Caregiver Strategies for Overcoming Communication and Behavior Changes Due to Dementia

Dementia care specialist Teepa Snow discusses techniques caregivers and family members can use to better communicate with Alzheimer’s disease and dementia patients. Guest: Teepa Snow, dementia care specialist, educator, founder of Positive Approach, LLC

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Transcript

Nathaniel Chin: Welcome to Dementia Matters, a podcast created by the Wisconsin Alzheimer's Disease Research Center. It's our goal to humanize Alzheimer's research so that our community, our patients, our participants at anyone else interested, can get a better understanding of the work that's happening to fight back against this disease. My name is Nathaniel Chin and I'm a geriatric and memory clinic physician at the University of Wisconsin. I'm also the family member of someone living with dementia. I'll be serving as your host for this podcast and asking the questions I believe on the minds of many in our community. Thanks for joining us.

Welcome to Dementia Matters. I'm very excited to welcome our guest today, nationally renowned dementia educator, Teepa Snow. Teepa Snow has worked as a registered and licensed occupational therapist for more than 30 years and has treated patients in just about every setting where you might find geriatric and dementia patients, including longterm care facilities, day programming sites, home care settings, and assisted living communities. Today, through her company, Positive Approach LLC, Teepa Snow tours the country teaching her caregiver techniques and strategies with care partners. She's an advocate for people living with dementia and helps families and caregivers better understand what people with dementia experience. Teepa, thank you for joining us. Many of our listeners might not understand what an occupational therapist does or how they might help a person with Alzheimer's disease. How did your career in occupational therapy lead you to assisting dementia patients and their caregivers?

Teepa Snow: Well, it's interesting. I sort of specialized in brain changes and dementia and I've worked in basically about every type of setting you can work in from home care to hospital to trauma unit, to VA Medical Center to hospice care, longterm care, rehab. So I've had a lot of different experiences which I think sort of gets it to come together as an OT, and we're all about function. How do you do what you want to do? How do you do what you need to do?

Chin: And that's exactly what we talk to our patients about in clinic and it's such a needed specialty and you've had such a broad experience, which is why we are so thankful to have you on the show. And you know, many of my families want to help their loved ones with dementia safely stay at home as long as possible with that special emphasis on safely. So once your families get a home safety evaluation by an occupational therapist?

Snow: Well one of the first things I'm going to say is, here's the reality of living. There's always a balance between independence and safety and with older adults. One of the realities is I've been independent a long time and all of a sudden you're like acting like I don't know how to be safe. And for people living with dementia, that can be a real challenge because it feels like you're trying to limit my life and make it really difficult. So if you can find an occupational therapist who gets dementia and can be a friend and someone who provides options, rather than somebody who's going to tell you, get the rugs up and do this and do that for a partnership, then things go a lot better and it works best to do it before you think you need it. So we don't have our first accident and find out, uh oh. Boy, she was trying to get leaves out of the gutter. Um okay if I see evidence in the kitchen, she still has a little step stool and I'm doing work with her and go, ooh, her balance isn't great. Then we can talk about, you know, I wonder about that step. So. Oh yeah, I just pulled that out and use it and it's like, oh you do? Huh? I wonder if you might do better with one with a rail that you could hold on or something. Or maybe we, tell me the things you're trying to reach up there. I mean, but it's a, it's a conversation, not a diagnosis if you would. You know. It's that idea.

Chin: A partnership. That's a perfect way of looking at it. Well, what are some other strategies you use to help families and caregivers create that safe environment for someone with dementia?

Snow: Well, number one, it's looking at what the person is still able to do at best of times and also being aware of where they have those moments where at worst of times they are not able. And then combine that with how aware are they of their inabilities. So for people who don't have any awareness at all, of the lack of ability, I'm fine, I don't need any help. Why are you saying that? I know how to do that. Then that says, whoa, we better period a safety net, that's much more broad and has many more implications because there are things like they'll try to use either a car, equipment, devices, put something on the stove, walk away, so their safety awareness is really quite low in their self awareness is low. Whereas individuals who have an awareness, then we can use technology. Because technology could say, hey Teepa, you left something on the stove, and it's like, oh crap, I left something on the stove because I know I'm forgetful. I know I make mistakes. But there's a real difference there.

Chin: What other compensatory strategies, because that's what you're talking about, work best for people with memory and language problems?

Snow: With language, one of the best things for us is to learn a new way of communicating. So ask me a question, ask me what time your appointment is or something like that.

Chin: Okay. So what time is my appointment today?

Snow: You're wanting to know what time your appointment is with a doctor? Yeah.

Chin: Yeah.

Snow: It's at 2:00 today. Now what can you see that I'm doing that they can't see on radio?

Chin: You're showing me to 2 fingers.

Snow: I'm showing you two fingers and then I'll say now was there something you wanted to ask him or were we just going because it's time to go see him?

Chin: Uh, well I wanted to ask him something.

Snow: You wanted to ask him something. So is it something about something okay? Or is something not going right?

