Transforming Dementia Care: The Power Of A Positive Approach

Introduction to Teepa Snow 0:00

- Welcome back to the Reverse Alzheimer's Summit. I am thrilled to have Teepa Snow with us today. I have been looking forward to this interview for a long time. Teepa is an occupational therapist with over 40 years of rich and varied clinical and academic experience. Her experience led to the development of the gems state model for understanding the progression of dementia, and the positive approach training series. Her company, Positive Approach to Care, provides online and in-person education on products.

Teepa presents with an extraordinary expertise and humor for audiences throughout the world. Her expertise is so valuable, I just cannot wait for her to share her tips about how to approach someone with dementia. This is critical information for anyone who is a caregiver or anyone who has a loved one who's suffering. So, let's dive right in. Teepa, welcome, first. - Thanks. It's a pleasure to be with you. It's so fun. I don't know if I should do Dr. Sandison or you know-- - Oh, no, no, no, just Heather, yeah.

- You know, I didn't wanna step on toes, so you always started checking, I'm Teepa and you're Heather. So, that works out great, cool. - I'm so excited to have you here. I wanna just like dive into getting people, like the magic that you have to offer. So, in what ways does the individual providing support, so that caregiver, that witness to someone's experience, how did they affect the person living with dementia? There is an impact, right? it's not all about the person with dementia. There's a lot-- - Oh, it is not.

So, you know, one way we have of talking about it is like, show me the number six on your fingers. And everybody out there, just spontaneously hold up six fingers. And almost always, people hold up one whole hand and then they hold up a digit on the other hand. So, either an index finger or a thumb. If you hold up your index finger, that's the way most people do it anyway. And it's like, you are the problem and I'm trying to help. And so, we see the person living with dementia as the problem or the one that holds all the cards.

When in fact, if we think about dementia as a condition where the person is losing skill, well, I'm an occupational therapist by training, and I'm here to tell you something. If you look at your hand, like, look at the palm of your hand, and you draw a line between the ring finger and the middle finger of your hand, what you're doing is dividing your hand, sort of down the middle of your palm. And on the thumb side, thumb, index finger, middle finger, those three fingers get their feeling and their movement control from the median nerve.

And the median nerve is the nerve that goes through your wrist. It's why people developed carpal tunnel because they use it so much and it stresses. But this is the skill side of your hand. The older nerve which runs down outside and goes behind your elbow, if you've ever hit your elbow, you've hit it. And it's like, "Oh," funny bone, not really. These two fingers, make your hand strong and powerful. So, when you pull those two fingers in, you can make your hand really strong, but not very skillful.

So, in the world of dementia, people are losing skills. Everyone with dementia will lose skill, before they lose strength. So, they can be very strong, but not very skillful. So, if they're losing skill, what are they gonna need for us to support them with

How Caregiver Behavior Affects Dementia 3:40

in order for this to go well? Heather, what do you think? What do they need from us? - Some extra skill or some-- - Yeah, so how many pieces of a puzzle do each of us hold? Three, first we're human beings. So, we have our old relationship, we have the relationship we choose to have, we figure out what we're gonna do with each other. Then we have, for the person living in dementia, they're living inside a body. So, there's this body element. So, if I have arthritis, that's gonna impact me. If I have diabetes, that's gonna impact me.

It's not just my third finger, my brain change or my dementia. So, those are the three pieces for them, me, who I've been and who I am. My other things that are going on, sensation, movement, diseases, wellness, mental health, but then also my brain changes. But then there's us, and there's the environment around us as is how we fill the time. I mean, how do we fill up the time together? So, I play a key role. So, what I thought I'd do is show us a video and you can hear it. So, for those of you who are listening, I'll set it up a little bit for you.

So, I'm gonna show you a little video clip, first video clip, and then I'll actually show us second video clip. Now, to do that, Heather has to be nice and grant me permission. Yeah, she gotta let me be okay here. Let me see, oh, there she did it. She is so nice. Well, plus if she'd like to have this happen, she sort of has to. All right, so what we're looking at is there's a woman in a community, and she's behind her door in her room, and it's 5:00 am. It's 5:00 am, everybody else is sleeping. But if you were looking at this, you would see that the light's on and she's awake.

So, let's see what happens. Let's see if you can listen in 'cause she's at the door. There's nobody. Hey. - Miss, no, hey. - Look, you-- - Look. - I've been trying to call and call, and nobody answers the call thing. - The Phone? - Yeah, the call thing that you guys have hooked up, 'cause I'm out coffee. - You're outta coffee. I need you to go-- - And I'm gonna go get some coffee in the lounge. - Teepa, you can't go. You gotta back in your room right now. - I'm going to the lounge and getting coffee.

- You can't go to the lounge right now. - I can do. You watch me, I walk right down his hall ago. - Teepa, you can't do that. - You are not the boss of me. You guys didn't answer my call. - Well, were you calling the right number? - Do you think I don't know the number to call? - No, I don't know. - Oh, this is, I'm getting outta here. - But Teepa, you gotta get back in your room. - I'm not going. Okay, so Heather, what impact do you think that young man had on my behavior? - It seems like it probably amplified your behavior, because he was telling her she was wrong and she needed to go back to her room.

- How did you pick up on that? (both laugh) - There was an increase in her emotion and her, it just seemed to make everything worse. - Yeah, so the volume changed, the intensity changed, the words changed. She actually swore as she walked away. And was she going back to her room by the way? - No, it didn't help the situation at all. - She actually was going on down the hall. So, I'm not sure it solved anything. And as a matter of fact, it made it more difficult for her to figure out anything. And the relationship was really not going well.

So now, we're gonna watch the same scenario with somebody who has some different abilities. Let's see what happens. - It's true, a lot of people can relate to that, that kinda situation of finding someone, realizing they're not doing what they're supposed to be doing. They're probably disturbing somebody else, and they just want them to follow the instructions. - Yeah, and get, whoa, whoa, whoa. No, no, no, you need to go back. No, mom, you can't do that right now. This is your home. I mean, all the things that we say, because we recognize what they're thinking isn't accurate.

