Montgomery Smashing The Stigma

Dementia and Alzheimer's - Communication and Connection

• City of Montgomery, Ohio • Season 1 • Episode 13

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In this episode, we explore practical strategies and compassionate insights to foster meaningful communication with loved ones facing dementia or Alzheimer's. Learn how to navigate memory loss, decode nonverbal cues, and create moments of connection through patience, empathy, and understanding. Whether you're a caregiver or family member, this episode offers valuable tools to strengthen bonds, preserve dignity, and discover the beauty of shared experiences amidst the challenges. Join us for an inspiring journey of connection.

Learn more at https://www.alz.org/cincinnati or call our 24/7 Helpline at 800-272-3900.

Amy Frederick:

In this episode, we continue our series on Alzheimer's with Dana Ritchie, program director with the Alzheimer's Association of the Greater Cincinnati and Miami Valley chapters. I'm your host, Amy Frederick, and I'm joined by my co-host, Connie Gaylor.

Connie Gaylor:

Welcome back, Dana, and thank you for coming back to discuss with us how to communicate and connect with someone who has Alzheimer's or another dementia.

Dayna Ritchey:

Thanks for having me back, Connie and Amy. You know, this is a really important topic because when you have a family member or a loved one who has dementia, sometimes the most frustrating part is trying to figure out how to communicate together. It's likely someone you've had a really close relationship with. But as we've mentioned in our other podcasts, you know no two individuals experience the same symptoms or struggles with Alzheimer's, but almost all do struggle with some form of communication, communicating their emotions, getting words Word's out. And that's really hard for their families who are used to this person, have this long term relationship with this person. And now, you know, they struggling to kind of understand each other.

Amy Frederick:

So Dana is communicating something we struggle with in the early stages of Alzheimer's. Or is it just as the disease progresses?

Dayna Ritchey:

That's a good question. Um, actually, even in the early stages of Alzheimer's, you might notice problems in your ability to convey your thoughts and feelings, because finding words can start to be a challenge for some people. That's actually one of the first signs. Um, sometimes we also start misinterpreting what other people are saying, so we might get offended or upset by people, especially if there's sarcasm involved or there's it's meant to be a joke. Sometimes we misinterpret those emotions. Um, we also, in the early stages could struggle in following directions. Basic directions sometimes. And that, you know, can be frustrating because it might look like we don't understand what people are asking of us, or that we're just trying to be difficult and we're not. We're really just struggling with, you know, language and communication so it can lead to frustration on both sides. Then as the disease progresses into middle stages, we may start using more basic words. Sometimes we even invent new words like we can't come up with the word for watch. So we call it our wrist clock. Um, or you might notice that we use repetitive words or phrases when we're speaking more and more often. And then as we struggle to verbally communicate what we want, we start relying more on things like tone of voice, facial expression, body language. Those are the ways we may have to now communicate how we're feeling and what we need. And I find that as we're struggling to verbally communicate and understand others verbal communication to us, not only do we as the person with dementia, use that non-verbal communication more, but that person with dementia also seems to be much more in tune with other people's non-verbal forms of communication.

Connie Gaylor:

That's almost like someone who loses one of their senses. Like they lose their sight. But it seems like they now have amazing hearing.

Dayna Ritchey:

Yeah. Yeah. And of course, they don't have superhuman hearing just because they have become visually impaired. But it does seem that way because the way our body works, we start relying on those remaining senses just to keep ourselves safe and to keep ourselves engaged. But it can seem that way for someone who has dementia, as their words are getting harder and harder for them to use and understand, they just become much more aware of how you, as a family member or caregiver are presenting yourself. Is there stress in your body the way you're standing? Do you look dissatisfied? Do you look frustrated? You know, are your arms crossed in communication of maybe impatience, or are you tapping your toes? They're looking for emotional cues in your body because they don't always understand the words that you're that you're using. So when you're communicating with someone who has dementia, you really have to kind of check your outward appearance as well as, you know what you're saying and how you're saying it. Think about is all of me words and body language communicating that I'm friendly, I'm safe, and I'm patient with you and everything that you're doing.

Connie Gaylor:

Dana, can people actually lose the ability to speak because of their dementia?

