. I mean, I, spending a day or two alone, sometimes you start up, get lost in your own thoughts. So I I'm, I'm with you on that, Denise.
Denise Scruggs: Oh, definitely. And you know, COVID really, really hurt people who had dementia or who people were alone because that made the dementia progress more quickly because people didn't have someone to talk with. Or to interact with as much. And that's one of the, the, again, shows us how important that communication with other people would be for all of us.
Denise Scruggs: Yeah. It's part of who
Candace Dellacona: we are. And, and so, you know, the troubling part is that as our loved ones progress in their disease of memory impairment, whether it be Alzheimer's or Lewy body
dementia or, or dementia, any number of memory impairment issues. It interferes with their ability to communicate with their loved ones.
Candace Dellacona: So let's talk about that.
Denise Scruggs: Well, and one thing that we know is it changes how the person with dementia communicates. Yeah. Whereas we're having this conversation and we can chat and we can have a really deep conversation where the dementia person with dementia, it changes Totally. You know, might be less words, more nonverbal communication, uh, but particularly dementia affects how we concentrate.
Denise Scruggs: Okay? Our ability to focus, it affects our memory. It, it might cause more confusion. We might even hallucinate if we have dementia, and that affects a lot of how we respond. For example, we might not be able to complete our sentences. We might not be able to find. Words. Right. And I'll give a real example, and I've mentioned to, to several people, you know, I had a brain aneurysm myself, so I have what would be called mild cognitive impairment, which is is the first step before you might actually have Alzheimer's, uh, where you have trouble finding words and so on.
Denise Scruggs: But what happens with a person in actual dementia, it's a lot more difficult, right? They become quieter, they have less, they're, to hear and understand what we're saying gets more difficult and to be able to respond back becomes more difficult. Also, we, for example, they might be cold and they start shivering, right?
Denise Scruggs: And you're looking at 'em and you're thinking, well, they're cold, but they tell you how hot they are. 'cause two, they might have difficulty finding the word. We can look at 'em and say there's goosebumps on their arm that's probably not hot. And we touch their skin and it's cold, so we know that they use the wrong word.
Denise Scruggs: Yeah. Yeah. So as a caregiver, we have to kind of look at that and say, what are they saying? And not only look at what their words are, are saying, but what is their body showing us? Yes. What are the nonverbals showing us? So we start learning to communicate with that. Another thing that we know is it might take longer to process information.
Denise Scruggs: Sure. So what we have to do when somebody says something to us, it has to go into our brain and we have to figure out what they see it and then we respond back. Or we do what somebody requested.
Candace Dellacona: Yep.
Denise Scruggs: Now we do it fairly quickly ourselves. Person with dementia has a whole lot longer time. To hear what we've said process, what we're, what they, what we've said, and then to make a response to that.
Denise Scruggs: Yeah. It can take up to a minute or longer. Yeah. Yeah. Uh, for them to do it. And what makes that difficult is because they have such a delay. In answering. Sometimes we might walk away, we might repeat the question. Mm-hmm. We might ask other questions. And
what we don't realize we've done is we've disrespected them or we've said, your answers don't matter.
Denise Scruggs: Or we frustrated 'em and they kind of get mad. Say, I just, nevermind. Don't listen. I don't care. Right. I just walk away from us because they've just shut down. Right. And what we don't realize is we created that. 'cause we kept asking questions.
Candace Dellacona: Yeah. And conflating whatever it is they're trying to process. I mean, it's interesting.
Candace Dellacona: I, I had a conversation once with a physician, a neurologist, and he said, have you ever been in a, a loud restaurant and you cannot decipher all of the conversations around you. That oftentimes is what a lot of people with dementia are going through. They're trying to pull apart the words, recall the words, and, and you know, really hear what the question is.
Candace Dellacona: So the patience, I think, I mean, if, if that could be a theme, obviously for caregiving, I think patience is pretty universal, isn't it, Denise?
Denise Scruggs: Oh, definitely. Yeah, definitely. And kind of going with the flow to go with that. Yeah. Yeah. And slow 'cause you know, slow down. Yeah, yeah. Just slowing down and, and learning to go with the flow with that too.
Denise Scruggs: Uh, and knowing again, that there's gonna be delays and that they're not doing it deliberately. Yeah. Oh, good point. They're not doing it deliberately. This is all the dementia. You know, when my mom had her issues with dementia, I had a mother and a grandmother with dementia. Right? And mom could, you know, it would be so frustrating sometimes I'd have to leave and I would find myself reminding myself over and over.
Denise Scruggs: It's not my mom. It's a dementia. It's not my mom. It's a dementia. It's not my mom talking to me like that. It's the dementia. Right. Creating that situation. And, and it was a good reminder for me, uh, to know sometimes when I got frustrated, uh, especially when we had to take her to a doctor or something had to happen, and then yeah, she, she had a different idea of what was going on.
Denise Scruggs: Uh, you know, all those things added to that. So patients, well they say patience is a virtue. It really is when we're caregivers.
Candace Dellacona: Absolutely true. I mean, you know, and, and that sort of leads us into the conversation about. Dementia patients sort of grasp on reality, if you will. And you kind of mentioned it at the top, right, where one of the things that dementia causes is significant confusion depending on how, how far in one is to their diagnosis and hallucinations.