But, and when we say something silly, like, "You can't go there," and it's like, "Watch me." It's like a dare. (Teepa laughs) So, watch what happened. Listen to what happened. So, we got the same scenario and listen this time, see what you notice. - Teepa. - Hey. - Hey. - Listen. - Wow, what's wrong? - Well, this I've called and-- - You called? - And nobody answers. - And nobody answers. - No, and look, do you see this? - Oh Lord, that's ridiculous. - What you think I wanted? - That's absolutely ridiculous.

- What do you think I want? - You need coffee, yeah. - Yes ma'am, I do. - You need coffee. - Listen, yes. - I need help right here. I know, I know. - You know? - It's so frustrating. They have all these rules around here. - Well, they I'm-- - I'm aware. (murmurs) - And nobody answers it. Well, I don't know. - That's ridiculous, isn't it? - You push it the button and y'all are supposed to hello, that's what you said. - Somebody is supposed to come and help, and then you're outta here. - And then I did it, and nobody answered. - And nobody answered.

- Well, listen, coffee. - Yes. - I can take care of this while I'm get, could you do me a favor and just wipe this off for me-- - You want me to. - While I try to wipe all this off? And you can wipe this, and the chair. - This is the thing, they've been talking about you're supposed to do. - If you could help me with that, I can take-- - Do you want me to do here too? - You know, that would be great. I was not gonna ask you for all that, but I don't mind. - Well, just don't take a long time. - I'm not, I'll be right back. - All right.

This is what needed to be done in the first place. If y'all keep it clean, people don't have problems. And then we wouldn't all be locked up like prisoners. - Like prisoners? - Like prisoners. - Yeah, you're doing a good job. - Well, this is what you need to teach people to do. See, you have to just-- - People just don't learn. - You'd have to do that. You've got gloves on, hold that. - Well take that. - This, well, wait. - Got it. - You've gotta do the edges. - Oh, the edges? - So, this is where people make this mistake, and you've gotta do every, and this, see you can't just, see how y'all you open it.

Well, then that's germs. - It is, you are exactly right. - And I know germs when I see them, and now, I'm better, but well, oh good. That's what I was looking for from before. - Yeah. - And you might wanna wash your hands. - I have, that is a good-- - You've got all those things on. - That is a good suggestion. I will take care of that right away. - I'm gonna put these in the trash-- - Right. - 'Cause people, shouldn't reuse them. - People should not. It's ridiculous, but people do. - Well, it's true. - Alrighty.

- Thank you for your help. - Teepa, thank you for your help. - My pleasure. - You would be that one. - That's what-- - Can I get that for you? - Sure. - All right. - You know, next time answer when I call you. - You know, just in case that doesn't-- - Yeah. - I'll come back in five minutes and check in. - I appreciate it-- - All right. - Because nobody else does. - I hate that, I'm so sorry. - Well, me too. - All right, I'll be back. - All right. So Heather, what's your take on that. - So much easier, and everybody got what they wanted.

- Yeah, now it did take a little longer, but during that time, Teepa, wasn't roaming around. She wasn't waking, she was cleaning a chair in the hallway, and cleaning, and she felt purposeful and valued. And when Melanie brought the coffee back, Teepa was like, "Yo, well, wait a minute. I'm not done here." And then spontaneously, she went back in her own room and was gonna drink her coffee. And what was the alert Melanie got from this? She need to check in a little more often. - Right. - 'Cause did Teepa know about the call bell system?

- [Heather] No. - What did she think she was supposed to do? - Use her phone to call. - Oh yeah, so we know that Teepa's brain isn't working well, but getting upset with her didn't help. So, the quality of what we do and how we do it makes all the difference in the world for both of us. Because a skill that Melanie developed on how to help Teepa's missing skills, and all of a sudden, things are very different. - Very different. Yeah, she's less frustrated. - Melanie's not frustrated. She knows what she needs to do as supposed to Matthew who might very well quit, what he's doing or need out or need break, or like, "I don't know what to do with her," or call an emergency service.

And then Teepa ends up in a psychiatric setting, or ends up doing something she shouldn't and goes outside. And now, we've got an elopement issue. And that's what the difference is for me is when we have skilled supported carers, well, we ended up with this better situations and better brain function for both parties, frankly.

Dominant Side and Hand-under-Hand Support 12:40

- Yeah, everybody's under less stress, that's amazing. So, understanding these skills, and there's a lot of small practical skills that you teach, and some of them, like I've heard you say to approach from the dominant side, can you explain why that's important, how somebody knows which side is dominant? - Yeah, so one of the things you can, I mean, a real simple thing you can do is, have somebody roll up a piece of paper, like, just roll it up and have them like, I'll do it. And spontaneously, if you hold it out, sort of right in the middle in front of you and say, "Look through this."

And they'll put it up to their preferred eye, and they'll use their preferred hand to take it. So, it allows me to look at what eye they like, what hand they like. But what it turns out is human beings, are more comfortable using one side of their body than the other. They're more skillful using that side. And their wiring into that side, has more synaptic connections for fine detail and skill development. So, if you were to open a jar of peanut butter, just imagine, go ahead and open a jar of peanut butter, try.

Classically, you hold it with your non-dominant hand, and twist the lid with your skilled hand, your dominant hand. And now, I'm gonna have you get a knife out of the drawer. So, you pull the drawer open, you'll use your dominant hand classically, and then you get the knife out with your dominant hand. And then you'll close the drawer with your non-dominant. And you don't even think of doing these things, but you're crossing the midline for a task, back and forth, back and forth. And now, you'll pick up the jar with your non-dominant, get the peanut butter out.

And now, you gotta figure out how to pick the bread up. And you're like, hmm. And so some people will lay the knife across the top of the jar, pick the bread up with their dominant, put it in their non-dominant hand and then spread, because I mean, it's that much difference in skill development. So, if that's how much skill difference there is, then which side do you think you might prefer somebody, you don't know very well or that you're gonna do something with? Which side do you think you'd rather have them on?