Dayna Ritchey:

Yeah, unfortunately they can. And it can happen in any stage. It's something called aphasia. Um, some people may remember before Bruce Willis's family disclosed that he had frontotemporal dementia. They talked about him having aphasia. And what that means is just the loss of our ability to understand or express ourselves in speech. And it's caused by brain damage. So it's not I just can't think of the words. There's actual brain damage that's causing you not to be able to get words out or think of the words. Some people you know don't ever lose their ability to speak altogether. They may still have a voice. My mother, um, still had a voice. But as her disease progressed, you know, she started using more nonsensical words or kind of random words that didn't really fit together in a full sentence. And it can also even impact our ability to write. Um, I haven't found a lot of people that lose their ability to read, per se. They may stop reading because it's hard for them to follow a storyline or remember one paragraph from another. Um, so it can be impacted in some ways. But my my father in law, who had aphasia for the last several years, did not speak. Um, he actually read a couple sentences to me in later stages of his disease from a magazine. There was a big magazine ad that I had open on my lap, and he read it. He read two sentences out of it twice, 2 or 3 times to me. Um, and we hadn't really heard him speak for several years. And then my mom, uh, she could read every sign we passed on the highway. She could read all the credits at the end of the movie. Um, but her regular communication didn't always make a lot of sense. She. She had voice, but the words, again, were kind of nonsensical. Um, for some reason, though, music seems to be different in the majority of people. Um, and it's really because we store things like lyrics to our favorite songs or, you know, songs that meant something to us. Maybe our first wedding dance or something like that. We store those in a different part of the brain. Things that are musically related. And so we tend to hang on to those longer. Um, you can see that there's, um, you know, YouTube videos I've even seen of people who cannot speak due to their aphasia or their dementia, and they'll play, you know, an old hymn, maybe, or a favorite song. And they, they will, uh, get out some of the words or they start, you know, tapping or clapping their hands to the. Beat. So that's a great way to try to connect with somebody who is having a hard time speaking.

Amy Frederick:

Wow. With all these communication issues, it's easy to see why it can be frustrating for both the person with the dementia and their family who's just really trying to help. It's hard to really connect.

Dayna Ritchey:

Yeah it is. And sometimes we start to see what people call, you know, behaviors, um, when we're trying to communicate our feelings. And there are specific dementia related behaviors we'll talk about. But I think for me personally, I kind of forgot that behaviors are just a form of communication. And everyone and all of us, whether we have dementia or not. Um, you know, anybody who's had a teenager, you probably speak to this, right? Like your teen comes home from school, you ask how their day was. They grunt a little stomp down the hall to their room, close the door so there's no actual verbal words there. But that non-verbal communication, you know, probably told you a lot about their day. Um, you know, depending on what you know about your teenager, that could have been just a normal day. Um, or another teenagers. That might have been a really bad day. Um, but they used behaviors. They used that nonverbal communication to to tell you the answer to your question.

Connie Gaylor:

That makes a lot of sense. So what are some common behaviors we see in people who have dementia?

Dayna Ritchey:

Yeah, it can be any type of behavior that we might use when we're trying to communicate emotions. Our most common emotions are things like confusion, depression, apathy, agitation. We might get aggressive. Uh, we can be really resistant, or we can just be totally exhausted. Um, we can also, you know, kind of have a loss of inhibition or lose our filters sometimes on what's appropriate for us to say or do in public. That can be really shocking and mortifying to family members, but unfortunately, that's the disease. That's not your loved one. Um, a person can also be kind of repetitive, so the way they can communicate some of those emotions can be repetition, fidgeting, pacing. Um, unfortunately, people with dementia or any kind of dementia can experience hallucinations which are seeing or hearing things that aren't really there, or they can have delusions very common to have delusions. We kind of touched on this before because delusions are believing things that aren't true. And we were talking about the warning signs I mentioned. You know, people with dementia can be really suspicious of others, even their closest loved ones. That's that's the delusional part, believing that, you know, your spouse could be cheating on you after 50 years or your daughter could be stealing from you. Those are delusions.

Connie Gaylor:

And having hallucinations. Sounds scary to me. Um, and I wonder how I would, you know, how do you respond to a loved one?