Candace Dellacona: And so I know a lot of our listeners struggle with. Mom or dad saying, you know, it's Tuesday, or I wanna go home and they are home. Or, you know, you gave a great example of saying that the sky is pink, but it's blue. Yeah. So what is your advice to the loved ones who are perhaps correcting or, you know, responding in this situation?
Candace Dellacona: What's the best way to handle that, Denise?
Denise Scruggs: Sure. And I think the best way is to go with the flow. We go to where they are. You know, we're not gonna convince 'em. If they look out the window and they tell us What a beautiful pink sky, we're not gonna, they're not gonna believe us. When we say it's not pink, it's blue.
Denise Scruggs: Uh, they're just gonna get mad. You know, because why are you lying? Why are you saying that to me and their world? They see pink. Yeah. We're never gonna make 'em see blue. Yeah. And what we, when my grandmother had dementia back in the seventies, that was what we did. We called that reality orientation, and we were told that you need to bring them into the real.
Denise Scruggs: If it was Friday, you tell and you argue with them if they thought it was Saturday to help 'em realize it's Friday. Well, all that did was create anxiety and tears. Sure. And stress. Nobody had a good day when we did that. Nobody had a good day. What was that called, Denise? What? What? What was the reality orientation is what we used to call it.
Denise Scruggs: And we had to bring them into what the real world is. Got it. And now the thought is we don't do that. We don't have to do that. Does it matter if it's Monday or Friday? No. No it doesn't. Yeah. Does it matter if the sky is pink or blue? No, it doesn't. You know, so we have to learn to be flexible and kind of go with the flow and uh, you know, so if they say it's a pink sky, I might say yes, it's a beautiful sky.
Denise Scruggs: If I didn't want to go with a totally and say, use what we call now therapeutic line and say, yes, it's a beautiful pink sky, no one that, it's not, that's therapeutic lying. When I go where they are and I say, yes it is. And I know that's not reality. But sometimes we do that and that's okay. And, and if we don't feel that we could do it to that way, we just say, yes.
Denise Scruggs: That's a beautiful sky.
Candace Dellacona: Yeah. So, so the, so therapeutic, lying. So when, you know, I have had a lot of adult children sin, which generation members who are, you know, feeling badly when they say, well, the house was sold and mom keeps saying that she wants to go home, the answer really is what, what is kind? And, and that therapeutic lying.
Candace Dellacona: You know, is is maybe the answer for people to make them feel better because I, I get why they don't wanna misrepresent anything to their parent. But at the same time, if it just causes an anxiety and stresses you point out, there is no point. Right?
Denise Scruggs: No, and and I always say it's a need to know. Yeah. Need to know, to know their house was sold.
Denise Scruggs: If we know they're never going back. Absolutely right. Do we need to say that you're gonna be here forever? Maybe they're not. Yeah. Maybe we'll take 'em home again. Well, you know, they're here now and you don't need to worry. You're here today and, uh, we want you to stay here for a little while. We don't have to say you're never going home.
Denise Scruggs: Yeah. Right. Yeah. But, but you know, we live in the moment at that point. We don't have to to create that angst. Yeah. I'll give you a real story. We had a, a situation where a gentleman's wife, uh, passed away and the family wanted him to know his wife passed away. He was in about middle, early to middle stage dementia.
Denise Scruggs: And what happened was he just got more angry and angry and, you know, if we've ever heard that. Said to us that we've lost a loved one. It hurts. Yeah, it creates a lot of emotion and a lot of the feelings. Well, he, he felt those feelings, but he kept forgetting that his wife passed away, so he kept going over those feelings again and again.
Denise Scruggs: Within days he became. Angry. Within more days he became violent and within even more days, he thought about suicide. He had periods of clarity. He was think thinking about committing suicide to be with his wife. Right. And all because they wanted him to know that his wife had passed away. Right. So he was hearing it for the first time.
Denise Scruggs: Every time. Every time. Can you imagine 30 times getting that information in a day and those feelings building up and you don't understand, you still have those feelings even though you don't remember why you feel it? Absolutely. Oh my gosh. That's why we don't, that's why we have to be careful do it. You know, some things we don't say and something like that, we may want not to say.
Denise Scruggs: Yeah. To the, to be kind like you said,
Candace Dellacona: and you know. So that is a really great example of a big life event that one would think you should inform the person, but to your point, to what end need to know, I love that sort of mantra. And you know, I think a lot of our listeners too struggle not only with the alternate reality may be of their loved one with dementia, but the repetition, right?
Candace Dellacona: And the short-term memory issues. So you know, what's your best advice when. A question is asked repeatedly in a lot of different ways, or maybe in exactly the same way. How do you handle that best, Denise?
Denise Scruggs: Sure. Well first of all, uh, they're asking it because they're having short-term memory problems. Right.
Denise Scruggs: So they forget that they've done it and, and you know, we do it verbally or we might do it 'cause we come to dinner five times and we tell you, I need, I'm here for dinner. You know what it is? I forgot I already ate four times, or I already ate and sit down at the table. So you're not gonna convince me. So you may have to gimme crackers one time.
Denise Scruggs: You may have to give him a dessert later. You might, you know, you may have to feed me five times. 'cause I, you're not gonna convince me I've already been at the table. Sure. If I think I need to eat. So, uh, so what we usually would say when somebody's repetitive, sometimes there's little things that we can do, but mainly we wanna act as if it's the first time they've said it.