- Yeah, and the dominant side makes a lot of sense, yeah. - Yeah, I'm just more comfortable with you over there. And if you wanna try it out, just have somebody stand and mess with you a little bit on your dominant side and then have them do it on your non-dominant. And almost universally people go, "Yeah. I didn't think I cared, but I really don't like it." And if you eliminate vision and they come up and do it, then you'll find you actually might startle more on one side or jerk more, or actually throw your arm out on your non-dominant side for more, just like a sense of "Whoa, I really don't like it."

Added to which if you're gonna assist me, if you're on my non-dominant side, you're trying to stimulate a part of my body. That's never been the skilled deliverer of service for me. - So, this can create a lot of ease, a bit more ease in the relationship. This is a challenging situation to be caring-- - [Teepa] Yeah. - For someone with dementia. And if we can find these little windows to making it a little bit more useful, then the whole day goes a little smoother. - Yeah, so I mean, including setting up the environment so that what people might be looking for could be toward their dominant side, or if you're trying to get them to look on the other side, just be aware they may be missing it entirely.

And so, they might actually say, "Where's my coat?" And if we just say, "Well, mom, it's right there." It sounds like we're angry rather than, "Oh, you're looking for your coat. It's over here." And using a visual cure, a gesture to point to where it is, can guide the eyes to where the coat actually is. And if you start noticing, wow, they're really guiding to their dominant side, you may wanna adjust the environment to match, so that people don't come in from their blind side and startle them and cause someone to be unhappy with someone before you've even done anything.

- Got it. You also described this hand over hand technique. - Yeah. - [Heather] Can you tell us more about that? - Yeah, and so which side of your hand do you do more with? And just-- - The palm. - [Teepa] The palm. Okay, so what do you do at the back of your hand. - Gaze out that adoringly, like nothing. (murmurs) - Go away, go away. So, where we put IVs in them. - Yeah. - And so yeah, none of those things are really positive. The palm of your hand, however, is used to interacting with the world.

It's also where you have incredible amounts of sensation at the tips, and you have pressure awareness in the palm. What appropriate receptive input in here? And so, what I can do is if I have somebody, so I have to pretend because I don't have someone here. But if I take my, let's, we shake hands with our right hand. So, take your left hand and face it forward, take your right hand and face it towards you. Now, shake hands with yourself, but you have to stick your little finger up, like it's a thumb.

It's a little tricky. Now, the left hand, stick your, there you go. So, shake hands and now rock your hand up, your right hand upward. There you go, and lay it out, so that your left hand is resting on top of your right hand, okay? So, if you were doing that, what you'd have is you'd have the person who's living with dementia who's not able to do some things. And then I would have my hand holding the tool that we're going to use. So, their hand is in my hand, palm to palm. And so when I bring it to their body or bring it to their face, their brain goes, "Oh.

I know that my hand is coming to my body, that makes sense." So again, I'll show you a little video clip to give you a visual on this, that might be helpful as we're talking about this. This is a lady very, very, very late in dementia, okay? As a matter of fact, immediately prior to this, one of the reasons I was asked to take a look was that everybody was thinking probably time for hospice, because she had lost 20 pounds in the previous month. She was pressing no interest in things. And when they were trying to give her a bite, they were using, you know, trying to get the spoon in her mouth, what was happening?

She was turning her head left and right. And so, it would take like a half hour to an hour to try to get maybe 20% in. They had tried a puree diet, and that she then refused all ice cream after that, as well as the puree 'cause she didn't like the puree. She seemed to like texture, but they couldn't get her to open her mouth. And she has no ability to speak. She's had 13 strips. So, I'm gonna show you what happened when I provided some support. That was good. There you go. - [Lucille] It was so hard to come out that big.

- Yum, it's 'cause her hand is coming to her mouth, versus you poking her in the mouth with your spoon. And her brain going, "Whoa, what's that? Oh wait a minute, oh." - [Lucille] Yeah. - So, what you see there, Heather, is my hand doing that skilled movement of the spoon, and her hand resting in my hand so that she can feel the movement of the spoon to and from her mouth. And when you watch this next bite, you'll be able to see, before the spoon actually gets to her mouth. she swallows what she has in her mouth and she's ready for the next bite.

So, what will happen? - [Lucille] Yeah, yeah. - Oh, it's okay. And this is like, "Oh, okay, I'm eating," got it. Hey, so let's do a scoop. That's pretty easy once I know what it is. And she's finishing her chewing. Here you go. Wallow. Wow. And she opens her mouth and takes the bite, which is the aid is like, "She never does that. She fights, she even throws her head around. She thrashes, and it's like, well, that's because she didn't understand what you were trying to do. And with this technique, it provides opportunities for what's the first step.

What is it you're trying to get me to do? Oh, brush my teeth. I know brushing my teeth, I can do that. And so it's not uncommon for people to simply take over and start to do things. But the really cool part in this video is that my connection to her with hand under hand, actually, changes something else. So I'm gonna let you watch it for just a couple more seconds here. (Lucille laughs) Ain't that fun? - Oh my. - [Teepa] Both of you're gonna have a better time. And what I'm doing is supporting under elbow.

And so, that gives her a little added information. - Okay. - And when I do that, she can sit upright it a little bit better too. And I can judge. - Is this not amazing? I get thrilled when I learn something new. - Ain't that fun? We're gonna try the same thing with Ms. Francis in a minute, and see if she's okay with it, see if she likes it. She eats. Now, what I want you to see is I had turned my body to look at Ms. Francis. And I said, "We're gonna try this with Ms. Francis in a minute, and see if she likes it."

And my friend, Lucille, who tends not to be doing anything, perks her head up, opens her eyes and looks where Ms. Francis is. And it's like, so what I was able to share with the family is, she's still here. She's still attending to what's going on. She may not be able to interact, but she's picking up on things. And when she gets something, she can respond to us. - Wow, how incredible. So, you talk about the gems and the gems state. And I think this is just such a great way to start thinking about the people that we're interacting with and help them to shine as you say.