Dayna Ritchey:

Yeah, they can sound scary. And they they could be scary to your loved one, too. Um, but this really gets into, you know, trying to join their reality. Um, because they're seeing things you can't see and hearing things you can't hear. And so you've really got to try to focus on the feelings that they're trying to, um, give across in their communication versus the facts. Because the facts are not facts. They're telling you things are there that aren't really there. So that trying to join their reality and come from, you know, more of the emotional side can be really helpful. Um, you know, unfortunately, my mom did have some hallucinations. We noticed notes that she would write Right across like her desk. That said, please do not touch like a bold Sharpie. And she lived alone. Uh, and we were asking her, you know, are people touching your things? And she said, well, there have been some people around here, so just in case. Um, but then I was actually there one day when she was in the middle of a hallucination, and she told me that there were strangers in her house. And, you know, for me, if I put my own emotions on that, when I heard that, you know, she thought there was a stranger in her house, I. I thought if I felt that way, I'd be scared. Um, but I asked her, actually, I didn't really know how to handle it at the time, so I just asked her straight out, you know, are these scary people? Are you afraid of them? And fortunately for me, she said, no, they're just having a big party in the room where my TV is, and I want them gone because it's time to watch my favorite television program. So she was actually frustrated and agitated she wasn't afraid of them at all. And that was good that I figured that out because, you know, talking to someone where the feelings are fear, that's a totally different conversation and approach than someone who's just agitated and frustrated. Um, so the fact that I understood she's mad at people who aren't even there, um, you know, I could just say, okay, well, let me go check out what's going on and let me see if I can get those people to leave. So I went into the room where the TV was. And in her case, you know, it was kind of odd. Her TV was on already. The sound was up full blast. It was dark in there. She had pulled the curtains, there were no lights on, and the ceiling fan was on high like it was going to fall off the ceiling. So I, I mean, it kind of did look like a party had happened in there. Um, but she lived alone and somehow probably did that herself. So, you know, I just turned down the television, turned the sound down. I put it on her favorite station. I turned off the ceiling fan. I turned on the lights. I opened up the curtain. You know, I made it cheery and a place you'd want to go into. And you know, just to make it all the more real. I threw in a few choice words there, kicking those people out of her house. And because, again, in her reality, there's strangers in there. And I wasn't going to argue with her about the fact there's there's nobody in here. Um, so I did all that, and then I went back to her and I said, I got him out of here. And I walked back with her to the TV room, and it was really kind of cool in my situation. It ended up I was kind of the hero for the day, um, at least in that one standpoint, but really trying to understand what they're saying to you, their reality, not arguing with them about what they're telling you they see, and trying to figure out what's the feelings behind what they're seeing. You know, if it's fearful. If her feelings had been fear, we would have probably needed to take a walk out of the house, right? To get her away from something she thought was fearful, and take some time in a more calm manner. And then I wouldn't have brought it back up when we entered the house. You know, hopefully that hallucination would just be gone and we could enter back in and things would be normal.

Amy Frederick:

So. Wow, it's almost like you had to be an actor when you say you were using those choice words. So in addition to being her caregiver, you were also sometimes an actor.

Dayna Ritchey:

Yeah, you kind of I mean, it was very hard. You know, I find it's very hard to be a family caregiver, regardless of your relationship. When it's a spousal relationship, there's a whole different kind of, uh, hardness and emotion for my sister and I, because we were children to the person with dementia, we had a hard time with what we call therapeutic fibs. You know, we can't lie to mom. We both felt like we were six years old all of a sudden. But sometimes in, you know, joining their reality, you know. I couldn't say to mom, like, mom, there's no strangers in here. I just had to play along. And I remember the first time somebody suggested this to my sister and I, we said, oh, no, she's going to know. She's so suspicious. She's going to know that we're lying to her. And the woman said, just try it. If she catches you, just apologize and say you were mistaken. But if she doesn't, that's a good clue as to where she's at in this disease. And so it was it was sad to learn that that's where she was at with the disease. But it was something we learned that helped us make it through then that rest of the journey because, um, you know, we did have to tell her some little white lies, some little therapeutic fibs to assure her, you know, she was okay, or to get her off of a subject that was stressing her out that she was getting stuck on. Um, and sometimes you don't even have to lie. You know, a lot of times we tell people that, and they have just a hard time, you know, figuring out how to fib to somebody, especially if you don't know them all that well. And it can be just providing them reassurance, you know, hey, I hear you. Um, validation or empathizing with their feelings. Gosh, if if I was in this situation, I'd feel fearful too. Um, you know, you don't have to agree with them. Um, but you can still avoid criticizing, correcting, or arguing with them. Sometimes they use an example of, you know, people think a room is on fire and they and that happens every day. Every day they tell you that their room is on fire. So here's a good response to that. Oh my gosh, a room is on fire. Let me go check it out. Because if that room's on fire, I need to call the fire department. So I didn't lie at all. If that room's on fire, you are calling the fire department, right? Yeah, but I'm addressing. Oh, my gosh, I've got to take this seriously. Even though I think there's a 1% chance it's possible. And I've got to take the right action and I've got to let them know, reassure them I'm going to take that action. Um, you know, sometimes also their reality is hard because they might think they're much younger than they are right now, so they may not recognize you for who you are in the relationship. Um, I had kind of a routine every time I would go to my mom once she was in memory care, I would always, you know, stand right at in her eye sight, right in front of her and say, hey, mom, it's your daughter, Dana. How are you today? And, you know, a lot of times I got I know who you are. Um, but it kind of became clear over time. She didn't. And there was one time in particular I remember I could almost see the wheels turning in her brain because she couldn't figure out how she would have a daughter that looked my age. And as we talked more that day, I started to realize she thought she was in her teens or in her 20s because she was talking about. You know, her parents as if she still lived with them. And her sister as if her sister. Still lived with her. So her reality was that, you know, she was a teenager. So how could I be a daughter in my 40s? Right? She she's they're not dumb. She was smart enough to know that's not biologically possible. So, you know, I kind of had to stop dropping the, you know, I'm your daughter part, but I would always tell her my name. Um, and she always, you know, knew. And she saw me. She'd light up. She didn't know always who I was or what my name was, but she knew I was someone that was important to her and that she loved. Um. And so that was. That could be sweet. Um, something we hear a lot, you know, back to the actor idea and joining their reality. Sometimes your loved ones will say, you know, I want to go home. Or maybe they're trying to even wander out of the home in the middle of the night because they got to get home. And we've heard, you know, that from people who are even sitting in homes they've lived in for 50 years. But there's this urgency that they have to get home. Um, we had one sweet husband. He tried everything to convince his wife she was home. He pulled out mail with her name on it, showed her the house number. He showed her the deed to the house. She just wasn't budging. Because a lot of times when we're saying that, we're remembering some home from the past, we're not remembering the home we're sitting in right now. So if that reaction is, hey, I'm going to join their reality, try to validate their feelings, reassure them they're safe. You know, in that situation, was it really important that she understood this was her home? What was important was that she felt safe and she didn't want to leave where she was. So, you know, maybe you just ask the question, you know, oh, gosh. Are you homesick? Um, are you anxious to get back home? You know, well, I can understand being homesick. I mean, we've all been homesick. So we can validate those feelings. We can empathize with those feelings. You'll be shocked. Sometimes. They're very surprised that you understand how they feel. Um, you might have to try a therapeutic fib. You know, some people say, well, we'll go home in a little bit. Um, but you're safe with me here while we're here together. Let's go do something. You know that you both like. Like listening to your favorite music or some kind of favorite activity. But there's even another way to deal with this that doesn't have to be therapeutic. Fibbing. Um, you know, a lot of us need and want attention our whole life. That's what TikTok is all about, in my opinion.

Amy Frederick:

So that's an excellent point.

Dayna Ritchey:

Yeah. So just even showing an interest in this thing that they're fixated in. So you want to go home okay. You know I can understand missing home. Tell me about this home right. You know do you live alone. Does somebody else live in this home with you? What city is this home in? You know, do you have to share a bedroom with someone. Any of those things not only focuses on those feelings of like, gosh, I can understand being homesick, but it really puts into the center of attention this thing. They're fixated and I'm interested in this thing, and I want to hear more about this thing. And it also can help you because in addition to an actor, you can feel like you're a detective as well, because then you're getting some clues, as they're telling you about this home that could give you clues into what era they're in, right? If they're describing a home that they, you know, as their college dorm. Yeah. Then, you know, that's the era they're in. And you can kind of approach them realizing, oh, they think they're in their 20s.

