Navigating Dementia, Without the Burnout: How understanding why behaviors happen helps you respond effectively with Amy House - Episode 239

In this deeply insightful episode of the Caregiver Relief Podcast, Diane sits down with Amy House—Certified Dementia Practitioner, Licensed Assisted Living Director, and host of the Think Dementia podcast. Together, they break down the physical changes in the brain, why "problem behaviors" are actually involuntary reactions, and how changing your approach can completely transform your daily routine 🌟

📌 Episode Highlights & Outline

• Intro: Welcome & why love alone isn't enough when navigating a disease of the brain, not the heart 💔➡️🧠.
• A Tour of the Dementia Brain 🗺️:
  • How losing up to two-thirds of brain tissue impacts reasoning, judgment, and the "social filter" 🚫💬.
  • Why language comprehension fades while visual and non-verbal cues take over 👁️✋.
• Why Long-Ago Memories (and Swear Words!) Persist 🎶🤬: The surprising parts of the brain that remain intact—including rhythm, old memories, and expletives!
• Behaviors Are Unmet Needs 🕵️‍♂️: Unpacking "I want to go home," wandering, and why overlooked physical pain is often the hidden culprit behind agitation 😣💊.
• What NOT to Do When Agitation Hits ⚠️: Why logic, arguing, and telling someone to "calm down" backfires—and how matching their emotions & validating their feelings works instead 🤝❤️.
• Making Travel Friendly ✈️🌻: Amy shares her groundbreaking work training airport and TSA staff, plus how the Hidden Sunflower Lanyard helps caregivers travel with dignity 🎟️🧳.
• The Ultimate Advice for Overwhelmed Caregivers 🌈: A simple mental shift to reduce stress starting today, plus practical caregiving hacks (like singing during routine tasks!) 🎤🧼

🔥 Key Takeaways You Can Try Today

1. Be on Their Side, Not in Opposition 🛡️: When someone living with dementia is upset or mistaken, drop the logic. Say "I'm so sorry" or match their concern to show you are on their team.
2. Watch Your "Concentrating Face" 🤨➡️😊: People with dementia rely heavily on body language. Try humming, whistling, or singing during daily care to keep the energy light and reassuring 🎶.
3. Investigate the "Why" 🔎: Before reacting to challenging behavior, ask yourself: Are they cold? Thirsty? In pain? Do they need the bathroom? 🚽💧

💬 Connect & Learn More

• 🌐 Amy House's Website: think-dementia.com
• 📺 Caregiver Relief YouTube: YouTube Channel
• 📘 Caregiver Relief Facebook: Facebook Page

👉 Hit Play Above to Listen to the Full Episode! 🎙️✨

If this episode encourages you, please take a moment to like, comment, or share it with another caregiver who needs hope today! 💜

Podcast Episode Transcript

Diane: Welcome to the Caregiver Relief podcast. I'm your host, Diane Carbo, RN. If you've ever cared for someone with dementia, you know how quickly things can change, how confusing and exhausting it can feel when behaviors don't make sense.

One moment everything is calm, and the next you're dealing with anger, repetition, or withdrawal, and wondering what you did wrong. What if the problem isn't what you're doing, but what you don't yet understand about the brain? Today, I'm joined by Amy House, certified dementia practitioner, licensed assisted living director, and host of the Think Dementia podcast.

Amy has helped thousands of caregivers better understand dementia and how to respond in ways that reduce stress, improve connection, and create better days for everyone involved.

Diane: Amy, I'm so thankful you're here with us today. I know you are very busy, and it was really hard to get you. can you start by explaining what you mean by Think Dementia?

Amy: Sure, yeah. Thank you for having me, Diane. It's lovely to be here. You know, I've been a professional public speaker doing a lot of dementia education for so many years, and when I decided to start a podcast and really make this dementia education part of my business, I was thinking about how I've been to so many places where at the end, caregivers come up with so many follow-up questions.

They're all asking me about this scenario and that scenario, and what should I do about this? And every time they do, I think, "Oh, that is a excellent question. I wish I could add that to this presentation." We'd be here 80 hours if I added all these questions.

Diane: Yep.

Amy: And because... It's not the only question that you have, somebody else has that question, too.

Maybe they just don't know it yet.

Diane: Yes, yes.

Amy: And as I was, working on a title for my podcast and kind of my mission, I was really thinking about how much love goes into caregiving, and that if love was just enough, oh, caregiving would be a breeze, right? If we just loved the person enough, that would be easy.

Diane: Yeah. exactly.

Amy: And it just, it came out to me as, but, you know, this is a disease of the brain, not of the heart.

Diane: Yeah.

Amy: And then it just occurred to me, you really have to think about what's going on in the brain, and then you can understand why the person is doing the things that they're doing or acting the way that they're acting, and realize how little control they have over it and, what they're experiencing.

And so that's how I came up with Think Dementia, that you have to think dementia in order to understand what's going on in the brain. And if you do that, you can just separate some of the, what comes with this disease process and some of the heartache that comes with it, 'cause it's not a disease of the heart.

Let's talk about the brain instead.

Diane: It's hard for family caregivers because the person they're looking at looks the same, but they're no longer who they were, and it is really hard. So tell me, what is actually happening in the brain when someone has dementia, and how does that affect behavior?

Amy: Yeah. Well, there are a lot of... I'll just do a quick tour of the brain for you.

Yeah.

Diane: Thank you. Yeah.

Amy: Yeah, this was taught to me by my mentor, Teepa Snow, who I've been a Positive Approach to Care trainer with her now for, I think about 12, 13 years.