Denise Scruggs: Okay? So we respond as if we've never heard that question. We don't say, we've already told you 10 times. That it's two o'clock in the afternoon. Yeah. Yeah. We don't say
that. Instead, we act like we've never heard it and we tell 'em it's two o'clock in the afternoon. The other thought that we have with repetitive verbalizations, that's what we would call that, okay.
Denise Scruggs: Is that we would think of other things they could do with their mouth. So maybe we give them their favorite snack. So now I'm eating, I might not keep asking you that question, or maybe if I'm humming or singing or whistling. Ah, I'm not gonna keep asking you the same question. So thinking other things they can do with their mouth instead of asking that same question.
Denise Scruggs: So sometimes it's just a change of scenery. Yeah. I get up, I get up with my loved one from what the sofa and I go over to the dining room and we walk over and we get a snack, and then we redirect in a different way. We talk, talk about something else, and we start singing their favorite song or we put music on.
Denise Scruggs: That may stop those repetitive questions.
Candace Dellacona: That is a great tip. I mean, you know, caregiving is hard enough and, you know, I understand why the repetition can sometimes be hard to take, especially if it's gone on for quite some time. But what a great tip that the distraction and, and, you know, using the mouth in a different way.
Candace Dellacona: I, I, I mean, I think that's terrific. So. I mean in terms of, you know, the other sort of barriers and, and hurdles with communication and, and as caregivers, we, we, you know, we're all guilty of this, right? Where we sometimes make assumptions about what our loved ones can do, can do. We're trying to protect them.
Candace Dellacona: We don't want them to get hurt or, or, you know, feel bad. So, you know. Do you have any tips, Denise, about. Those things that our listeners can do for their loved
Denise Scruggs: ones. Sure, sure. Well, like you said, one thing that we have to be careful of is not to become, if we put, uh, you know, um, buy into stereotypes about dementia.
Candace Dellacona: Yeah.
Denise Scruggs: For example, if we think they don't know. We may not talk with them as much, or we may not give them opportunities that they still could do because we think they don't know or they can't do. So we're not giving 'em opportunities. I'm not gonna try to talk with them 'cause I assume they can't. You know, I've seen people that are very quiet, hold their head down, not talking to many people, and when we put music on, they're singing every song, every verse of a song they're able to articulate.
Denise Scruggs: After you put the music on, they're talking with other people, you know? But they've just been in that mode where they've just been really silent. Yeah. Uh, so, you know, not making those assumptions, because again, that can get in the way of what we do, but we do get protective, right? We love 'em. We wanna take care of 'em.
Denise Scruggs: We wanna put 'em on the couch. We're gonna take care of you. Now I'm gonna, I'm gonna take care of the house. I'm gonna take care of all the bills. I'm gonna take care of everything you need, and you just sit there and enjoy life. But what we don't realize is we're taking away their lives. Yeah, yeah. We're making the dementia go faster.
Denise Scruggs: Progress faster because we're not letting them, uh, be involved in life. And there's two ways I say we leave this world, we live to the end. Yeah. We sit on the couch and we mark the days off till it's over. And our goal for a person with dementia as well as ourselves, right? We wanna live to the end, to that last moment, we get the most out of it.
Denise Scruggs: And people with dementia can still do that. They could still that do that if we give them the opportunity. So even though they're not talking with us as much, they could still laugh and giggle and so on with us. And I'll just share the one, one, um, uh, example that I, I think I've mentioned, uh, before. Uh, when you and I have spoken, uh, you know, I had a person that I went in with a bad haircut one day and it was obvious I had a very bad haircut.
Denise Scruggs: I was about two inches longer on one side, you know, and I asked my husband the night before, do I look okay, well, you know, of course he said, yeah. Well, I could look at the mirror. I, I, he couldn't have won. Right. I was mad that he said I looked okay and I knew I didn't. Exactly. And, and if he just said I looked bad, I'd been mad there.
Denise Scruggs: Well, what'd I do? I was running a memory care community at the time. I walk in and there's one of my residents of middle stage dementia. Never said much verbally. Well, when I walk in, she tilts her head to the left. She tilts her head to the right, like, something's wrong here. So I pat my head and I said, I had a bad haircut.
Denise Scruggs: She shakes her head violently. Yes. I said, my husband said it looks good. She shakes her head violently. No, it doesn't look. Good. And then I laughed. I said, well, he'd have been in the doghouse every way, and she just started giggling. Giggling like a child, and we started laughing. I said, you know, even couldn't have get out the dog house.
Denise Scruggs: So we did that probably 20 times that day, that same conversation, because she forgot she asked it, right? The next day we went through it again about another 10 to 20 times she started taking her fingers and putting them like scissors. In front of my hair. Interesting saying You need a haircut. So I'd look at her, I said, I need a haircut, don't I?
Denise Scruggs: And she kept putting her scissors up in my head. I said, I said, yeah, I need that haircut. So when I came in the third day with a haircut, she approaches me, her head goes a little to the left and right, because we really, I. We've been connected, uh, uh, 40 times, at least in two days. She, and so, so she knew something was different, but she couldn't figure it.