So, take us through the different gemstones and then these states. And tell us a little bit about how we can make each one of them show up in the best way possible. - Yeah, so a sapphire is a true blue stone, and it's like the sky or the ocean or the river. It supports life. And so, that's us at our most flexible, our most changeable, and our most able to do something to be supportive. And so, when we're in sapphire state, we are aware of what's going on, but we are there to support others. And that's our main thing, is we're very tuned into what's going on around us and our skillset is high.

So, we've gotta be rested, and we've gotta be alert, and we've gotta be tuned up and tuned in and refreshed. We'll get back to that later, but you can't be that 24/7. I don't care what you wanna do. You know, you've gotta recover every day. And then, we have another gem state, and that's diamond. And diamonds, what colors are a diamond, Heather, most of them anyway? - [Heather] They're clear. - Clear, they're clear, they're sharp, but they can also be sort of rigid. So diamonds like routines, they like to know how, they have lots of facets and they can be absolutely lovely, but diamonds can also cut, because diamonds like it the way they like it.

And when they get what they like and they can do it the way they've always done it,

The GEMS State Model Explained 24:10

we're fine, and there's value in routines. We like our routines. People need routines. The challenge is when the routine we've been using isn't working so well, diamonds have a hard time with change. They also really often are very familiar with who's the box, and diamonds either like to be really well connected or they wanna be in control. And so, I might say Dr. Sandison, I have a bone to pick with you. And that should be your warning. "Oh, she's in cut mode," as supposed to, "Gorgeous. Sandison, oh, she is the best.

Oh my heavens, I love being with her." "Dr. Sandison, now, this other lady that I've been talking about, that poor thing, she is just having so much trouble. I am so glad I do not have trouble." (Teepa laughs) Everybody's like. Some time, diamond is that place where we could be, you know, absolutely wonderful, but be aware that ooh, you know, it can get sort of cutting here if I don't get what I like, or you're trying to push a change. "What do you mean I can't drive? This is ridiculous. Who said I can't drive?

I can, I've been driving since I was 16 years old." So, this is that place where imagine you are my kid and you're gonna tell me that I can't drive. - You're not the best of me. - No, it's more like, you need to practice. - [Heather] Okay. - I brought you in this world. I'll be happy to take you right back out. (both laugh) It's a little firmer than that. - [Heather] It's a little firmer. - Yeah, and so, you know, mom, I was wondering, how do you feel like you doing with your driving these days?

- I'm a great driver. - There, oh, you've been great driving. Oh, huh, I thought you had had some trouble getting back from church the other day. - No, no, I had no trouble getting back from church. That's easy, I've been doing that for years. - You're absolutely right. You have gone to that church for years. So, what I just figured out is, boy, I have a nice, rigid, solid diamond, who's clear, sharp and inflexible. So, as a sapphire, I'm gonna go, "Okay, well that's not gonna get me anywhere." Talking about getting lost and maybe not wanting to go by yourself, so I gotta come up with another strategy.

So, not driving is an option, because pointing out her flaws, and that's why we have so many people out on the road driving without licenses because I don't care who takes their license away. I'll drive in my tractor down the road if I want to. You are not in a new car. You're not the boss of me. And it's because we struggle with how to support diamonds, who are unaware of changes. And we aren't quite sure how to bring in two awareness in a way that doesn't cause lots of stress and distress. So, then we have our emeralds.

- Well, but just go back to that. Is there a tip there? - [Teepa] Yeah. - So, how do we help our diamonds kinda get that self-reflection that might help them make changes for safety, especially? - Yeah, well, I have a huge favorite ask of you. I'm wanting to remember the route to the church, and I find if I don't drive, I don't pay attention. Would you be my navigator and double-check me that I'm going the direction and the way I'm supposed to? Because I get busy talking and then I'm not being careful.

So, if you be my passenger, let me drive and tell me if I'm going the right way or. - Love it, all right. So, put them back in control, give them agency-- - Give them another job. - Helping they have a job, and that sense of purpose. - I have a huge favor to ask of you. I mean, when I say to someone, I have a huge favor, ooh, I could really use your help. Could we try something? Those are all phrases that acknowledge the person's expertise, their skill, their shine, and I'm here to support that.

You know, I know, and sometimes I'll even say, you know, for right now, the doctor, doesn't want you driving. They're doing some medication adjustment. And so, for right now, they're asking that you not drive. We'll bring it up the next time we in. But for right now, let's just not push the window here. I hate it too, I hear you. It doesn't feel fair, but for right now. Now, did I actually throw the doctor under the bus? No, I said, "We can talk about it the next time." What do I wanna let them know?

It's coming up again, why? Because I mean, frankly, when I lose the ability to drive my whole life changes. I mean, I think we underestimate how being able to move around in the world is part of feeling like an adult. - Of course, of course, right, and-- - Yeah. - And if we're not self-aware enough to know that it might be dangerous, then there's no reason to give it up. - Yeah, exactly. And if I can't figure out a way, how to start the transition, other than a fight, we often end up, you know, if you try too soon, they can pass the DMV test.

(Teepa laughs) It's like, 'cause their brain goes, "If you can't do this, you will be trapped forever." And it's like, "Oh no, okay." And it gives me everything I bring, puts on the gas and I shine during the DMV test. And it's like, "How could she have tested?" Did they not look at the mirrors on the side? I mean, you're just saying, "No, no, no, but she passed it." It's like-- - Miracles. So, I interrupted you, emeralds. - No, yeah. So, well, you know, then we have the emerald state. Now, emerald, compared to a diamond, what color is an emerald?

- Green. - Green. And so, green means not clear and sharp anymore. Emeralds are a little softer, but they're also flawed. A true emerald, every real emerald actually gives it value because man-made can be perfect, but real emeralds are flawed. And so, in the emerald state I have flaws, and the flaws are getting evident. So, this is where it gets, you know, like something is going on here, because what you'll notice is, I sometimes get lost in time or place or situation, I'm not as clear about relationships, I'm a little more vague on my words.