And, so when you think about, first of all, the frontal part of the brain, the frontal lobe, that is where somebody has their reasoning and their judgment.

And when it comes to anything going on with how they're behaving- that's a, you know, that's a term that people understand, behavioral symptoms, but really, it's more about how they're reacting to things.

Diane: Yes.

Amy: And when you have a good frontal lobe, you're able to think about and rationalize what's happening.

You're able to think about the options that you have and what would be the best route to go, and you're also able to choose that route, and then see if it works. And if it doesn't, maybe you learn from it, and then you go a different route.

Diane: Yes.

Amy: But when somebody has dementia and that part of the brain is damaged, because the brain cells are shrinking and dying, a person will lose two thirds of their original brain size by the end of the disease. So when they have that damage to the brain in the frontal lobe, that reasoning and judgment is gone, and you end up with just a lot of emotional responses to things, because they can't even express sometimes what it is that they want or what it is that's upsetting them.

Because they can't process it. The brain just can't process it.

Diane: Yeah.

Amy: That's also where we have our filter. And so the things that come out of somebody's mouth sometimes can be either embarrassing when you're in situations, and they say something to the person in the grocery store line that's offensive, or it may just be, too, that they are really telling you how they feel, where normally they would have filtered a bit of what they're saying to you as their loved one or as a person that they're working with professionally.

There's a lot we keep to ourselves, and, that's what's going on in the frontal lobe, just a little, a portion of it. And then the executive function is there, too, so that just is the ability to figure out and plan what you're doing from point A to point B to point C. Then if you look at the temporal lobes, on one side, we have language, and so that not only affects how the person speaks, you might have somebody with a bit of aphasia, where they can't produce speech or they can't find words, but also it's how we comprehend speech.

Diane: Yeah.

Amy: And I think a lot of people forget that, and, sometimes I will hear somebody talking about maybe a caregiver that they have professionally working with their loved one, and they'll say, "They have a hard time with their accent. They can't understand them," or, "They're not talking enough. They're just so quiet.

I just don't think this is working." And the person living with dementia, because of the damage to that part of their brain, they are really looking instead at the visual cues and the non-verbal language that you're giving them.

Diane: Yep.

Amy: So I say that doesn't matter 'cause even though I'm, speaking English in a way that they understand, they're might, they might be only getting about two out of every four words I'm saying to them.

Diane: Yeah.

Amy: So it's like they hear those other words, but they're in another language. So regardless of who's working with the person, even what language they speak, a lot of it is just not based on language because of the comprehension issues they're having. And then over there is also your short-term memory, and your working memory, and your ability to remember recent events.

And that becomes a big source of anxiety, especially in the early stages. Someone living with dementia who's very aware of things, like they have appointments coming up, they have so much going on, they want to keep track of that, but they just can't. There's a wonderful visual that I show caregivers, and it has a hole at the end of the disease, right where their short-term memory should be.

Diane: Yeah.

Amy: And so you tell them something, and it's like, bloop, it just goes right through there. So what can seem as, them maybe bothering someone over and over again and, that anxiety coming up again, is out of their control. They just can't hold on to the information. and then on the other side of the brain, we have wonderful things that still work well, like music and rhythm.

That's a part of the brain that's not affected. So anything with music or rhythm, like prayer, or poetry that they know, or just little nursery rhymes that we used to know, those are not affected and can still be used to communicate well and enjoy. but there's also over there their long ago memories, so that's why somebody may be able to tell you all about their childhood, but they can't tell you anything about yesterday.

Diane: Yeah.

Amy: 'cause, you know, in addition to that, we store our long-term memories in so many different places in our brain. Because it's not just the thought of it, it is also the smell of it, what we saw visually, what we heard, the emotions that were attached to that long ago memory. So the amount of connections in the brain for long ago memories is so much that it can withstand this disease.

People can still remember a lot, even up till the end. Over on that side of the brain, one more fun thing that can come up during behavioral symptoms are a great little vocabulary place where we keep our expletives.

Diane: Oh, yes.

Amy: So that's all the naughty words that we learn in our life. as Teepa explained it, and I talk about all the time, when you're little, you learn a swear word and you say it to an adult, and they say, "Oh, no, no, no, we do not say that word."

Diane: Yep.

Amy: "We do not use that word in this household." And you learn, okay, well, I'm not supposed to use that word, so I'm not gonna put it over with my vocabulary and comprehension. But I don't wanna forget it and accidentally say it, so I'm gonna put it in a special place.

And basically, even if it's a word you would never say out loud.

Diane: Yeah.

Amy: Even if it's an incredibly offensive term, like a, a racial slur or sexual words. If they're... Even if it's that offensive, you would never say it out loud, you still know them because you know not to say them.

Diane: Yeah.

And so they, we keep them all over in a special part of the brain, and that can come out when somebody's feeling frustrated or they don't know how to describe something.

I used to have a gentleman that I worked with who was saying really sexual things to the resident assistants when they were caring for him. And what we discovered was he wanted to compliment us. He wanted to compliment us, but he couldn't find the words for that.

Diane: Yeah.

Amy: So it came out as pretty

His wife was just appalled. She was like, I don't even know how he knows those words." we all know those words. And so what we did, we started beating him to the punchline then. We would walk in and we'd be like, "Hey, how are you doing today? Do you like my dress? Do you like, do you think I look nice today?"

And he'd be like, "Yeah, yeah." And then it would be over.

Diane: Yeah.