Denise Scruggs: So I tapped myself on the head. I said a hair. I said I had a haircut. Do you think it looks okay? And how many times do we ask our loved ones their opinion? Yeah. They still have opinions, right? True. So, and you know, they may not say it as much, they may not come out as much words, but I can say, do you like it?
Denise Scruggs: And so I said, I had a haircut. And I said, do you like it? She nods her head yes, and gave me a kiss on the cheek. So did we communicate?
Candace Dellacona: Absolutely. You did, did we could connect. Yeah, absolutely. You had joy because there was laughter, there was a connection over the shared experience of having a spouse rubber stamping, bad haircuts, I'm sure.
Candace Dellacona: Definitely. But that is, that is an amazing anecdote, right? Because in that little sort of retelling you, you sort of demonstrated how the communication may not have been what it was. 10 years ago. But it's, it's different,
Denise Scruggs: but it's still there. Definitely. And they don't lose the ability to communicate. It just takes different forms.
Denise Scruggs: Got it. I love, yeah, now taking different forms. Different
Candace Dellacona: forms. Yeah. So looking, and that's just one example. Yeah. Yeah. And so looking to those cues to really understand maybe what they're thinking or feeling and acknowledging those cues and, you know. One of the things that you said to me, which I thought was so important, and we're so focused when people have dementia, their progression from a neurological perspective, right?
Candace Dellacona: And one of the things that you share with families is you need to keep up on other things too, with respect to the person who has dementia, their vision and their hearing, because those two senses greatly impact. The person's ability to communicate. So can we talk about that a little bit?
Denise Scruggs: Oh, definitely, definitely.
Denise Scruggs: And you know, even the newest research says if we don't work with hearing or a person with or without dementia, that they're at a higher risk of dementia. Dementia could progress more quickly. The hearing is the hearing interesting. Wow. It's kinda like being alone in a room when you can't hear, you could be around 20 people and it's like you're sitting in a room by yourself all day and around and you're not connecting with anybody.
Denise Scruggs: Right. So it, it really has a profound impact on your cognition. So, you know, I'll give you a real, real life example. Um. We can make assumptions based on somebody's not being able to hear us. I, I did a program in a memory care community one time, and my husband went with me and helped me set up, and he went to leave and he has profound hearing issues who, and he refuses to do something about him.
Denise Scruggs: He is very vain about that. I'm not gonna do it, I don't need to do it. And, but anyway, they wouldn't let him outta the memory care because they were talking with him. He couldn't understand the questions and he was answering the questions incorrectly. So they did the right thing and they asked him, where do you want to go and tell us what you wanna do?
Denise Scruggs: And different things like that. Before they brought him back into me, and I could say, that's my husband before he left the facility, and that was somebody who has no dementia, but because he had the hearing issues, he could not communicate. Right? Now you have the similar thing happen for a person who has dementia and still cannot hear too.
Denise Scruggs: That makes that communication even harder. Absolutely.
Candace Dellacona: I mean, uh, you know, being able to hear what's going on, even if it takes you longer to process is the first step, isn't it?
Denise Scruggs: That's right. And then vision too. Yeah. Person often hallucinates because they can't make out what's around them. I look at a coat rack and I think it's a man standing over there looking at me.
Denise Scruggs: Yeah, true. And we've actually had that a number of times where they see a FICA tree or tree in the corner, a coat rack or something tall and they think it's a person because they trying to make out what that tall thing is over there. They can't figure out what it is, or they'll, they'll make, they can't make sense of it.
Denise Scruggs: Or they hear voices in the TV that they can't see and they think somebody's coming to get 'em because they've heard the news. Yeah. And they trust. That's idiot. Yeah. That's why we always say, you know, with the news too, is something that we have to be careful as a person gets, uh, going through dementia.
Denise Scruggs: You don't, you have to be careful not to share the news because they can't. Separate that from reality. Mm. My grandmother, for example, before we knew not to do that, would would, after she would see something about a war, she would say there were men out coming after her. That there were people standing at the window of the kill her, uh, and so on, because she also didn't recognize her own face.
Denise Scruggs: So when she look at the mirror, back then, we didn't know that either. She would look at the mirror and think people were watching her. Oh my goodness. She'd think they were, that were coming at her or she'd look out the window and it, when it would be dark outside and light inside, she'd see a reflection and think people were after her.
Candace Dellacona: So really not being able to distinguish. For example, you bring up a war in Ukraine and someone thinks that could think that there's a war here because they're not able to process it in the same way we are. Distance, time, all of those things. That's a really good
Denise Scruggs: point. Or hearing somebody yell or scream or something on tv.
Denise Scruggs: Yeah, that, that, yeah. They're just trying to make sense of the world around them. And when we have dementia, it's difficult. So we can say, oh yeah, that's just a tv. They don't have that ability to, to differentiate what's going on. Absolutely. And that's what makes it scary.
Candace Dellacona: Yeah, for sure. And that's the last thing is loved ones we want.
Candace Dellacona: Right? We wanna make everything comfortable and calm for that. And you know, one of the examples that you brought up too is how important it is. That you, when you look for visual pews, they may share certain feelings with you because they can't communicate or you see something in them like getting angry for some reason.
Denise Scruggs: Yeah, and you know, I, I love what, uh, Barney Fife used to say. And, uh, Andy Griffith. And, uh, this is showing my age here, uh, because we used to watch it when I grew up, but, um, war Fife used to say, nip it, nip it in the bud. So the whole fit, and I use that all the time because for us working with our loved ones Yeah.