Sometimes, you know, the thing that I was talking about, the what you might call it. (Teepa laughs) Isn't that something? You know, what I mean? The one who goes down to the, and he gets them and he brings them back. You're like, "Not sure what we're talking about." Or I get stuck in a loop and I keep doing something over and over again. So, I can get into something and do it, but then I don't know how to stop doing it. I just keep repeating it. So, I might be eating a cookie. Oh, I think, I'll have a cookie, eating a cookie.

Wow, you know what? I think I'll have a cookie, eating a cookie. How many cookies will I eat, Heather? You bet. - All of them. However many there are. - When the bag is empty over time, 'cause I can literally, once I get stuck in this loop, what I'll do is, my brain will go, "Ooh, sugar, I love it. Oh, I'm feeling that drop off." You know what? I have a cookie, and I have no idea that I have actually consumed this many cookie. I've none because I'm looping through it, because it's offering me comfort, 'cause I don't know what to do.

And so, every time I go in the kitchen, I do something, or I go in the kitchen, see the dishes in the sink, and think, "Oh, I already ate." The problem is those dishes are from yesterday or the day before. I already took my medicine, 'cause I take it every morning, but I'm not catching the difference, between I do it every morning versus I did it this morning. And I think I did. So, I'm not doing any of this on purpose, but my day is getting a little jumbled. And I may actually look at you and go, "I know you, where from?"

And you're my daughter, but my brain has you younger. It has me younger, so I could look in a mirror, and I'd say, "Oh my gosh, there's some old woman in my bathroom. I can really use your help, could you get her out? Because I need to cope, but she won't leave. I've smiled, she waves, but I can't get her to do anything." Well, I also, I'm pretty limited in how much data I can take in at a time, and so, we'll often notice that it seems like the vision is more binocular. So, they're really focused on the right here or they're busy looking around and they miss right here.

But either way, it means they're missing data that we would be taking in. And so, we often surprise them or they miss things that are important. So, some common kinds of issues here is, "Listen, I need to go home." And you say, "You are home?" "No, no, I'm talking about my house." "This is your house." "No, this is not my house. I live at 609 Hess Street." And you go, "Mom, you haven't lived at 609 Hess Street, since you were a kid." "No, I've lived there forever. It seem, what are you talking about?

You're not making any sense. Who are you? What are you doing here?" And so depending on how you react to this or respond to this, react automatic, respond thoughtful. It really does tell us how's this gonna go, because the other piece is my internal sensors, are not as accurate. So I may be making mistakes about continents, not getting where I need to be quick enough or not recognize I shouldn't do that here because there's sort of an emergency, or not changing my clothes or bathing. 'Cause those are some very, with a frequency, because I'm not picking up on smells, as problem smells.

And I may, and then I hide them because I recognize, oh, you shouldn't do stuff like that, so I hide it, 'cause nobody wants to be stupid. What I don't notice is everybody can smell it because I'm starting to have issues. So, you know, I'd like to stay busy and I still can do things, but I often need some support to transition, and I need support to build a day. I need support to run through a day. But I'm still able to do a whole lot, once you acknowledge what's missing and then you figure out the right support.

(murmurs) - Say that again. - Don't like bossy, don't be bossing me. So it's like, how do you be supportive? And when I start doing, ooh, keep up. Yeah, but it works a lot better if you go, Teepa, versus, oh Teepa, where's your walker? It's like, okay. If I knew I needed it, I would have it. If I don't have it, how many of you think I probably know where I left it? (Heather laughs) - Unlikely, right. - Unlikely, so, you're like, "So Teepa, hey, I see you're getting up. Tell you what, let's go see if there's something, I think you have something somebody wants you to use while you're walking around.

Tell you what, come with me and let us go see." And I'll do hand under hand support to go down the hall if they have pretty decent. And even sometimes, I prefer hand under hand to a walker. 'Cause if they have a walker, they tend to leave forward and push into it, which gets them off their center of gravity, and depending on a device that isn't always gonna be there. - Mm-hmm. - So data says, "Walkers, they never used it before." Really question whether you should be giving it to them now. - And same with a cane?

- Same thing, unfortunately, with a cane, 'cause they just get left everywhere. And if somebody's used to sort of relying on it, but sometimes, it's there and sometimes it isn't, they're gonna be reaching for something. So, maybe it's time to modify the environment, to provide some things within arms reach that are stable. (indistinct) And maybe work on strengthening, work on balance and do some tai chi, which evidence says, "Reduces the risk of falls and fall-related injuries." - I love it, I love it.

So, are there other gems, rubies? - Nah. Yeah, we've got amber's compacts, so amber is of all the gem states. How do you get amber, Heather? Do you know how you come up with amber? Do you know what it is? - The sap out of trees, a prehistoric sap. - Yeah, and so often something, some kind of inclusion happens. Like something gets caught in the sap and then it hardens around it. And so, what I describe it is, it's something caught in a moment of time. So, these are people caught in a moment of time and it's all about a sensation.

So, if I like a sensation, I want more of it. And if I don't like a sensation, it's gotta stop now. But I live from moment to moment. So, if my eyes see something I like, you can just about bet. I'm gonna try to travel toward it. If my eyes see something I don't like, I'm gonna either wanna get away from it or wanna push it or get it away from me. So, it turns out that the human body, is not equally distributed for sensation. We have high spots. So, right around the face, the front of the mouth, the tip of the tongue, the lips, the nose, right in this area are high sensory.

The tips of the finger, especially, these three, high sensory, and the front part of the foot, the toes and the bald foot, much more sensitive than the heel. The heel picks up pressure, but it doesn't have a lot of sensitivity, other than pressure. Out here, that's what allows you to have amazing balance and skill and ability to dance. And then we have genitalia, amazing sensory control and motor control plus sensation because wherever you have great sensation, you tend to have pretty decent motor control.