Amy: It had his time to compliment us, so then the sex talk didn't come out. so again, not his fault, not him trying to be, offensive. it was just him trying to compliment us, but everybody saw it as a behavioral symptom that was coming out.

Diane: Yeah.

Amy: And then, the muscles and the nerves and the vision is also really affected in all the other parts of the brain.

Diane: Yeah.

Amy: They maybe don't impact the behavioral symptoms as much as some of those more, executive function parts of the brain that we have. But it is something that many people don't realize, that they are going to feel things differently through their nerves, they're going to taste things differently.

They're going to have different vision and not be able to see well. There's so much going on in the brain that can be the cause of, different behavioral symptoms, like bathroom cares. Sometimes people really struggle with sitting in the bathroom. Yeah. "

I can't get my mom to sit on the toilet. It just starts off so negative 'cause I just can't get her to sit down."

Diane: Yeah.

Amy: Well, you might be approaching that toilet in a, where it's not even in her vision. And so now you're just asking her to sit down on the floor. You're trying to push her down on the floor, and she's gonna resist that. So there... I just, I really do love thinking about what's going on in the brain to figure out why somebody is doing something that they're doing and how we can adjust with the healthy brain that we have.

Diane: I have, worked with head injury survivors, people with dementia and stroke for decades. And when you were talking about the swear words, I had a little lady ... No, she wasn't old. She was in her 40s, was a pastor's wife, and she had a head injury with frontal lobe involvement. And, the only word she could say was the F bomb.

Amy: Oh.

Diane: And she went around saying that all day long, and I felt so bad because the church members would come and visit her and be shocked and appalled. And instead of being understanding, they were judgmental and they stopped coming. So many of them just stopped coming. And, meanwhile, I'm thinking every time she wanted to say the word and didn't, it was coming out.

Amy: Yeah.

Diane: So yeah. and sexually inappropriate behavior is very real, and it makes a lot of caregivers uncomfortable. If they're providing the care and their father or their husband's getting touchy feely or speaking graphically, it's very uncomfortable. But when you see that you c- that you can't take the behavior personally.

Amy: Yes.

Diane: And can you explain, Amy, why dementia behaviors are not intentional?

Amy: Yeah. They're not intentional because they're really a reaction to a situation or to a feeling. for example, there's a lot of, possibility where somebody is feeling alone and scared, and so they wanna go home.

Diane: Yeah.

Amy: I want to go home. I don't recognize my surroundings," first of all.

Diane: Yeah.

Amy: And if we don't recognize where we are, the first place we wanna be is home.

Diane: Yep.

Amy: And it may be that visually they're looking around and realizing they want to go home, and then they're connecting that home to the area of the brain that keeps those long ago memories, 'cause that's what they still have.

Diane: Yeah.

Amy: They can't connect it to the short-term memories of the last maybe 20, 30 years where they lived.

Diane: Yeah.

Amy: And they're thinking more back to the first place they had with their spouse or their parents' home.

Diane: Yeah.

Amy: And sometimes people take that very offensively, because they're, like, they've created this atmosphere for this person to live with them, or to live at this memory care, and they've put so much care and love into it, and the person just wants to leave and go somewhere else.

Diane: Yeah.

Amy: But again, it's not, something that they can control. It's just a natural feeling that we have.

Diane: Yeah.

Amy: "I don't know where I'm at. I wanna go home." So sometimes just validating their feelings can be what works with that, "Oh, I miss my home, too. I wish I was there right now. What is the best thing about being at home?" asking a question like that and agreeing with them, and saying, what, where did you grow up?" And just starting that conversation. or bringing some comforts of home to them, because sometimes when somebody's looking for home, it's actually that they're looking for a place where they would get their needs met.

Diane: Yes. Yes.

Amy: I had a woman who was wandering through the hallways, and when I found her, she was looking for her parents, and she was telling me her parents' names, and they have a farm, and

Diane: Yeah

Amy: I know her mom's name was Clara. And, all of that was because when we got finally back to talking about how she was doing after we talked a little bit about her family, she was really thirsty.

So that's what started the wandering. The thirst

Diane: Yeah

Amy: is what got her moving and looking for her parents, because they would help her find something like that.

Diane: Yeah.

Amy: So yeah, it's not necessarily something that they are doing on purpose when they are wanting to go there or see somebody that may be deceased.

It's something that is just natural, because you're looking for somebody to help you.

Diane: Yeah. Well, there are times when the person is home, and they're still seeking to be home. And that's where you brought up a good point, that maybe they're looking for something of comfort or they have an unmet need.

And while they're saying they want to be home, and they are home, it's very frustrating for caregivers. But you, if you can drill down to, to see what's actually happening, you'll learn, and that's where your approach comes in. So

Amy: Yeah

Diane: 'cause it, it explains what's really driving them. And if you can get caregivers to, pay attention to those types of think dementia, like you say, and, it makes it easier for them to understand what they need to do and how they need to approach it,

Amy: Absolutely. And I'll give you a handout for the, the show notes,

Diane: Oh, great.

Amy: Yeah, because it kind of goes through some things to try, to think about. What could this be, something that's more of a feeling and

Diane: Yeah

Amy: comfort needed, or is this a unmet need?

Diane: Yes.

Amy: one unmet need that is, particularly a very, special place for me that I'm always looking at, 'cause I don't think people treat it enough, is pain.

You know, many times if somebody is 80 years old, 90 years old, even younger people, they may have had, sciatica problems their adult life.

Diane: Yeah.

Amy: And now, they're sitted in, sitting in a recliner for hours each day

Diane: Yeah

Amy: and yelling out and moaning, and unable to express it. But, you have to look at the history then and say, "Well, have they ever had any injuries?