Chin: Something's not going right.

Snow: Something feels not right. Okay. So what do you notice I'm doing each time?

Chin: Well, you're meeting me where I'm at, my concerns and you're really guiding me down the path.

Snow: And I'm sort of tricky because the first thing I do is give you back what you told me.  So you get to hear what I heard you say and that allows your brain a little more time to think about what you said. And then when I say, now is it this or is it that. Or I give you a specific, then your brain can pick. It doesn't have to go hunt the information up, find the words, find the information and come back out. I gave you an either or. And the either or is a specific and then a global, or two categories. So instead of asking you would you like something to drink? I'd say it's about time for us to both have something to drink now would you rather have something hot or cold? And so that's a very different way of going about it.

Chin: Yeah.

Snow: So the support there, the compensatory strategy there is I change. Yeah.

Chin: And you also, you gesture to me, which our listeners can't see.

Snow: Yeah, lots of visual cuing because the visual system, when I get in the center piece of your visual system and I turned my body sideways a little bit. I present you with things that most people can pick up on even if you're not sure of whether I said coffee or tea, if I went "coffee or ice tea" even if you're missing the consonants, even if you're missing some of the specifics of speech because I'm giving them motion while I'm saying the words and I'm in your visual field, but I'm not right in your face. Your brain can take up that information in a more effective way.

Chin: Yeah, you really got through to me. Yeah, it made perfect sense. Okay. Well, you know, families are often asking me how long they should let their loved ones struggle with something. So be it finding a word or making coffee as you gestured before they intervene and help them. So what do you recommend to families and caregivers?

Snow: Well, it's not when you help, it's how you help as much as anything. So if you're standing there and it's just like, mom, do you want some help? I mean I do the whole breathing thing and I'm looking like a parent who's disappointed. That sort of sets the stage for it doesn't matter when you help. I'm either going to feel like an idiot or frustrated. So if you watch me start to do something and you notice I'm about to make a mistake, you could go, "oh, let me ask you something," because what I'm gonna do is pause the action. "Now, do you want to put coffee grounds in the filter before you put it in the coffee maker or were you going to do something else?"

Chin: Okay. Yeah, you're right. Because that wouldn't make a person feel badly.

Snow: No, it's just like I'm asking a question so I make sure there's a question mark at the end of my tone because people living with dementia are actually quite good at picking up on the rhythm of speech, including the rhythm of a question, but they also pick up on things like frequency and intensity and volume so, if I go, "no, no, no, no. What are you doing, mom? Sheesh, you have to have coffee grounds." I mean, that's a way of helping that people unfortunately frequently get into without realizing it because I make a mistake and that's when your brain goes, "well, I've got to do something." But I treat it as an emergency rather than an awareness from the start of the task you have a high probability of having problems with initiation, sequencing, termination. How do you know when you're done. And then what do I do next? And so that statement of what do I do now or I stand in front of a trash can and say, well, how do I the trash out? And it's just, well, you pick up the bag and take it out. How do you think you take it out? But to pause, take a deep breath. You're wanting to know how to take the trash out. The thing where I said you repeat it also gives you a chance to pause and realize she doesn't know how to take the trash out. She doesn't know the first step. So let me give her the first step and see if that triggers the sequence. Or not.

Chin: Yeah. Well, what do you think of visual compensatory strategies, like sticky notes, the whiteboard, the big calendar that some patients and families will have.

Snow: Yeah, so those kind of compensatory strategies have a place and time. I believe we need to start talking about what people have left and how they shine and how we support them in what kind of care we provide. So the place where that works is when people still get language when I read the word socks and I can realize what's going to be in that drawer. So when I'm looking for socks, I see the word socks or if you draw me a picture of a sock, I'll recognize a picture of a sock with the thing that I'm looking for to put on my feet. And then I hold onto that long enough to sort through all the sticky notes you have on things. And I have enough of the visual field regard and enough of an ability to scan in an organized fashion that I'm going to be able to find the place. So, frequently technology doesn't work the way people want and visual cues, if you're asking me to do more than I have capacity for. We've got to pay attention to when it's not working, when I'm standing in front of those drawers and going well, which one has the socks in it and it has the picture and it has the word and I'm still not getting it. Then it's time to take all those stickers off and just put the pair of socks out. I'll see those. That's the new visual cue. And I say, here you go, mom. And I don't say, do you know where your socks are? I just say, there you go.

Chin: What are some alarming behaviors or habits that might signal a person with dementia should not be living at home independently or even with the spouse or family member?

