This is FOXcast PT. A podcast for clinicians made by clinicians. It’s brought to you by FOX rehabilitation. Find out more at FOXRehab.org.
Jimmy McKay, PT, DPT: Welcome to FOXcast. My name is Jimmy McKay on the program today very excited to bring in today’s guest Teepa Snow. Teepa welcome to the program.
Teepa Snow, MS, OTR/L, FAOTA: Thanks for having me.
Jimmy: Teepa when people ask what what you do how do you respond?
Teepa: Yeah. So I’m an occupational therapist but for about 40 years I have been working with people in various states of brain change. Most recently for the last 20-25 people who live with dementia. So what I do is I help train people who are trying to figure out how to do this. I work with people who live with dementia. I work with professionals and family members and medical providers and organizations and associations and I do speaking and I do training and coaching because it’s tough. It’s a really difficult brain change to deal with.
Jimmy: Absolutely. And I love how you highlight you’re not working with just the individual with dementia you highlighted all those people.
Teepa: Yeah because when one person gets dementia everyone around them is going to be living with it one way or another. And if we don’t reach out and support the entire team what we end up with is one person having issues and everybody struggles. And it’s like well let’s figure out who’s having the issue this time and let’s figure out what to do to support them because it’s going to be a journey.
Jimmy: And if one member of that team starts to take on too much of that burden not just that person is going to suffer but also the individual dementia is going to suffer. So let’s start with the real big so broad scope of the macro view what is dementia exactly how do we better understand it?
Teepa: So we have normal aging and that means my brain is slowing down my reactions are slowing down it takes me longer it’s harder to think things through a little bit more before I make a decision. I’m learning to compensate but I’m having to compensate. Dementia means that’s not what’s happening. My brain is actually starting to die on me. And where it’s dying first and how it spreads through my brain is sort of what kind of dementia. But it literally means at least two parts of my brain are actively dying. So it’s not like they got damaged like in a stroke or maybe I had a fall and I hurt my head or I had a head injury. This isn’t a static stable state it’s progressive. So the second thing that’s true is it keeps changing. It’s getting more. It’s spreading. And the third thing that’s going to be true about all forms of this condition called a dementia is that there’s nothing we currently know that will cure it or stop it or turn it back around. So once you have dementia it’s like if you had a little dementia you’re like a little pregnant. It’s like yeah but that doesn’t actually turn out to be like that. You are you aren’t once you start on that journey we don’t have a way to stop it. And it is actually the fifth leading cause of death for people over the age of 65. So it’s not a minor condition. So it’s life changing but it could take eight to 12 years or longer for it to go from first symptoms that we see and notice to end of life issues.
Jimmy: I think you frame that really really well. When you’re explaining it to caregivers and the rest of that team including the individual with dementia likely they’ve they’ve already gone online to Dr. Google and they’ve seen some of that information. How do you approach that explanation of you know I love how you put it not really a little bit pregnant. How do you explain that there’s still things that you can do even though you know we’re not going to cure dementia.
Teepa: Right. So one of my very first question is for each person each individual separately is tell me what you know about what’s going on now. Tell me about the dementia as you see it. Tell me what’s working. Two things that are working well and one that is not. Because I want people to pay attention to what still works and the way to do that is tell me two things that seems to still be working pretty well. And what’s one that’s really getting in the way that’s causing you some trouble. And let’s start with what our strengths to support what are changes or weaknesses or challenges. And I’ll do that with each partner and then start to pull people together and go OK we’re on real different pages here or huh. We have a similar issue. Your mom thinks you’re being too bossy. You think she’s being too stubborn. Brother thinks you’re making something out of nothing but the challen is everybody’s seeing dementia a little differently. It’s that way of sorting through who is involved to see if we can come to some common agreement. So your mom doesn’t say that she doesn’t want some support but she wants it on her terms and that’s really not matching how you have to give care so. Huh. Wonder if we need to get a another party in here to do some support so that you two aren’t going at each other every time you try to offer support.
Jimmy: That sounds like all getting on the same page to me.
Teepa: And there’s a lot of getting on the same page and realizing sometimes if the person living with dementia doesn’t get it I can’t fix them. I can’t make their brain be able to realize they don’t have competence in that area anymore. So we’ve got a structure the environmental support so that you know there’s less opportunity for them to get the car keys. And how do we do that in a way that doesn’t seem punitive and doesn’t seem like I’m trying to control everything. Well that takes a lot of practice to get good at it.
Jimmy: It sounds like you’re doing a lot more listening than instructing and that’s where you’re going to get the good the good information of where we are that’s a great way to evaluate.