Did they ever have pain in their life?" Oh, yeah, they had sciatica problems. let's look at that then. Yeah. And let's figure out maybe it's moving more. Maybe it's a hot pad. Maybe it's some medication. Yeah ... yeah, it just, pain is so overlooked, because even the person with dementia doesn't understand their pain.

And if you ask them

Diane: Yeah

Amy: they're gonna say, "No, I'm fine."

Diane: Yeah.

Amy: They don't know.

Diane: I live with chronic pain and, my years of nursing, I tease, I used to pick up men for a living and because inev- inevitably I did,

Amy: I'm gonna use that one.

Diane: Yeah. So you know, my neck, my back, I have sciatica.

You know, I have all kinds of issues, and, movement is the best thing, but one of the things we tend to do in, memory care or in a nursing home is keep a person down, it, because it's easier for us to provide care. And you're very spot on about, we do not think about pain and, that should be the first thing.

Do they need to go potty or or toilet, do we need to toilet them, or do, are they hurting? And it's very real as you get older, 'cause I'm 73, that it could be something as simple as, changing them, walking with them. But you have to think about those things, and I think they're the last things that most people consider when they should be the first.

Amy: Yeah. Yeah. I do, memory care consulting as well as part of Think Dementia, and, they brought me into this one memory care because this one gentleman is like, they couldn't get him to the bathroom.

Diane: Yeah.

Amy: And what... You know, they would get him in his apartment, and they'd get him to the bedroom, but then you had to go through the closet to get to the bathroom.

And Looking from his point of view

Diane: Yes

Amy: why would I go into the closet? And

Diane: Well, you know what I think, 'cause I've seen it, they'll go into the closet and pee.

Amy: Oh, yeah. Yes, exactly.

Diane: I'm sorry, but let's talk about reality. Yeah.

Amy: But this, this particular gentleman, when they wanted to get him to shower, use the bathroom, whatever, from his point of view I could tell, first of all, he's limping.

He is limping.

Diane: Yeah. God bless him.

Amy: He is having pain. if you're limping you're definitely having pain, even if he says no. Even if he says "No, I'm fine. I'm okay"

Diane: Yeah

Amy: he's having pain. And so I'm like, from his perspective, I have made it all the way with you to the bedroom.

And now you want me to go in the closet?

I'm not taking another step. I'm in pain. Yes. Yeah. why would I go that way

Diane: Yeah

Amy: to a closet? That makes no sense. And you couldn't see the toilet

Diane: Yeah

Amy: from where he was standing. You couldn't see any kind of indication that's the bathroom.

Diane: Yeah.

Amy: So we talked about some visuals to help him with that.

We also talked about, you know, when it's time for using the toilet, just scoop him up in a wheelchair and take him there. Yeah. 'Cause he was fine with that. He wasn't objecting to being pushed in a wheelchair.

Diane: Yeah.

Amy: So it, because I said it just doesn't make sense. You have to think dementia, you have to think about what he's seeing.

Diane: Who set that floor plan up? What's going on. It makes no sense, Oh my, yeah. But I don't even want to get into that kind of stuff because

Amy: Oh

Diane: these people are paid big bucks to create these environments, and they fail us. I mean, walk

Amy: Yeah

through a closet, especially with somebody who's already confused and

Amy: Yep

Diane: oh, God bless us. Yeah.

Amy: I will say right now, yeah, those that design

Diane: Yeah

Amy: buildings, they're beautiful, but none of them are usually thinking dementia.

Diane: Oh.

Amy: And yes, if anybody wants

Diane: absolutely

Amy: consulting from me for that too

Diane: Yeah

Amy: I would love to come and talk with your designer and help to make it a beautiful but a supportive environment.

Diane: It 100%. one of the things I did, marketing and sales, and one of the buildings I would go in, a chain, all had, all looked alike. They looked like, Gone With the Wind with the big staircases. And it was for assisted living and memory care. And I'm thinking, "Who in their right mind creates a staircase with

Amy: Yeah

Diane: with millions of steps for an aging body?"

Amy: Yep.

Diane: That made no sense at all, and what a wasted space that could've been done with something absolutely beautiful or important

Amy: Yes

Diane: that made sense. But, you know, it's just, the people that design sometimes, need somebody like you that can absolutely step into the role and say, "This makes sense.

What you're saying is, does not make sense." I get that,

Amy: Yep.

Diane: Now, Amy, when a loved one becomes agitated or upset, what is the wrong way to respond, and what works better?

Amy: Well We do not want to point out that they are wrong

Diane: Yeah

Amy: in any way, okay? Yeah. We don't want to say, "Calm down. Why are you acting like this?"

This isn't like you, Mom, or whatever it is. We don't want to start

Diane: Yeah

Amy: accusing them of feeling wrong. That's not going to work.

Diane: Yep.

Amy: Instead, we want to match their concern. If they are upset about something, we may want to also look like we're just with them on this. I am with you, and I am just as frustrated as you are.

We better figure this out. I had a woman in the memory care who when she got mad, I could hear it way down the hall. It wasn't

Diane: Oh, yes

Amy: it was the loudest yell you've ever heard when she got mad at somebody. Yeah. And when I came in there, she was going around the dining room with her walker just ready to ram down anybody.

She was so mad. Oh. And the first thing I did was I went over there, and I was concerned, okay? Everybody else was like, "No, stop, no, stop," you know?

Diane: Yeah.