So, what we have is, you know, the ability to control urine and feces down here, but it's also very sensitive. You know, because you want it to be sensitive so that you can pick up on things, and then we have the armpits. Okay, so now, where does a lot of personal care (indistinct) take place. - Under the arms. - Under the arms, around the mouth and face right here, the hands. But I also, these are the tools I use. And so, I'm engaging a lot, doing a lot, but what might be happening, I'm losing some skill, but I still have some.

But now, what I'm not always sure of is, what is this for? And then you might watch me, oh, so what did I figure out. - That it's a brush, but it's for brushing, your toothbrush, it's not for brushing your hair. - Or I could get the other in and try to do something with this, this is stupid. Because I got the wrong end or. So, this is the point where you need a lot of caution. So, your brain is gonna pick up on this in a heartbeat. So, what are you seeing? - I see a hand sanitizer. - You do, don't you?

And what is this? - I see water. - Yeah. Oh, that's a little one. (Teepa laughs) So, what is your instinct? Instinctively, what did your brain think when I started to do this? What did you want to do right this minute? - Grab it outta your hands and take it away. - If you grab it, so right in that moment, I'm amber, but who else is turning amber right in that moment? - Oh, I am. - Because if you and grab this, what am I gonna do? 'Cause I like it and I want it and you're grabbing it. What can happen?

- Your strength is gonna take over. You're gonna knock me out of the way and drink it anyways. - And who's gonna fill out the incident report? (both laugh) You. - Me. - So, we only hear your point of view, is like, "I was drinking and she came and attacked me." So, the thing about amber is you've gotta be on caution alert all the time because I don't have safety awareness. - And again, setting up the environment so that they're at the minimum risks. - Yeah, so I'm incredibly curious about things, and what we hope tend to do is, "Oh, that tastes like shit."

How much of it do you think I'm gonna take? - Hopefully, not enough to kill you. - Yeah, it takes quite a bit of hand sanitizer, I think, to kill you off. I mean, but you could learn from it and go, "Yeah, let's get rid of that. Here, try this." And you're much more likely to get me to take something. Guess what, this would work better if it tasted like something. If you wanna hydrate me having it look like nothing and taste like nothing, isn't gonna inspire me to take it in at this point. So, you're getting it, aren't you, Heather?

You're certainly like going, "Yeah, yeah, yeah." So this being in an amber state, a lot of care that we wanna deliver may be a verse. And so, we've gotta figure out a way, and that's where this hand under hand can come in so handy, because we give a cue. Oh yeah, I got it. And when we give a cue, it helps reduce the distress state. Just something to think about as a way of supporting someone. So ruby, what color are rubies? - Red. - Red. And what that means is all fine skill stops. And what we have is strength.

So, we have big movement, we have that in him, and we have the (indistinct) You're gonna love to go down, down, down, down." So, what we're gonna have is rhythm. We're gonna have automatic. And so what that means, people at this state can dance incredibly well, but be able to walk very well. They have more likely to have monocular vision than binocular vision because binocular vision means you have this ability to have vision across the center, access, the optic chasm is working well. And so, I have stereoscopic depth perception, so, I'm likely to not have depth perception.

And so, you'll sort of notice that when I walk, when I come to something, I'll reach my hand out and check it out with my hand, sort of as a flat padding motion, and I'll often do both. But my movements, I tend to be more rounded through the shoulders. My head is off and down, and I'm taking small steps as I'm moving forward, unless you turn on music. And then suddenly, I might be able to just like really go to it because I'm pulling in the cerebellum, I'm pulling in automatic reflexive kinds of pattern.

But I also have an incredibly high risk for falls and fall-related injuries. But I can be really strong and I can be really scared sometimes, because things happen, but I can also music, poetry, prayer, and counting tend to be sort of preserved abilities. And the rhythm of speech is still present. (indistinct) (Teepa laughs) Yeah, pretty good. - Wow, so I'm just so fascinated, you know, as a clinician, what do you think is going on? Is this sort of the amplification or like the signal of somebody's personality that they had getting more extreme or is it more the part of the brain that's affected that is creating different patterns?

- Yeah, so we have this combo of I'm still in here. And you know, how much I kept myself from showing before my actually, or how I showed myself before might be altered because of loss of skillset. So as whereas before, I would've done a lot of things, I'm a very strong own doer and I love to help people and do things. Now, I mess with stuff, or now I'm getting into things and tearing things apart because deconstruction is easier than construction. And so I'm grabbing, and so this is, you know, I'll go through my hunting gathering kind of phase and those kind of things, but I'm doing what I can do with what I have left.

And so, you'll often still see me be, if I'm more toward an introverted self, like I like to be in control. And I like people fine, but I wanna be in control of stuff. And I like stuff more than I like people. Then you'll start to see me, the only time I try to interact you is, when I need something. Whereas if I'm a connector and I love people, you're gonna see me at you all the time, (indistinct) With no respect of its space. And I'm a little intense. So, it's sort of probably a combination of things, I think.

- Yeah. - Yeah. And so, the final gem is a pearl. And I selected a pearl because you find a pearl inside an oyster shell. And oyster shells are ruled by reflexes. And at this point, the body is fairly reflexive, and you know, slam shut, but what have happens is the voluntary movements, are being eliminated. And so, it tends to be that a person has stronger flexors, forward flexors and abductors. And so, we see people go into what is often described more as a fetal position, which is that position we come into the world.

Well, you know, with dementia, it's often a position we might go out of the world, but the older techniques where we try to stretch and put people in splints and do this really, you know, ow, we actually cause lots of harm in those situations because the muscles are turned on and I don't know power to turn them off. What I can do is do relaxation things and comfort things, but I can't stop dementia at that point. I mean, we're talking about, we are way far along the journey here and reversing things.