Teepa: If I miss my cues and I get off on a tangent and I’m not in the right place. I’m not supporting anybody I’m off doing something that’s not helpful. And so shaking my finger or telling people this is what you ought to do without clearly understanding what they’ve already tried. Tell me what you’ve already tried. Who is their authority figure? If you had to name one person they listen to who is because that’s who we want to use when we have some tough messages. We want somebody to stand beside them and say wow I hate that I hate that for you. This is really hard. They’re telling you not to drive. Well hey Doc is this forever. Well no it’s for right now. And we’ve got to cue up the doc to say it’s for right now for right now I don’t want you driving. Because if you say forever well we got a lot of people in our lives that are going to fight tooth and nail because I’m not doing forever.
Jimmy: Yeah. It sounds like just getting everybody’s belief and knowledge about this person’s dementia in the giving team on the same page. Like you said.
Teepa: Yeah for right now for right now because if you take away hope of ever what’s point at that’s not support that’s oppression. That’s you’re going to take my life away from me and it’s like well that’s not the goal. So for right now though because they’re working on meds because we’re doing a lot of changes I’m going to ask you for a big favor for right now. I’m gonna ask you to let me drive for right now and I know that’s hard.
Jimmy: Yeah you’re seeing it four or five times. This is this is me talking to the audience than that is a big big takeaway point right there for right now. So it sounds like you led off this section of the show by really highlighting a positive approach and that’s what that’s what really the overarching topic was going be a positive approach to dementia care. We do want to let people know that’s where you can find out more is teepasnow.com the positive approach to care. How does the positive approach help those living with dementia specifically down the line. What are the things that you see working with people?
Teepa: So if I just asked you OK your deteriorating I say to you your deteriorating Jimmy and you know what you’re going to deteriorate and it’s going to get worse and worse and worse and ultimately there’ll be nothing I can do at all. I mean and you will die. How are you feeling right now.
Jimmy: Not that great.
Teepa: What if I say to you Wow you know you are doing well in some areas. You are having trouble with change though any kind of change is really hard for you. I’m wondering though if we could could I do one change if we keep everything else the same.
Jimmy: Sure.
Teepa: OK. Here’s the one change I want us to make. I want to put the meds in a container and I know that’s that’s different than what you’ve done before. Can we try it.
Jimmy: Yeah I mean one thing. It’s one thing. Sure I’ll try it.
Teepa: Yeah. You want to keep it in the living room or do you want it. Do you think it would work better if we put it in the kitchen.
Jimmy: The kitchen for me.
Teepa: OK so what I’m doing is I’m offering you choices but the choices are not can I do your medicines. Where do you want to put the medicine box. And then I need to plan on doing a contact to make sure you actually open it up because it’s something different and that’s gonna be hard. So I use what are called Gem states rather than talking about global deterioration because absolutely your brain is dying. But since I can’t fix it what I have is I can help you work with what you got left. And I can support what’s missing. So it’s support environment and cues.
Jimmy: So define gem when you say gem states was Gem stand for?
Teepa: Yeah. So I use Allan cognitive levels which is an OT background occupational therapy kind of thing. But it looks at what kind of cues Help you what kind of support helps you? What kind of characteristics do you have? What are you gonna be interested in? But rather than talking about a level one two three four five six you know a stage of dementia. I say you’re in a state of dementia I talk about diamonds and emeralds and ambers and rubies and pearls at the very end. So you’re trapped in a shell ruled by reflexes you can’t come out very much but you’re still beautiful in there but you’re totally different than how you were to initially be which. Was a sapphire or a diamond. But do you have beauty. Yes. With the right support can you have moments when you shine yes. Will you shine all the time? Absolutely not. But what can happen depends on what I choose to do and if I choose not to be supportive. Boy this is going to go really hard for both of us and I’ll scare you a lot because you can’t find your way out unless I’m supportive. So helping people move from one side of a bed to another side. That in enough. So it’s a real challenge because people can’t move actively move anymore at the end of the disease their muscles that pull them down and forward and in they won’t be able to eat they won’t be able to drink. The good news for us is they’re not actually hungry or thirsty. We’re the ones who are struggling with it.
Jimmy: I love that. That’s a great way to look at it. More information. I want people to check this out. A lot of information. I mean a lot of resources downloadable free interactive on the Web site TeepaSnow.com. You must have some great interactions that did just tell me about when people come and either you know come to a course of yours then take what you have kind of taught them and when you report back that’s gonna be really fulfilling to hear back.