Amy: And instead, I went over and I was concerned, and I said, "Oh, my, oh, my goodness, what, what is happening here?" And she was telling me, but she had word salad, so she was just

Diane: Yep

throwing words out and just very angry. And I said, "This is ridiculous. come with me. Let's go figure this out." And she came right with me to my office, where I had chocolate waiting.

Diane: Oh.

Amy: We'll sit down and be fine. And then the thing was over. Yeah. Because I was just as upset as she was in that moment with just

Diane: And you were able to redirect her

Amy: Yeah

Diane: to get her mind off of what she was, that feeling at the time. I think that this is a, a place that I'd like to tell my listeners, those with dementia will read your sense of feel, your feelings and how, what you're doing. So if you're stressed and angry and upset, they'll be stressed and anxious and upset as well.

So sometimes, responding, like, "Oh, I get it, I understand," they have, they're validated.

Amy: Yes.

Diane: They still have the ability to feel like, "Oh, somebody understands me." And then while you're listening to her with her word salad, you're letting her express herself, and then sitting her down in a quiet, comfortable office and offering her chocolate is a good thing because now she feels like, "Oh," much more calmer.

And I love that approach. In fact, you don't have to bribe me with chocolate.

Amy: Yes. Now, the interesting thing, though, is if I would've gone up to her with a piece of chocolate while she was-

Diane: Oh, yes

Amy: rushing around ramming with her walker

Diane: Yep

Amy: she wouldn't have ... If I would've said, "Oh, my, here's some chocolate"

Diane: Yeah

Amy: not going

Diane: to. Yep, she would've slapped it out of your hand, I'm sure. Yep, exactly. I've seen it. I've seen it.

Amy: I had to you know, I came from the side so I wouldn't be looking confrontational.

Diane: Yeah.

Amy: But I had to get in her field of vision so she could see me.

Diane: Yes.

Amy: with me looking very concerned.

Diane: Yes.

Amy: Like, oh my goodness, what happened? That I'm on your side, and that is the biggest thing. Somebody

Diane: Yes

Amy: always on my side. That's how they need to feel.

Diane: Yes.

Amy: what I'm saying or what I'm doing, if you're on my side, we're gonna start this off correctly. If you come in and argue with me or correct me or try to stop me, we're starting this off as an opposition, and we don't wanna do that.

Diane: Yes, yes. How can caregivers communicate effectively when logic and reasoning are no longer work?

Amy: Yes. Well, first of all, you have to go with the flow, okay? You have to throw that logic and reasoning out the door. Trying to explain things to someone

Diane: Yep

Amy: who, one, like I said, their brain may not be comprehending all the words you're saying.

Diane: Yeah.

Amy: two, they may be not remembering any of the things you're talking about, that you might be referring to something or a person or anything, and they just, they're living somewhere else in a different time. They're living right now in this moment, or they're living in the past. You never know. And so when you're trying to explain and use logic, you're again starting off with an opposition.

I am not on your side.

Diane: Yeah.

Amy: We are having a debate here, right?

Diane: yes.

Amy: You're putting yourself opposite of them. You're not saying, "I'm with you, and I agree with you." And so using logic and trying to explain things, it doesn't always work.

Diane: Yeah

Amy: Everybody is so unique. There are people who can be, very well, you might have some logical explanations for things that those phrases or words resonate with them.

Diane: Yeah

Amy: It may be that it works, it might be something that's logical, like saying, "Well, we already paid for the haircut, and now you don't want to go?" And that might actually make sense to them, and they'll go, "Oh, we paid for it, we better go." Sometimes you can do that. But if it's really like they're trying to say, "I need to go home," or, "I need to find my husband"

Diane: Yes

Amy: or, "That person was mean to me," Yep. Whatever it is, or, "You were mean to me," you have to agree with it. Starting off by trying to explain things doesn't work. I had a, a situation in the memory care. I was a director of memory care for six years, and I keep up my license in assisted living 'cause I, I help with, like I said, consulting and, and their memory cares.

But there was a situation where one of the resident assistants, the resident with Lewy body dementia thought that he called him a name. And they, he, they... So he came running up. He's like, "You can't call me that. You can't say that to me." And you know, as a person whose job is to always be your kindest to these residents, I'm sure that they were thinking, "I'm not going to admit that I said that to you, because I would get in trouble as a resident assistant.

I don't want to lose my job."

Diane: Yep, yep, yep.

Amy: So their first instinct was, "I didn't say that. No, I didn't say that. I would never." And they were trying to have logic and reasoning and explain.

Diane: yeah.

Amy: And I came over, and I was of course concerned. And then I got right up to the resident assistant, and I just said, "Who here has the healthy brain?"

And he, his head just dropped and shook his head, and then I said, "Just say you're sorry." And he's like, "I'm so sorry," to the resident.

Diane: Yeah.

Amy: And then the resident was okay and able to accept that and, and Yeah ... came with me. Yeah. But yeah, when you try to correct and, or say, "I didn't do that, I didn't say that," or, "I didn't steal that"

It doesn't work. You have to instead just be on their side, and I'm sorry goes a long way. If you do start off on the wrong foot, I'm sorry is the best thing to say.

Diane: Be sincere when you say it, because they'll pick up if it's not authentic. Oh, yeah. I will tell you that right now.

Amy: Yeah. Yeah. The non-verbals, they pick up on all the non-verbals.

Diane: Yes, yes,

Amy: Yeah. So if you're nervous about something, or if you're, you know, just don't have any patience today, and you're huffin' and puffin' and just, not awake yet, or whatever it is that you're doing that might seem unpleasant, they're going to pick it up, and you may not realize what you're reflecting.