Snow: Some of the key things, are we know people are at high risk when there's a pattern developing that indicates an unawareness of environmental risk. So for instance, if I'm starting to have patterns of using equipment and I've got enough skill to turn things on and I don't have enough knowledge how to get them back off, I'm losing my sequencing to such an extent that I'm standing in the shower and I think the water's too hot, but I no longer know how to turn the temperature down in a consistent pattern. And so I just stand there and go, it's hot, it's hot, it's too hot. Then there's no way I should be left alone with a water temperature. Now you could of course adjust so that it can't go too high, but then I could be standing in there too cold. So you know, it's that you're looking for patterns and the patterns are ones that if I make that kind of mistake, how soon will someone come and be available to me? Or how soon can we correct that? And if it feels life threatening, then I'd say you're probably in a red light district. And the problem is most folks wait too long to start the process. Instead, when they see a yellow light slow down and start looking, people think it's green and all of a sudden it turns red and it's like, well, that's not how it works.

Chin: Can you provide a few strategies family members and caregivers can use to prevent escalation of challenging behaviors?

Snow: So challenging behaviors, I call them challenging situations because there's almost always at least two of us involved in it. And one of the things to do is to recognize one of us is being threatened in some form or fashion. So I'm trying to get your clothes off and you don't think you should take them off. I'm trying to change you because you're incontinent and you think you're fine. I'm trying to get you in the shower. You're trying to get out of the house because you think this isn't your home and you've got to go home. You're trying to do something on the stove and I'm trying to get you to not. So we usually have something where the two of us are doing a tug of war or pushing it each other. So the first thing to do is to stop pushing. That's step number one, the one of us with greater capacity has to stop and make a statement that sounds like I'm going to get what you're saying. So if you're saying "I don't want to take my clothes off," "you don't want your clothes off, you don't see why I'm doing this. It seems stupid to you." And as soon as I knowledge with that level of intensity that you're telling me, then usually what people do is go, "yeah," and then all of a sudden we're in a different place because I acknowledged where you were and I say, you don't see any point to this. I'm trying to help you get cleaned up, but you think you're fine. "Yeah, I'm sorry. I was trying to help tell you what. How about if you do your pants and I don't do that," and now all of a sudden we have a different direction to go, but until I'm willing to stop pushing and making it worse and acknowledging how upset you are. So if you say, "I gotta get outta here, I need to go home." "You need to get home," instead of saying, "Mom, you are home. This is where you live. You've lived here for 14 years," that's just going to make it worse because what I'm trying to get your brain to see is what it can't see. So that strategy of going, "Okay, so you're needing to get home now, do you need to do something there? You just want to be there. You need to do something there. Tell me about it. So you're needing to get home and do something. Is it something that needs to be done right now or you just don't like being here?" I'm trying to explore. What is it about this thing that's making you so distressed and the part of the brain that I think we underestimate the power of is an Amygdala. Amygdalas are incredible things, you know, and they're trying so hard to keep me in a place where I feel okay and when you're threatening me, I don't feel okay. I'm either fright, flight, fight and then I've added two ideas for people. I hide things or I seek help. I hide or I seek. So hiding and seeking. I hide evidence. I'm afraid if you find out you'll take away control. I'm afraid if people know so this with dementia, there's a lot of hiding and there's also a lot of seeking. Seeking a way out of this, seeking a cure, seeking another, "There's gotta be. There's gotta be something," and it's like, yeah, I wish there was something.

Chin: Because you talking more than just redirecting, reframing. You are exploring. You are meeting them not only where they are but living in their world.

Snow: I've got to come to where they are because they can't come to where I am. Yeah. I've got to figure out where exactly are they and see it from their point of view. Hear it from theirs. See it from theirs. They're missing a cue. I mean if I know they're drenched and they have feces on him and they don't think they need changed. Something is really funky.

Chin: Now, while preventing is always preferred, hurt, feelings, arguments, even physical altercations, are not always avoidable. What can family members and caregivers do to diffuse a situation if a loved one is verbally or physically agitated?

Snow: So if somebody really up the chain. I mean, so their Amygdala is gone to the danger zone, they feel endangered. "You don't tell me what to do, you shut up!" Then I want to go, "I need to shut up," so my voice comes in at the level of intensity, but I turned my body so we are literally matching and we're now both angry about this situation. And I say, "You hate it when I do this. It makes you so angry. I am so sorry. I was trying to help. I didn't mean to make you angry."

Chin: That's very disarming and you're on my side.

Snow: Who's in control now? So as soon as you feel that locus of control shift and you start to feel back in control, you don't need to grab control. You don't need to hit me. You don't need to fight your way out. And that's the biggest mistake people make, is they try to control that individual who's already feeling totally out of control and that nobody gets it. And as soon as I move into alignment physically and emotionally and spiritually, I help that person feel back in control. And I apologize, I never meant this and I truly didn't. And if you can't do it with authenticity, then don't try to fake it because they'll pick up on it. But I truly never met that harm. I was only trying to help. And there's real difference between "I'm trying to help mom!" and "I'm so sorry I was trying to help," because mom gets to be mom again.

Chin: Well you've offered such a unique and needed perspective and I want to thank you again for coming on our podcast.

Snow: You are so welcome. It was a pleasure to be with you.

Credits: Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the geriatric research education and clinical center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode was produced by Rebecca Wasieleski and recorded and edited by Alex Wehrli. Our musical jingle is "Cases to Rest," by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.