No, but you watched how a woman could go from not eating at all and losing 20 pounds in a month. Within a month, she was back to her previous weight and she was eating regularly, but that's temporary, but it's a gift. If you're the person who's trying to make sure

Practical Communication Tips and Burnout Prevention 47:40

that you're not, it wasn't that she wasn't hungry, and it wasn't that she wasn't interested, wasn't that she wasn't willing. The problem was with all the stroke, she didn't have movement prematurely and hers was low tone, because she had had so many strokes and her inability to have language. So, she was really inside there. And that moment of looking up at her friend down the road, really gave us that insight into, wow, she's got moments of presence, for sure. - Yeah, just knowing how to approach this is what can open up that world of possibility.

- Yeah, and so it's so fun once you start to go, "Oh, I wonder she could be in a, you know, maybe she's in an amber moment." So she's like high sensory need. It's like, what kind of things is she looking for? Things that she can crunch. Okay, "Oh, I found some bubble wrap. Let's go show her the bubble wrap. Let's try the bubble wrap, see if she likes it." Because when I get what I like, how satisfying. I'm not seeking other things, I'm not doing things, you know, I wanna look in drawers. Okay, well give me some drawers to look in and pull stuff out and you know, and some people can be very precise folders.

You know, like, so if I'm in an emerald state and I wanna fold, you know, give me a surface and stuff to fold up or a thing to mix or you know, it all depends. But you know, certainly, it gives us directions to travel, to offer the right support, so that we both do better. - Yeah, everyone's better off. Everyone's less stressed. So, we've been talking about this, but I'm wondering if you have any other practical tips for helping to support someone living with dementia. - Yeah, one of them is classically, unless, you know, the person has really significant vision loss, always offer a visual cue, add in a verbal piece of information.

And only then when you think you've got that, do you do touch? So if I, for instance, I wanted to come up to you and say, "Hey, you were looking down." Let's say you're looking down. You're not looking up at all. I will go, "Knock, knock. Heather." - Yeah. - "Hey." Now, what people out there on radio land or audio land can't hear is, I went, "Knock, knock," because I'm gonna take you back. Knock, knock. - Yes. - Okay, now remember you're in fifth grade, Heather, it was a long time ago. Not as long as it was for me, but a long time ago.

Knock, knock. - Hello. - [Teepa] No, oh my-- - Who's there, who's there? Sorry. - There you go, I knew you could do it If you put your mind to it. Knock, knock. - Who's there? - [Teepa] Banana. - Banana who? - Knock, knock. - [Heather] Who's there? - Banana. - Banana who? - [Teepa] Knock, knock. - Who's there? - Banana. - [Heather] Banana who? - Knock, knock. - Who's there? - [Teepa] Orange. - Orange who? - Orange, you're glad I didn't say banana. Now, do you, it's such a stupid joke. But because we use knock, knock jokes, when you're like in grade school, knock, knock is, do I have permission?

So when I say, "Knock, knock," it's, can we have a back and forth? Can we do a back and forth? And so, when I go knock, knock, it also allows me to learn, how long does it take you to go from whatever you are doing to me? And so, I went knock, knock, and it was (indistinct) head up. Heather, hey, and so a big smile plus a hand near my face because I still don't know your gem state exactly, except you were a little slow on the knock knock. So, my hand is up near my face, in case you have binocular vision.

And I go, "Hey," and I offer my hand in a handshake. And so, what I'm calling on is an automatic back and forth. And if you get it, you'll offer your hand, and I I'll shake your hand and I'll slide into hand under hand and I'll move to the side. And if you'll let me, I'll keep your hand there. And I'll say, "Heather, it's Teepa." Now, I'm from North Carolina and you're from-- - California. - California, wow. West Coast say. - That's right. - Yeah, oh Heather, I grew up on a farm and you grew up-- - At the beach.

- At the beach. Oh yeah, now I learned to swim. Did you learn to swim or something else? - I've learned to swim. - Yeah. Any surfing? - Yes. - Now, for those out there, who aren't watching, what did I do right before I said the word surfing. - Say, mimed it, to get the visual. - I did mimed. Yeah, I did sort of like a balancing thing, so that I gave you the visual cue of the word I was gonna produce before I gave the word. So, I made it easier for your brain to go locate the word and find surfing.

And I gave you the visual, until your brain went, "Yeah, surfing." So, I didn't just throw it out of there, like have you ever been to Malibu? Because then I'm counting on you knowing the word, Malibu, being able to locate it, get its meaning, and give me something back. And given the speed with which you did the knock knock answer, I wanna make sure we're gonna match up so that I don't go too fast. I don't ask too much. So, you start not wanting to be with me because I make you uncomfortable. - But you're connecting in a way that then when it's time to get to the bathroom or time to get to breakfast. - Yeah, so then it's, oh, Heather, could you do me a huge favor?

Come here, I wanna show you something. And I did a little come around signal and I move my body away a little bit. So, you meet what we did is, I signaled done conversation. Let's go look at something and do something. And so, I gave you a cue that's likely to be a responsive on your part cue. And so I'm setting us up for success. And so, those are called positive physical approach, positive connectors and positive action starters. - Wow, and caregivers, they suffer with burnout. I mean, this is just sort of the reality of caring for someone with dementia.

It can last for a decade or more, and it can last 24 hours a day. What do you suggest for people who are facing burnout? - I first will ask people, how well are you breathing? Because people do not realize how much they're holding their breath, how often they're depriving themselves of oxygen, how rarely they do. (Teepa inhales) They actually check in with what's your oxygen flow. 'Cause I can guarantee you if you're depleted, you're not oxygenating well. I mean, just basic oxygen flow. And so, I'll say let's try something.

Let's set an alarm that goes off five times during the day. And every time your alarm goes, I want it to be a friendly alarm, not (indistinct) but something that's friend. I want you to go. (Teepa inhales) (Teepa exhales) Okay, now do it again, real deep. (Teepa inhales) (Teepa exhales) (Teepa inhales) A bit more. (Teepa inhales) Now (Teepa exhales) So, tell me how you're doing? Here, here or here. - [Heather] Much better. - Yeah, so one of the realities as a carer, who's getting burned out is as a helper, I gotta be careful that when I come in, I don't, you look for burned out.