Sometimes it can help to record yourself or practice things in the mirror.

Give yourself an idea of what do I look like when I'm providing cares. I work with a family through the GUIDE program, I'm a care navigator through GUIDE with Tembo Health, and, this one gentleman takes great care of his wife, but she kept saying things to him like, "Why are you doing this?

I don't think you like doing this. I don't think you want to help me." And he was just always explaining to her, "No, I do want to help you. you know, you're my wife." "I love you." And I said, sometimes you gotta think about what your resting face might be when you're-"

Diane: Yep

Amy: providing the care.

Diane: Yep.

Amy: And you're concentrating, right? You're concentrating on how to get this, these pair of Depends on, or tie these shoes. You're concentrating, and your concentrating face might not look very happy.

Diane: Yeah.

Amy: And I actually encouraged him to start singing while he was doing cares with her. Because she loved to sing.

He knew the songs, too. I said, "If you're singing or whistling or humming, you're gonna seem like you're having a good time, no matter what you're doing."

Diane: Yes.

Amy: And that could be helpful, just for her to hear that, that he's enjoying this with me.

Diane: Yeah. I love that

Amy: they're looking at your non-verbals.

So you got to really try to think about that and maybe look at what it looks like when you're doing cares.

Diane: Absolutely. And, you just have to become flexible, when you approach things, 'cause it's really, it's challenging and it is, even if you're tired and you're worn out, I love that.

You sing, you and actually it helps both of you. You're lift- you're uplifting both of your spirits at the same time.

Amy: Yeah.

Diane: And that makes a whole different, I always tell everybody, my, my listeners, to change your perspective, you change your life. And if you can just change your perspective when providing care and make it about music or make it about something that's good that will make you feel better, it will also come across to your loved one.

Amy: Yeah. Yeah.

Diane: Now, Amy, you do something that's very different from anybody else in the country, I think. I'm, you actually teach airport staff how to interact with those with dementia.

Amy: Yes. Yeah. And

Diane: I am, I want to have you share your, that s- you, with my listeners because it's, I fly. I used to fly a lot.

I don't fly so much anymore, but, I am seeing wheelchairs everywhere, more wheelchairs than walking people at times, and a lot of these people are elderly and have the beginnings of dementia or maybe in the middle stages of dementia. So tell me how, what, in fact, how did you get started doing that and, what can, what do you teach them about?

Amy: Yeah. Well, I am a, a founding member of a group called the Roseville Alzheimer's and Dementia Community Action Team. That's where it all started- ... where the city of Roseville, Minnesota supported a grant of Act on Alzheimer's to put together some volunteers, and the city of Roseville provides us with a website for anybody to use, not just their residents, on Alzheimer's and dementia. We were doing that for about, maybe nine years, I wanna say, or eight years. And then the leader of our group, Sarah Barcel, she's a elder advocate that lives here, she started getting a lot of emails about travel, and just how it's a struggle.

Diane: Yeah.

Amy: So that then became a spinoff group called DFOG, if you're cool, which stands for Dementia Friendly Airports Working Group.

And again, we're not an organization. We don't have a bank account. We are just people who get together. a wonderful person at the University of Minnesota, a student there, she was working, I believe, on her doctorate, and her name is Colleen Peterson. She did a survey with us, and we worked on surveying the issues that happen at airports.

We worked with, the, somebody over in, Brisbane, Australia, who had worked to make their airport dementia-friendly, and looking at just all of the needs that are there. Because

Diane: Yeah

Amy: the bottom line is, if something's dementia-friendly, it's every person friendly.

Diane: Yes.

Amy: Yeah. You know? It is. It's going to help us all feel more relaxed.

It's gonna help us all find our way. It's gonna just make things easier. we started this, and, part of that then became doing, training for airports. And so I've done a few trainings here at MSP, Minneapolis-Saint Paul Airport, with a variety of staff. You know, TSA people, the volunteers that help those go through the airport, the different leadership, and all sorts of different programs that are there.

And we talk about, not diagnosing somebody when they're coming

Diane: Yeah

Amy: through the airport. You can't do that. But actually just taking a moment and pausing when something out of the ordinary happens, and say, this could be dementia." Yeah. "And how could I approach that?" Yes. "How can I be on their side?

How can I agree with them?" "How can I provide extra support and help?" And one of the, programs that we work with is called the Sunflower Lanyard Program. it's called the Hidden Sunflower. The hidden sunflower means that you wear this lanyard, and it just identifies you as somebody with a hidden disability.

And all the, all it means when you see one is this person just might need more time and patience. it doesn't mean you have to have any real special skills. You don't have to know how to, work with anxiety if that's their hidden disability. But it just means let's give them more time and patience, and take a deep breath before we try to address a situation, and just be more supportive.

So yeah, a lot of that is, validation with the airport people. That's kind of the fun thing to do in the trainings. Deb Nygaard, a colleague of mine, we love to do little skits. one of us will be the person with dementia, and the other will be the person who's coming along. and, they just love it when I take the side of somebody when I come along and I say, "What is going on here?"

And they'll say, "They lost my luggage." And I'll say, "Oh, I can't believe you did that. I'm gonna talk to your supervisor. Let's go" "figure this out." Right? I'm agreeing with them, and so you have to be okay with hearing that sometimes.

Diane: Yeah.

Amy: but yeah, it's about... We have a website, dementiafriendlyairports.com.

Diane: Okay.