Connie Gaylor:

That's interesting. You know, um, I've heard people talk about. People with Alzheimer's or dementia having sundowning. What is that exactly?

Dayna Ritchey:

Yeah. Um, so sundowning itself is not a specific behavior, so it's not tapping your toes three times and turning in circles. It's actually just a worsening of any kind of behaviors or maybe exhibiting new behaviors later in the day. So late afternoon or evening. And it can be really common specifically for people with Alzheimer's. So as the sun goes down, hence the word sundowning, we see worsening agitation, aggression, stress, those types of things, you know, confusion. Um, so those emotions might lead to behaviors like pacing, wandering, you know, trying to leave your home. Difficulty sleeping? Um, anything, you know, that's indicating increased agitation or frustration. So a couple of things that can help with sundowning. One is really establishing a routine that you're following every single day. You know, when you're eating activities that happen in specific orders, you know, do we brush our teeth and get our clothes on before we eat or after? Um, when do we go to bed? When do we wake up? Like really trying to keep a very specific routine can help a person who has dementia. I think in an earlier session, I mentioned, my sweet mom thought that I stole bananas from her and as I was questioning, do I really need to go get these? Get out of my pajamas and get these bananas, she explained to me. Well, in the morning I come downstairs, I get a cup of coffee, I grab my banana, and I go in the TV room and turn on the news. And I realized this banana is part of the routine. And if she comes down in the morning and there is no banana there, she's not going to know what to do. And my day is going to be so much worse that than just tonight going and get the banana. So it's there in the morning. So that routine, it kind of seems silly, but it's really, really important. You know I was discovering she was even using the television programs to remind her what time to eat. She knew when price was right and it was lunchtime, so that routine was important to her. Um, you know, we don't really know what causes that sundowning part. We do think it could be, uh, the effect of our circadian rhythm interacting with dementia. And so in that case, you know, trying to get out into natural light as much as possible during the day, not just staying inside if the weather's nice can help, um, trying to reduce stimulation as the day as the sun is going down. So a lot less loud noises, bright lights. You know, if you live in a home where children are coming home from school or people are coming home from work, and it gets really, you know, lots of noises and action going on, trying to have your loved one in a in a place of the house that's much more calm while all that's happening, um, can be helpful. Also, you know, like we keep talking about offering them reassurance, you know, that. That everything's fine. Perhaps giving them some redirection into something, you know, that brings them comfort. And then back to the detective, you know, looking for triggers. Are there triggers that are causing these behaviors? You know, are there certain things on television or people that are coming into their home or other persons voices they're hearing that they are agitated by? Or is it is this always happening like right after they eat? You know, maybe it's more of a digestion situation or needing to use the restroom situation. It is important to realize not everybody Sundowns, even though that is pretty common, especially for Alzheimer's type of dementia. My mom had pretty typical Alzheimer's, if that's such a thing, because everybody's so unique, but we never really noticed any kind of sundowning behaviors in her. Um, my father in law, who actually had frontotemporal dementia. He did. Sundown. Um, he had a very specific robotic pacing routine. My father in law was an engineer, so this made sense once we figured it all out. Um, every night at the same time, every night, he had this little pacing routine. He wanted to go in certain rooms, turn on and off lights. He'd go to the bathroom, flushed the toilet. He would go in the kitchen and touch a very specific tile on the kitchen island. And he would just repeat it over and over and over again. And, you know, at first my mother in law probably thought, oh my gosh, this is Sundowning. We got to stop it because people assume sundowning can be bad. Um, it wasn't bad for him. In fact, he got agitated if we tried to stop him. It was kind of this way. He was dealing with his emotions and wearing himself out. So we had to learn to prepare him for his sundowning.