Denise Scruggs: Or us working in, in a community as a professional, you know, the more we can notice when somebody's not their normal self, we call it their baseline, then they're not their normal self, then we need to ask why. So we're looking at it. Are they showing more happiness? Are they showing more anxiety? We look at their hands, we look at their mouth.
Denise Scruggs: We look at their eye contact. We look at their body language. We listen to the words and the sounds that they use. We look at how they move their body. You know, this is all telling us something. We just have to learn to read it. Then we also have to learn how to, to use our body positively so that we are creating a positive message and creating a positive relationship.
Denise Scruggs: And there's ways we can do that too.
Candace Dellacona: And keeping, keeping the calm for them. And, and you know, I guess in, in some ways they're probably watching your cues too, if that's what they sort of understand. So I guess being very cognizant of, of those things too. I mean, it, it makes sense, right? Where. If you are not able to communicate with someone, you know, in your every day you feel frustrated, you could get angry, especially if you're hungry and you can't talk about being hungry.
Denise Scruggs: Right? Oh, definitely. And, and we go back to, to our natural instincts that from, since we were ever in humans, that it's fight, flight, or freeze. So I'm either gonna run. I'm gonna freeze or I'm gonna fight if something scares me. And that's where they're just operating and trying to figure out, are you safe?
Denise Scruggs: Are you somebody I can I, I'm okay with, is this environment okay to be with or not? And I'm gonna do one of those three things.
Candace Dellacona: Yeah.
Denise Scruggs: Or I might feel comfortable and then I'm okay with the environment. So that's the fourth thing.
Candace Dellacona: Yeah. Amazing. I mean, you know, I, I think what our listeners would probably want, and you've given such great advice so far, is.
Candace Dellacona: What are your sort of real world suggestions or, or tri tricks of the trade, um, for getting our loved ones with memory impairment to help us communicate? What are the, what are the best tips you have, Denise?
Denise Scruggs: Sure. Well, first of all, we, as much as we can smile, you know, where they used that they smile in the world smiles with you.
Denise Scruggs: Yes. Uh, you know, and that's true, right? It, it, and it shows we're friendly. We're not in a bad mood, we're safe, uh, you know, and it makes a person feel comfortable. Uh, so approaching with a smile and sometimes we might have to take five seconds or five minutes and we need to step aside and, and deep breathe and all before we go back because we're just, our nerves are just so shot because of how the day gone.
Denise Scruggs: Sure. And we've been there many times. Yeah. Uh, and, uh, before we come back. But the other thing too is that, uh, we wanna make sure that they see us and they know we're there before we start talking. Okay. Because if we're, if we go in and just start talking, they may not have caught us at the beginning and now they're in the middle of a sentence and they're having a hard time understanding what we mean.
Denise Scruggs: So when we go in and we're saying Good morning, or we're seeing our loved one filing. Above you and, um, getting on their eye level so they don't feel nervous. Mm-hmm. It's, and uh, you know, if they're sitting, we sit. If they're standing, we can stand or we kneel in front of 'em if they're in a wheelchair, uh, we know that's important because that creates a level of comfort and creating the good environment.
Denise Scruggs: If there's the TV on and people talking and phones are ringing, it's hard to focus on what you're saying and it can get a little overwhelming, and I might just blow up because I'm just overwhelmed by all this. Absolutely. My grandmother, for example, had that happen in a long-term care community and through her dentures at somebody because there's too many people.
Denise Scruggs: Yes, and too much going on. She created a, a, a scene in, in a long-term care community by thorn or dentures at somebody. And by the time they came in there, four people had their dentures out there. Oh my gosh. And she got kicked out of the long-term care community back in the seventies because of it. Oh.
Denise Scruggs: But what it was, she was not used to all that noise and all those people and all that stuff going on, and we never thought about that. And we have to consider what our loved ones used to. Are they used to being around people? Are they not used to being around people, you know, and, and again, creating that optimal quiet environment, watching what's going on in the background.
Denise Scruggs: Uh, so it's not too cluttered, not too many people talking, right? So they're not so distracted and even having good lighting so they can see us,
Candace Dellacona: they could see your face back to the visual. Yeah. Yeah. I mean, you know, just, you know, when you went back and, and we talked about taking a breath and allowing.
Candace Dellacona: Them to process what you're saying. So, you know, being sort of calm and getting down to their eye level and giving them an opportunity to respond to us before maybe we jump back in is such great, great advice in the calm environment. You know, going back to the background noise, I'm, I'm gonna be 50 and I can barely decipher words in a large setting, so I can't imagine how it would be to have dementia on top of that and maybe not be so great hearing as well.
Denise Scruggs: Definitely, and definitely and, and keeping in mind, again, they're just trying to make sense of stuff and it's overwhelming. They're trying to focus and when we can't, like you mentioned that example being in the restaurant, that they have less ability to focus. Sure. That restaurant than we would, and we have difficulty with it.
Denise Scruggs: And it's remembering that, uh, you know, with them and, and again, paying a close attention to, uh, you know, what they're saying or again, what their body language is. Mm-hmm. Using simple words. You know, I one person once said that people get diarrhea of the mouth and we just keep talking or we use a lot of long words, you know, for the person that we love.