Teepa: It’s amazing. I have been doing national and international work for about 25 years actively. And I have people who come up to me at a talk and they’ll say I saw you 20 years ago and it changed my relationship with my dad. I have people who say I finally could say I can let go of the frustration I felt about taking care of my mom. I did do a good job. I did some things wrong but I did a lot of things right. And now I understand why she did what she did was she couldn’t talk anymore but she could sing and even I got really annoyed with her I would sing along with her and it’s like oh that was a blessing and that was Joy. Boy am I glad I had that moment. It’s amazing professionals and family members when they try it out and they see it work they’re like it works and it’s always so fun when they go Oh I try to do it work if it’s like good to hear. Tell me more about it.
Jimmy: Love and I love the line on your Web site until there’s a cure. There’s care. And that’s really what you’re you’re focused on. And I do want to highlight. Now you’re you’re literally getting people together you’ve got your inaugural conference coming up. November 17th that’s going to turn up in and Cary North Carolina. I’m in the northeast so North Carolina isn’t a bad place to be in it in November.
Jimmy: It is not a bad place. I could tell you the Northeast isn’t that much fun to be in in November. I’ve done that.
Jimmy: So talk a little bit about what what goes on there. You know originally when I looked at this I just assumed this was for clinicians but is this for ? OK. Explain that.
Teepa: Absolutely. It is for family members it is for people who are actually living with dementia. We have a track for them with people who know how to be supportive because we train people to be supportive and people can come and enjoy and be part of and participate in and give voice to and be present for this whole conference. Professionals come people who we have an our community that live with dementia have volunteered to work with people who don’t get that many chances to be with people that have different dimensions. Like Lewy body or frontal temporal lobe dementias or vascular dementia. In addition to Alzheimer’s so people are bringing themselves to the conference because we in our community we believe you know it’s when we come together and I will be there doing training, skill building and so will our mentors. We have mentors from all over the U.S. and Canada and the UK. And we’ll be coming together and people are out doing things are going to come and share what’s happening for them the ways and facilities and mental health facilities from across the U.S. and across Canada.
Jimmy: That is fun. If that’s not education from a therapist to the people who it matters most the clinicians and the family members. I don’t know what is. So we wanted to highlight that again that’s a November 17th is the the gems stage show. Check out the information. TeepaSnow.com and check out that inaugural conference. Good luck for you. Good luck on that and get a good free effort for giving that a shot because that’s that’s an undertaking I can imagine.
Teepa: It is an undertaking but we’ve built a community that wants to come together and we said All right well let’s do it.
Jimmy: That’s perfect. You got a second for some questions from the audience. Sure. All right. Asked some people online via our Facebook channels. Check it out online at FoxRehab on Instagram Facebook and Twitter. Question from an occupational therapist first what are the top things we should not do when working with clients with memory impairment that we do too often maybe one of the things that you see coming up that we should avoid doing?
Teepa: So one of them is waho waho waho waho what are you doing? No no no no no no. So that negative talking that startled sort of when they start to do something that surprises you instead of going well no. Oh jeez no no no no no you’re going to fall. You know that sort of mom talk that shows that your brain got startled. What you want to do is Oh hey Jimmy because Oh hey Jimmy is an interjection that will cause Jimmy to pause for a second.
Jimmy: I’ll be I’ll be honest with you when you started. No no no no no no. I actually got nervous on this end of the microphone because I was like what what just happened did I not ask the right question what happened? But you’re absolutely right. It startled me.
Teepa: Yeah. And so if you have dementia you don’t have a recovery. And now the very next thing I ask you to do there is no way you’re doing it man you’re just like I don’t even know what you just said but I’m in trouble and I don’t like it. Whereas if I go Oh hey Jimmy! You all spontaneously pause to see what I want. So without saying stop don’t I got you to stop and pay attention to me.
Jimmy: Well you used my name too which is you the thing probably the word we’ve all heard the most is our own names.
Teepa: The power of a first name of a preferred name and whatever that preferred name is for that human being really important. A second one is how many instructions you give at a time because therapists are notorious for like OK so what we’re going to do I’m gonna take you down the therapy room. And so then we’ll work on your upper body just a little bit. I’m going to have you lean forward and get up and come on with me. OK. Yep. So can you stand up and we get verbal diarrhea is what I call it. So the goal is to go whoa pause. You know what. Hey Jimmy and I show you my outstretched hands but I’m about 15 inches maybe away from you and I’m turned a little to the side and I say oh can you come here. And I give you a big hand motion come toward me. And if I’m trying to get you to initiate any kind of movement I just got to forward in the chair and on the balls of your feet. So you’re alert you’re aroused you’re paying attention. And then I could even come in and sit next to you or we could get up and go do something. But it’s one step at a time and there’s a lot more visual queuing with a lot less verbal information.