Right? So if this is going to happen every day at 4:

00,

we need to try our very best to have him home at 4:

00, and we need to make sure his gym shoes are on or stable shoes are on versus his stock feet because he's going to be up walking around. Um, we had to make sure things were set the way he expected them. So if somebody had come in and put the mail across the kitchen island and now is covering his tile again, it's it's almost robotic. If he couldn't find that tile to touch, there would be a meltdown, right? So we had to make sure things were the way that he expected them to be. Um, but that really helped with his sundowning. And that was just a coping mechanism for him as the day wore on.

Amy Frederick:

This has been a lot of great information. Dana, are there any other tips that you'd like to provide that could help somebody connect with someone with dementia?

Dayna Ritchey:

You know, the main tips that we talk about are really, you know, things we've covered. So I'll just reiterate them. It's one really, really important you join a person's reality instead of trying to get them into yours. Um, you know, there's two people in this situation. One of us has brain damage. The one with brain damage is not going to be able to change. We have to be the one to change. So joining them where they're at is the most successful. Two, we have to focus on their feelings, not the facts. Remember, the facts may make no sense to you. They they do to them but they don't to you necessarily. So what are the feelings that they're trying to communicate. You want to validate that those are I can understand those feelings. You want to empathize with those feelings so that they know we're not going to have an argument over this. I'm not going to try to talk you out of being afraid. Right. So I'm a safe person. You want to provide that assurance? You know, I hear you, I understand I'm here to help. Uh, again, avoiding criticizing, correcting, arguing. We go into that child rearing Mode when we see somebody saying or doing something wrong. And this is not like that. These people aren't we're not little kids. So we feel offended that, you know, I'm your senior and potentially I know that I'm your elder and you're criticizing me, correcting me. You know, you wouldn't want to spend a lot of time with somebody who's constantly treating you like that. And then I we just had to come to the realization, you know, there's two priorities when it comes to this disease a person's safety and then their happiness. And we just had to start really picking our battles, you know? Yes, mom was wearing sweatpants. And that's not necessarily something she would have done, um, at certain points in her life. But she was safe, you know, she was ever wanting to do something that was unsafe. We had to throw some of these rules out the window and, you know, focus on her safety and other people's safety. But really, then after that, it just became about happiness, you know, on days she woke up and said, oh my gosh, this weekend's Christmas, let's play some Christmas music. We just popped on the Christmas music because that's not a safety issue to play Christmas music. So, um, you know, happiness wins out after after safety, even if it's not the person you're, you're used to. Um, and, you know, the last thing I'd, I'd not be doing my job as the program director to not say, you know, you don't have to struggle with these things we're talking about today on your own. Um, because these can be hard. These can be emotional things for you to come to grips with and someone that you've loved for so long. So this can be, you know, when you're struggling with these things, it can be a really good time to find a dementia caregiver support group. Um, you know, find that emotional support system, get with people who are dealing with the same things or have dealt with the same things and can provide some emotional support, you know, some ideas of how they handled it, maybe the way I handled it with my mom's not going to work. In your situation, that's highly likely. There's all kinds of ways other people have dealt with these situations that might work for you. You can also, every time I want to make sure people know about our 24 over seven helpline, you can always call that for emotional support or to find a support group near you. That number is 802 seven 2900. Also, to find support groups near you, we have a, um, a website we've partnered with AARP to build. So it's called Community Resource Finder. All one word there. Community Resource finder.org. So you can go on there and search for support groups based on your zip code. And then here in the Cincinnati area we have several support groups that meet virtually. So if you cannot leave your home to attend a support group. You can join us on zoom. We have people from even outside our state that join us on zoom and our support groups. So you can always ask at the 800 number to find a virtual support group. And then lastly, the National. Our national chapter has a great online support resource on our internet site. Our website and it's called All's Connected. So a connected Dot. And that's an online support group, um, that only meets, you know, basically through kind of like old fashioned chat. Yeah. Yeah.

Connie Gaylor:

Well, again, this has been just such a great podcast and we thank you for spending your, your time with us here. Um, for our listeners, join us for the next podcast in our Alzheimer's series focused on building the foundations of caregiving, which is a topic relevant to all caregivers of adults, not just those caring for someone with Alzheimer's or another dementia.