Denise Scruggs: It might be just go in and say, mom, I love you.
Candace Dellacona: Yeah.
Denise Scruggs: Mom, I have it's breakfast time, right? You know, not, do you wanna come to breakfast? I might go in and say, mom, it's breakfast time. Sure. You know, and the fewer words make it easier to understand. So watching my conversation and, and, uh, keeping it as simple as possible.
Denise Scruggs: And sometimes we're using pictures. One of the things we did a lot of and and have done a lot, and I did it with my grandmother especially, we knew she loves, uh, say Coca-Cola and orange juice, and she couldn't find the words. So we would, we had a, a, a photo album and we cut out pictures of orange juice and Coca-Colas and we'd say, granny, do you want Coca-Cola or orange juice or water?
Denise Scruggs: And we showed her the picture while we talked about what, and she could point to the picture what she liked. What a great idea. And it's thinking, you know, how do we communicate with their eyes, with their ears? Yes, yes. With their nose, with their mouth. Yeah. And with their touch. Yeah.
Candace Dellacona: And that's, you know, that hails back to the advice that you just gave, saying there are still things that, that, you know, people with dementia can do, like choose whether or not they want Coca-Cola or, or orange juice.
Candace Dellacona: They may not be able to recall it without the picture, but giving them the picture allows them to still communicate. So you are empowering them.
Denise Scruggs: Definitely. And, and you know, we can make it simple. And that's what we always did. Uh, you know, with my grandmother, she needed, 'cause she was later on in the dementia, but we could put two pictures or three pictures to the side and she could pick usually between two to three things.
Denise Scruggs: Wow. And then we were able to do that and then let her communicate longer what her, what she wanted Absolutely. As much as possible by just pointing, validating their feelings. Yeah. Yeah.
Candace Dellacona: And really validating. And, you know, the, the reassurance, and I know you have an example of. Making sure they feel validated.
Candace Dellacona: Sure.
Denise Scruggs: So I wanna give you just an example. If, if you went to Walmart and you couldn't find your child or the child that was with you Yeah. And you start getting anxious and you can't find Johnny. I can't find Johnny. Where's Johnny? I'm getting nervous. I, in my world, I can't find Johnny. Where's Johnny? I gotta find him.
Denise Scruggs: And you come up to me and I, and my name tag says, Denise Scruggs, Walmart. What? Manager? And you come up and say, Denise, I need your help. I can't find Johnny. I've gotta find Johnny. I don't know what's gonna happen. I gotta find Johnny. And if I put my arm around you and said, come, let's go sit down and have a glass of tea.
Candace Dellacona: Yeah.
Denise Scruggs: How would you feel? Yeah, much better. Yeah. But would you even feel that I validated you? Because I didn't say, tell me about Johnny. Let's go look for Johnny. We'll, definitely not. Yeah, yeah, yeah. I just said, let's go have a cup of tea and totally unheard what you said you were looking for Johnny. And sometimes we redirect somebody without reassuring them first.
Candace Dellacona: Yeah. And just acknowledging what they've said and whatever their fear is, as opposed to. Okay. You know, I think the tea will comfort them, but if I'm not going to acknowledge what they are feeling, then they're not going to have it resolved in their own mind.
Denise Scruggs: So, yes, knowing you love tea. Got it. Getting the tea that I know you love.
Denise Scruggs: That's good. And I take, but I'm also gonna say, tell me about Johnny, or I may have to go into therapeutic lying. I may have to look for Johnny for you. Yeah, yeah. Okay. I may have to, to say, you know, oh, I forgot. Uh, your husband said he picked up Johnny. Yeah. Or you know, you don't need to worry about picking him up now let's go have our cup of tea.
Denise Scruggs: Right. You know? You know, I may have to do those things to reassure you that he's okay. Right. At that point, I might have to say, uh, maybe I know Johnny's dead. So I don't tell her Johnny's dead, I might say, 'cause that might be what caused the anxiety. Something triggered her thoughts about her son that she missed and that's why she's all of a sudden feeling anxious and gotta find him.
Denise Scruggs: Yeah.
Candace Dellacona: Yeah. So
Denise Scruggs: it's all those feelings going on there. So acknowledging you. Tell me about Johnny.
Candace Dellacona: Yeah.
Denise Scruggs: Or I might even have to look for him again. And then I would give you a cup of tea. Well, let's go sit down. You don't need to worry. Yeah. Everything's taken care of. Now let's go sit down and then I try to redirect you to some positive thoughts.
Denise Scruggs: Yeah. Because we don't know what's actually going on in your mind about Johnny.
Candace Dellacona: Yeah, absolutely. So the order in which you comfort, acknowledging first, comforting second, and then using those positive words so that the person feels good. Exactly. And
Denise Scruggs: some of the positive words, it's just remembering, you know, the words we say can lift somebody up.
Denise Scruggs: Yeah. It can put somebody down. It can show we accept them or not. And I'll give you a real life example. And it's probably, it's, it's a really sad example. It, it really broke my heart. But my mom was in a, in a hospital one time just at, just before she passed with dementia, and somebody made a comment about how ugly her teeth.