Jimmy: I’m completely guilty when I was a new therapist just out of school. Absolutely guilty of everything you did there. And I just I remember thinking when I watch really people who I consider really great therapists working with patients being amazed they look like they’re barely doing anything but getting a lot out of it. And so I guess students and myself included very very guilty of this. It’s good to be conscious of that as well and functional tells.
Teepa: Don’t you to remember remember remember we were working on this there. OK. So Jimmy do you remember what we did last time. Do you remember how I had you. The famous word you would think when we work with people living with dementia. We would leave it alone. But it’s one if you if you ever audiotape yourself you’ll be amazed unless you’re very thoughtful about it. That that word does not occur.
Jimmy: That’s important but it’s so easy. I mean we just we we say without thinking. That’s the point now and should be thinking.
Teepa: Now remember you’re not supposed to bend forward and forget the not statements or the don’t statements because if people early in the disease can lose as many as one out of four words what’s the difference between go out the door and don’t go out the door.
Jimmy: Yeah that’s a good point. And this way remember it’s the positive approach right. That’s not going to be talking about the positive approach. I’m falling in line here I’m picking up which putting down next question This one’s from an SLP functional tasks for those with dementia and other neuro diagnoses. How can we push for dignified functional tasks that are at the appropriate level. I know you have like activity boxes were mentioned as well.
Teepa: Yeah. Yeah. We have a lot of things and it’s it’s geared for what abilities and interests the person has. So if they’ve been in the kitchen a good bit then what I might have them do is pick up cans and put them up on the shelf for me or take them and put them in the bag for me. So I create a situation where they have the opportunity to engage in perhaps a repetitive task but one that uses what they have left. So if all they have is gross grasp left then what I’m going to work on is standing balanced with gross grasp. But the way I’ll do it is have them put their non dominant hand on a on a countertop and then hand up a can and point to the shelf I want it on. And I start with eye level and then I start moving it up or moving it down because I’m working on standing balance while we’re performing activities. But I have to keep the motor tasks simple so that they aren’t overwhelmed by the balancing and the motor tasks and they can be successful. And at the end I go oh my gosh thank you You were fantastic. That’s wonderful. Then I might try another object but I’m going to start with simple and make sure they’re successful before I ramp it up a notch.
Jimmy: Making it functional and and keeping it within focus on what they are still able to do. Teepa last thing we do on the show is your FOXtale. Why did you decide to work and focus your career on individuals with dementia?
Teepa: Well it was a combination of Ms Jackson who is an amazing lady that taught me a lot about communication. When she told me at some point when I was 18 that she needed me to carry her to see Mr Dukes and I didn’t understand her and she babbles slapped me. I learned a Bible slap likely slap you when you have the Holy Bible in your hand and it’s leather and it’s got embossed on it Holy Bible and a little 18 year old gets in front of you and says Now Miss Jackson we don’t talk like that and I need you to get back in here and let me help you. And Ms Jackson who was a small Southern African-American woman who she got real mad at me and she swore at me and then she hit me with her Bible. And I had a raised welt on my face from where she slapped because I was right there blocking her in later that day. I mean she got haloperidol which is what we used back then on everybody with dementia who misbehaved. Because we thought it was them didn’t realize it was us. The next day I came in to work with Miss Jackson and she had been sent to the hospital and it turns out she had shingles to do a duoderms all the way around she was in horrendous pain apparently but I hadn’t realized that. And so when she told me to carry her to see Mr Dukes. In the northern part of North Carolina rural area she was actually asking me will you take me to Duke University Medical Center I think I’m really sick. But I didn’t have the language skills that I needed to interpret her language. And so two weeks later I finally came to the realization I was the one that missed the message not the other way around. So Miss Jackson is one of my very very strong mentors along with Gladice who was somebody I was helping back in the day eat and I had a hard time letting go and she said Honey I know I’m gonna die. I need you to be okay. And it was like okay miss Gladice I hear you. So sometimes it’s the people we care for that help us learn to care. And those are two of my mentors. They were really special ladies both with really advanced dementia but really amazing women.
Jimmy: Man that’s a couple of good stories thank thank you for sharing those those are great huh. Appreciate you taking a few minutes of your time here. I know I learned a lot and just listening and hearing your stories and your approach so I know the audience it is did as well. We want to make sure people can find out more again TeepaSnow.com and that conference is coming up in just a few months if you’re in the area it’d be pretty cool. Can’t wait to hear more about that we’d love to talk to you again after that and hear more about it.
Teepa: Absolutely I’d love to talk to you again Jimmy as well. Thanks for doing this and reaching out to people.
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