I'm fine, or yeah, what do you expect? And instead, I start with, let's bring your o2 up a little bit before we start the conversation. Because if you're telling me you're burned out, typically, I would say, "I believe you. I think you are." So, let's give you a little oxygen flow so we can talk about this, and you need a little more space. We gotta hold a little space here. And then when I go, how are you doing here? Here, here or here. It gives you a range of what maybe is going on. - So, this is a thumbs up, a thumb's in the middle or the thumb's down.

- Yeah, so where are you in this continuum? And so I think by giving it that that's a real different than, how are you doing? I'm fine. How are you doing? Oh, it's awful. You know, it's like, tell me two things that are going okay, or not as awful as the rest. And what's one thing you wish were different. Two things that are going okay, and one you wish was different. And I will tell you if somebody's burned out, they'll start, oh my God, it's everything. And it's like, I hear you, but we're gonna start with two things that are going okay.

I don't know. Okay, what's not as awful as it could be. Well, she's only not taking a shower. I can at least get her to washing her armpits. Okay, cool, so she's getting the armpits clean. Hey, that's a plus, but she won't take her shower, the armpits are getting clean. Yes, what's another? And so sometimes, really helping people to look up and out a little bit as a start. And then what I'll say, "It sounds like you really could use a break here." So, tell me what your team looks like. That's when you hear, "What team, I'm at it."

So, it's like, "Whoa, whoa." So, you're on the job 24/7. Hey man, you know what would happen if you weren't on the job? Yeah, wow yeah, so what's gonna happen is, the person's gonna lose everything they know. And so, this reality of, if we can let at this go longer and longer, when this transition does happen, 'cause it's 40% of the time, we lose a carer as a primary carer, before we lose the person living with dementia. Now, I don't mean that they die all the time. I just mean they can't stay to primary carer.

But what that means for the person living with dementia is, I've lost my anchor, I've lost my primary, I've lost my comfort. I've lost my second brain. I've lost my support. And so, I encourage people to think hard about, okay, if we don't want that to happen, we've gotta figure out how to spread the load a little bit more. And I mean, it may be uncomfortable. So, where are you uncomfortable that I can help? Like, is it asking other people to kick in? Is it looking for a resource that isn't a classic resource for you?

I mean, are you a lone wolf, and we're asking you to work with others? Because I mean, there's all kinds of carers. Males are particularly at risk, and who's more likely to develop some forms of dementia? Females. So, you know, they might have a female partner. They might have a male partner, but if it's a male partner males are notorious. I'm sorry, but they tend to be notorious for trying to look it up online and do it on their own kind of thing. And that makes it really stressful, because frankly, trying to work with others or stepping back and not knowing what to do, and then feeling bad about it.

So, you know, it's burned out, is very, very, particularly, since COVID where people got dumped into situations that, oh my heavens, you're doing work, you're doing kids, you're doing care, all from one location with somebody that you didn't really intend this. And you didn't even realize how bad it was, until this happened. And we lost the other person because they got COVID or something happened to them. And now, all of a sudden, you're assuming so many responsibilities. - Yeah. Sounds like getting help sooner rather than waiting.

So, kind of anticipating that things you may need more before-- - Things that are needed. Yeah, so, and making sort of who's your team, when it gets to be 24/7? Who's gonna take some these hours? There isn't anybody. Let's start making this plan now. The other one is sleep. I'll often check with people, so how're you doing with your sleep pattern? What's sleep? Yeah (indistinct) What are you eating? Comfort food. (Teepa laughs) (indistinct) So all the things we know that are risk reducers and health promoters, it's like, cares sort of give it up, and it's like, well, now you're caring for two people.

I'm not sure that eliminates your need for this. So, figuring out who can do some of these things with your person while you go do some of them for you or with someone, so that you, 'cause what we know is carriers actually stick with a regimen better if they have a partner that they've promised, they'll go do it with, than if you tell them they just do it on your own. They'll give their self up. But if they promise someone else they'll show up, they're more likely to follow through on it. - Excellent, what a great tip.

Teepa, you have so many incredible tips and just so much to share with the people who are caring for a loved one with dementia, and of course, for professional caregivers as well, what you bring to the table is just absolutely valuable and so critical for this community. And I cannot thank you enough. I also want people to understand how they can get even more of your magic. So, tell them the books online, directly communicating with you, having you in to do workshops, like what's available? How do they find out more?

- Yeah, so we have a website which is pretty easy to find, 'cause it's just my name, teepasnow.com. And we have free resources. We have courses, we have products. We also have an 800 number, which is 877-877-1671. And when you go, you can get up with us. We have info@teepasnow.com, because we really are, we're on TikTok, we're on Facebook, we're on Instagram, we're on Twitter, we're on Pinterest, because what we've found is, boy oh boy, dementia is everywhere. And it affects people of all ages in one way or another, and you know, being available when people need something.

Oh, we have YouTube channel. Oh yeah, that too. - I can give you a testimonial for that. I've watched all of your videos on YouTube. We share them in our (indistinct) team meetings. And we are so excited to collaborate with you more and have you out to train our caregivers because it is just so critical that people understand how much of an impact they're having on the person they're caring for. And then they have, they're empowered to use the phrases, the approach, all of these tips that are really very simple, once you know them, once you're aware.

And it just changes, it absolutely transforms the experience for everyone. And so, I'm just delighted that you've been here to share your wisdom with us and couldn't be more grateful for your time. - Oh absolutely, it has been my pleasure. It is a joy to spend time with you. You are such a brilliant person, and what you're doing with people and for people and around people, creating this opportunity for people to lift up and have those young states that they're capable of, and going to those places that they used to live, and reentering that space.

And by giving the right support, we know we can change lives. - [Heather] We do. - And so, that's where we fit together. Yeah, like peanut butter and jelly, are probably some other things other than not my favorite. - Some other keto thing. - Yeah, like peanut butter jelly's my favorite thing, you get the idea. - Yes. Teepa, thank you again. - You're so welcome. Thanks for the opportunity, and it is great to be with you. (gentle music)