Denise Scruggs: She was in middle stage dementia and I think they made it in front of her. Yeah, they had to, and we did find out. They did say it in front of her and they apologized. But what happened was from that point on until the day she died, she would never open her mouth. She never smiled. She would hold her mouth unnaturally closed, and she very rarely talked up until that point, she was still talking with us.
Denise Scruggs: She would laugh with us. She smiled. What they forgot was she's still there. She still had self-esteem. She knew that people said something about how she looked and that she looked bad and it impacted her for the rest of her life. Wow. Until she died. Right. And you know, sometimes we forget. They hear us. So the moral to that story is we have to be careful what we say in front of them.
Denise Scruggs: They're still there. Yes. They're still there. And we include 'em in our conversations. And if they would've said something to us, which we later. With the, the staff on is that we couldn't do anything because it would immediately kill her. We chose not to put her under anesthesia because they said she would never make it if she went under anesthesia and we were doing other things for pain management.
Denise Scruggs: Right. But we, you know, that was a lesson for me because I never realized how much it it was impacting or would impact her self-esteem in middle stage dementia. That was a real aha moment for me too.
Candace Dellacona: Absolutely. I mean, so here you are, you know, sort of. One of the aficionados on communication, and you are also a daughter advocating for, for your loved one and really trying to step into her shoes and, and thinking about all of, all of the people that are similar to your mom, your grandma.
Candace Dellacona: And likewise, I have the same examples in in my own family. And you know, you've talked to me a lot about how important it is. That we communicate in nonverbal ways too. Like you said, facial expression, getting down to their level and eye contact. And if it's somebody that you would always hug, try to hug them and show them affection in a way that they can process if it, if it's comfortable for them.
Denise Scruggs: Oh, definitely. And you know, we communicate without even knowing it in our tone of voice that we use. Go sit down. Right. I'm communicating something. Right. Right, right. But if I say, come mom, let's go over here. Right. See the difference. Absolutely. Right. See the difference and how we would feel if that somebody said that to me.
Denise Scruggs: I mean, whoa. What you not, it's,
Candace Dellacona: yeah, it causes anxiety. It's it's fear, it's uncomfortable, it feels confrontational. All the things.
Denise Scruggs: And we don't mean it, but we get, maybe get frustrated for the day. So we have to really be in tune both with what we're saying and they're saying our tone of voice, the pitch that we use, our facial expression.
Denise Scruggs: Again, smiling, you know, if, uh, our breathing, yeah, we have deescalated, people being anxious. Wanting and starting to get aggressive just by changing our breathing. Yes. And breathing slowly with them and stepping back. And not using words, but just giving them a little bit more space. Getting less verbal.
Denise Scruggs: Mm-hmm. And just calming down, even rocking in a rocking chair. In that, but just doing other repetitive motions and stuff. But not saying anything but just being there. Yes. So again, non-verbally, we can change how things are happening and how, what's going on without saying a word. Right. You know, pointing to something when we are, uh, giving 'em instructions or we're trying to.
Denise Scruggs: To get 'em to mom, pick up the shirt and then I might point to that shirt. That helps her know what we're talking about. You know, getting at our proximity, how close we are to somebody shows we care or not. Sure. But if they're having a bad day, we don't wanna get on top of 'em. Yeah. We step back a few steps.
Denise Scruggs: Yeah. And we again, get quieter. We might just hold their hand. Put her hand out for to hold. Yeah. You know? Yeah. And like talking in a lower tone, right? They can calm somebody just talking in a lower tone. When they get loud,
Candace Dellacona: we
Denise Scruggs: talk lower,
Candace Dellacona: right? In the same way, turning off the television, turning off all of the distractions and the noise.
Candace Dellacona: And, you know, you use the example of the, the photos, which I thought was a great one for visually communicating, uh, and empowering your loved one. But the visual communication is super important with people with dementia.
Denise Scruggs: Definitely, and just things like signage. You've got a loved one that can still brush their teeth, but they forget how to do it.
Denise Scruggs: So maybe what you can do, instead of starting to try to brush their teeth, let them have that opportunity to do it themself and empower 'em. Put a little sign out that says, brush your teeth and put the toothpaste with the toothpaste on it. I mean, a toothbrush with the toothpaste on it. On the countertop.
Candace Dellacona: Yeah. With
Denise Scruggs: a note that says Brush your teeth. Yeah. Yeah. You know, we know too that we can empower somebody, but by putting labels on drawers, like putting an image of a sock and saying socks, image of under clothes and putting brass or underwear on it. Yeah. Yeah. And putting it on there. We can help people find their room by putting even in the home, a sign on the bathroom door, uh, with a picture of a toilet so they can find the bathroom.
Denise Scruggs: Right. Or on their bedroom that's, that's shows their door. Yeah. We've even put their address on a door. That they may not know that's my room door, but if they see their address, they know that's where I go. That's my address.
Candace Dellacona: And so if you're really extending their independence and finding different ways for them to continue independence differently maybe than in the past, but you know, it's really kind of a loving gesture too, right?
Candace Dellacona: To try to figure out ways that empower your, your loved ones with dementia, to feel that feeling of agency that we all want.
Denise Scruggs: And that independence, you know, that's, again, like you say, that's what we want. Now I'll give you one last thought too because, you know, we get real frustrated sometimes when they're not drinking water, right?