Amy: Traveling galore. Everything you might need to prepare for travel. Everything that's your right. One of the big things that, this group did was pass a law that means that you cannot separate a caregiver and their, person they're caring for while going through TSA. You cannot separate them anymore.

Diane: Yeah. '

Amy: Cause that, that's really hard. If all of a sudden somebody goes through first, and then now something happens and they're on the other side, and you're that's just a disaster waiting to happen. So yeah, so there's just been all these wonderful things that have come together.

There's a whole bunch of airports that are participating in our meetings, and learning how to be more dementia friendly or starting their own programs up. and yeah, it's a really cool group to be part of and a cool movement to be part of.

Diane: I love that. I have, I'm an RN, and I have transported patients, head injuries, strokes, those with dementia.

I've transported them via air- the flying to either to be closer to home because they were far away. And I can tell you the obstacles that I have had to, that were challenging, were very hard for someone because the staff, like you said, just at TSA, to be separated, Of course, I'm aggressive enough and and go, you know, "Nope, nope, nope, that ain't happening," "I'm sorry."

Yeah. "This is my patient. I can't be, separated from them." But yeah, it's very challenging. And, another thing I would like you to hope in the future, that you would also help train the airline flight attendants.

Amy: Yeah. Yes. We really want to expand to doing that.

Diane: Yes. Yeah.

Amy: the wonderful things that came out of MSP is their education department there took our training and they put it into an online format so that anybody can do that anybody.

Diane: Oh, that's wonderful

Amy: Yeah, and to just do that out of the kindness of their hearts,

Diane: Yeah

Amy: it's really a great thing that MSP did. So

Diane: Well, it provides better customer service. It provides consistency of service. it does so many things if people and I, having worked with strokes and head injuries for decades as well, many of those, and I love the, sunflower lanyard.

Amy: Sunflower.

Diane: Yes. I love that because that, doesn't say it's dementia, doesn't say, you know, it's a head injury, doesn't say, but it says that they have a hidden disability, and I really like that because I also had a son who had a, a severe pain condition. And people are cruel because they can't see, what's this guy doing in a wheelchair?

And, and another thing I always... So I think having the lanyard i- is important for a lot of people in different conditions.

Amy: Yeah, I've experienced that. I've experienced that myself. I have a foot condition and if I stand for long periods of time, it's like there's a timer on my foot.

So depending on

Diane: Yeah

Amy: the size of the airport, depending on how long the wait line is to get through security

Diane: Yep

Amy: I could decide if I'm going to need a wheelchair to get through that. Or sometimes I'm able to do it.

Diane: Yeah.

Amy: But yes, I do feel like I get a lot of looks, and I'm just very self-conscious about it probably, but I do feel like I get a lot of looks when I'm in that wheelchair and I'm so young.

Diane: Yeah.

Amy: but yeah, having the Sunflower lanyard-

Diane: Well

Amy: is something I can wear too.

Diane: One of the biggest complaints at the airport is people using the wheelchairs, so many wheelchairs, but I have chronic pain, and one of the things is, I have not been able to stand in line for anything. So, I got a wheelchair for decades.

I recently had a procedure about two or three years ago which allows me to have less pain so that I don't have to have a wheelchair each time. But one of the things that I'm hearing when they're saying it's about seniors using wheelchairs, that I can get up and walk once I'm there, and people find that offensive.

And I'm like, you don't know what you don't know about me, so don't be cruel and judgmental. Yes, I can't stand in line, but I can get up and walk." And I, as long as I'm moving, But people just don't understand that, and they like to look at it as, oh, you're just taking advantage of the system.

Well, you know what? No, 'cause I would prefer to walk. I would prefer

Amy: Yeah

Diane: not to

Amy: yeah,

Diane: I would prefer not to have to. I don't mind standing in line, it's okay, but it's just things that, that people perceive and they, they pass judgment on you. now you also do, your Think Dementia podcast.

So what are some of the most common questions you hear?

Amy: Yeah, the podcast is based on caregiver questions. somebody can record a message at my website and say, one example of a recording was a woman who was talking about her father moving into memory care, and she just does not think he will get out of the car when they get there.

She just does not think it'll work. What could she do? What could she try? or they can send me an email, or do a lot of people do the contact page on my website. They just send me a message through there. And yeah, they're just questions that caregivers have. Like, you know, why are the bathroom cares at night so hard?

What's going on? Yeah. it's hard on both of us. I feel traumatized because mom is yelling through our bathroom cares every evening.

Diane: Yeah.

Amy: and that's not just a question that she has. There's other people who have the same question.

Diane: Oh, absolutely. Yeah.

Amy: And that's the thing, you're not alone.

Whatever question you have, somebody else has it, or they don't know they have it, and they learn from it anyways. And can be more prepared. I have a lot of questions. I think the most common question I get whenever I do any public speaking is, what's the difference between Alzheimer's and dementia?

Diane: Yep .

Amy: And explaining that. That's my number one question I get. A lot of people also ask questions about, what can I do to prevent dementia?

Diane: And

Amy: How do I know if somebody has dementia, and what should I do, and how do I handle that situation if I think someone is showing signs of cognitive impairment?

And the podcast, continues to grow. I do this literally in my spare time, because my work week is I work, part-time with Tembo Health as the care navigator, the lead care navigator, and then I do public speaking and trainings and consultings the rest of the week. So on the weekends and in the evenings, sometimes the very early morning, I'm recording the podcast, and I edit it, and I do all of it on my own and put it out there for the world.