Denise Scruggs: We might put a glass of water or something in front of 'em, we'd say, now mom, be sure to drink that. Now if we put in a a a cup, they can't look through and see water or coke or something that they don't recognize. They don't know maybe what to do with that. So we might need to put. Please drink or take a drink on it.
Denise Scruggs: Because if I have a short term memory, you put it and you walk away. I don't know what I'm supposed to do with that. I watch it all day and I don't know what that is unless I see a Coca-Cola signal on it or a Dr. Pepper signal and I say, oh, that's my Dr. Pepper. I need to drink that. Sure. How do I know what's in it?
Candace Dellacona: Yeah.
Denise Scruggs: Yeah. So just that's another way to use that visual communication.
Candace Dellacona: Definitely. And I, I guess the, the last type of communication that you shared with us is the behavioral communication. Right. And you know, when. People with dementia lose the ability to use their words or successfully communicate their feelings.
Candace Dellacona: Certain behaviors sort of follow suit because we're human and we need to express ourselves. So if you can't say it, you're gonna act it out.
Denise Scruggs: That's right. So if I can't say help me, I need to go to the bathroom, I might first of all do it nonverbally. I might start wiggling in my chair. Yeah. I might start fiddling with my bell for my pants.
Denise Scruggs: And, and then if I still have to go and I don't know what I'm supposed to do, I can't get there. Uh, then I might start getting mad. I might start yelling. Yeah, I, I might start, uh, getting more aggressive or something with that, uh, because I'm frustrated and I, and number one, I have to go to the bathroom.
Denise Scruggs: And number two, I'm frustrated. I don't know what to do. Or if I'm sitting and I've already gone to the bathroom and been incontinent, then it doesn't feel comfortable and that's even gonna escalate it a lot more. Absolutely. So we have to remember, behaviors are not somebody trying to do something against what we ask 'em to do.
Denise Scruggs: It's them trying to communicate what their need is. And that should be when we start seeing behaviors or emotions in their hands or their body, what are they trying to tell us if we ask why?
Candace Dellacona: Yeah.
Denise Scruggs: That's the first thing we should do is ask why. And I've heard if we keep asking why up to five times, we can usually figure out what somebody wants.
Denise Scruggs: Well, they're moving their hands. Why? Because they're restless. Why? Right. They're not comfortable. Why? Right. Or maybe they have to go to the bathroom. They're fiddling with their belt.
Candace Dellacona: Yeah.
Denise Scruggs: So if we keep asking ourselves why they might be, 'cause we got, we've learned to read every time he puts his fingers on his belt, that means.
Denise Scruggs: Then we don't have to worry about that asking it five times, but that helps us figure it out.
Candace Dellacona: So we have to look to the behavioral cues to really help them and reduce their stress and anxiety. And, you know, I think it all comes back to that, right, reducing stress
and anxiety and, and communicating in various ways, in different ways than perhaps they had communicated their whole lives and adjusting our expectations.
Candace Dellacona: And I mean, Denise, this has been so enlightening to me, I'm sure to our listeners and. Do you have a couple of little gems that you can kind of leave us with in, in communication and, and all that you do, but I'll let you, Denise, kind of leave us with some wise parting words. Sure, sure.
Denise Scruggs: I just wanna mainly say they're still there.
Denise Scruggs: Yeah. Even if they can't talk with us, they're still there and we still should try to communicate. We can go on and carry on the conversation and have 'em never say a word, but they could still be with us by watching us.
Candace Dellacona: Yeah.
Denise Scruggs: We can communicate also through singing and talking with them, uh, you know, uh, holding hands, uh, patting somebody on the back.
Denise Scruggs: These are all ways that we can show that we love 'em and that, that we care about 'em and we can give them the chance to do that too. And being patient, as you mentioned earlier, that's the key. You know, and I just say sometimes we can't. We try. Plan A and we get it wrong, well, we have to go to B or C and sometimes we have to go all the way to D or F or Z because it might take us a few times till we figure it out.
Denise Scruggs: The good thing is, is once we figure it out, a lot of times it will repeat itself and we know the next time we see something that might help us know what to do the next time, but they, you know, but it might be different. Sometimes they'll change. But most importantly, we, we wanna use those opportunities to connect.
Denise Scruggs: Because we can create moments of joy and where a person with dementia we don't have, we may not go on a week long vacation and have a week full of, of every day, every moment that we enjoy, we might with dementia, have a moment here and a moment there, and a moment over here. Sure. And that has the same profound impact.
Denise Scruggs: Yes, because I may not remember that week vacation. I might remember. This is this person that loves me and cares for me and is there for me, and I'm there for them. I may not remember they're my wife or husband or whatever, or my child, but I still remember they're somebody that, they're my friend.
Candace Dellacona: Yeah, and the moments of joy, I think, I think that's so important.
Candace Dellacona: Whether it's bringing your loved one a piece of chocolate cake 'cause that's what they love, and giving them something to smile about and looking for those moments of joy. I mean, life is hard enough, especially when you know you're losing someone and, and their memory to a disease like dementia, Alzheimer's.
Candace Dellacona: Denise, I cannot thank you enough for your, for your time today. You have provided us with so much information and so many great tips, and I just wanna say thank you again from the bottom of my heart for this.
Denise Scruggs: Well, thank you. Thank you for giving me the chance to come on with you today. My pleasure. My pleasure.