And I just reached 100 countries, which was just such a thrill to see,

Diane: Oh, how fun

Amy: Even if only one download happened, and it... It's just like it's spreading. That's wonderful.

Diane: Yes, yes.

Amy: but yeah, the... Anybody can send me a question because I love thinking dementia and thinking about all the possibilities that might be happening here, and some things for the caregiver to maybe consider that they hadn't considered yet.

And I'm... I just, I've always loved that. That's what I really loved about working in the memory care, too, is that the staff would come over to me, Amy, and just say, showers are not working. this isn't working. What can we do?" And I'd go in and help them figure out what's the shower routine that is gonna work.

What might this person be going through? This person's in the stage of dementia where their, nervous system is hyper-sensitized right now, so they're very, very cold. I learned that with this one woman. She was freezing. If we did not have the water pouring over her head the entire time she would be cold every time they took the water away, and she'd start, yelling and praying and it was horrible for her.

So to hear from me, "Okay, well, what you gotta do is just keep dousing her in water the whole time, and just don't take it away and let it just pour over her head," that isn't something that the- anybody would have considered. Right. But it made all the difference for doing a shower for her.

Diane: Yeah, just keep her warm, you know?

Amy: Yeah.

Diane: Those big showers are hard, especially I've cared for little old ladies my whole life. Now I am a little old lady. And I could tell you, I, there, there's two types of little old ladies, the ones that are furnaces that are always hot, and they're taking off their clothes.

Amy: Yes.

Diane: And then there's the freeze babies, and I'm one of those

Amy: Yeah

Diane: where every I'm cold. I'm just cold all the time. So, when I work with those types of clients, I recently had a, a neighbor that needed help, and the husband says, I can't get her a shower because she refuses. It's just too cold." so I had him throw the towels in the dryer right before we got her out.

We'd, I, you know, you keep the water warm and over her the whole time, and then you put those warm towels over her when the water stops. And it just made it more pleasant, more she was more, it was easier for her to deal with. And she came back and said, "Oh, that is really nice."

Amy: Yep, yep. I had the woman with the shower situation I was just talking about.

After three different tries and kind of figuring out the system

Diane: Yeah

Amy: she looked at me and she said, "Thank you."

Diane: Yeah.

Amy: And she really could not communicate much at all. So that was just beautiful

Diane: Yes

Amy: to hear that

Diane: Yes

Amy: we turned a traumatic experience into something that was really nice, and she felt heard afterward.

Diane: Really nice and comfortable. and, we don't take time to figure, especially in memory care, they just don't take time to figure it out. And so many of the, aides that work in memory care aren't trained to think dementia. And they should be. Now, for caregivers who feel overwhelmed right now, Amy, what is one thing you want them to remember or do differently starting today?

Amy: Oh, that is a great question. Thank you. And I would say, the answer is to think dementia.

Diane: Yeah.

Amy: I want you to look at that person you're caring for.

If it helps, imagine that their head has shrunk along with their brain to one-third its original size.

Diane: Yeah.

Amy: And they've got this tiny little head on their shoulders that lets you know they're always doing the best they can.

Diane: Yeah.

Amy: They don't have the control and the ability to reason.

Diane: Yeah.

Amy: And that, having moments of joy and a sense of humor is another important thing that doesn't leave the brain for this disease. Just thinking about how you're approaching it. Are you thinking about the fact that they're not doing things on purpose?

They don't wake up in the morning and say, let's throw a wrench in the day, and I'm gonna decide I don't wanna get ready, and I know there's a doctor's appointment."

Diane: Yeah. Exactly.

Amy: You know? They can't do that.

Diane: Exactly. So just thinking about, okay, well, with what's going on with their brain, this morning's gonna take probably three times longer than I anticipate, so I'm gonna start it off a little earlier and take my time so we're not in a rush. and always just thinking first about what they're capable of.

Diane: That's great. And I loved your one comment you said to your aide when the, the man was accusing him of saying, "Who has the healthy brain here?"

Amy: Yeah.

Diane: and To the max.

Amy: Yeah.

Diane: I thought that was a good point because it says, "Oh, duh."

Thank you so much. how do people find you?

Amy: Yeah, you can go to my website, which is think-dementia.com.

You can always reach me by email with amy@think-dementia.com. A lot of my questions for the podcast come in by email. And then I have events on my Facebook page, LinkedIn, and, Instagram, all of those.

Google, businesses. You can find information there. I put tips out regularly, just little tips about things that you can do. this morning I was working on that and, putting some tips out like just, take three deep breaths before you start something so that you can be your best for them.

Or when you're helping somebody, with anything, incorporate music into it. Just little tips that are reminders, and I am constantly doing educational events, around the Twin Cities, or I'm attending them myself. Because even if you think you know it all, there's gonna be something there.

There's gonna be a little something in there that's gonna help you be better and be your best. Or remind you

Diane: 100%. Yeah

Amy: Maybe you learn something, but you weren't in that stage yet. the person wasn't needing that yet. And when you go to continually educate yourself, like listening to my podcast

Diane: you're then sparking up that idea of, "Oh- Yeah ... yeah, I remember I learned that," and I'd forgotten about it.

Yeah.

Amy: And it's part of self-care. It really is. It's part of the self-care of the caregivers, the education.

Diane: Absolutely, it is. And, it has, gives a chance to decrease caregiver stress and caregiver burnout when you change your approach.

Well, thank you so much. I really appreciate you sharing your knowledge and information with us today. To my family caregivers, you are the most important part of the caregiving equation. Without you, it all falls apart. So please learn to be gentle with yourself. Practice self-care every day, because you are worth it.