Dementia: A Positive Approach to Care with Teepa Snow

What do you need to know about dementia? 

 
Join Kelly and her guest, Teepa Snow, Owner and Founder of Positive Approach, occupational therapist, and dementia specialist. Teepa is a wealth of knowledge and recently she’s been a dementia specialist to Bruce Willis’ family.

In this episode:

🔹 What is dementia? 

🔹 What parts of the brain are typically impaired with dementia? What do people living with dementia typically lose and keep?

🔹 What are the 4 truths of dementia and how long do people typically live with dementia?

🔹 Is there anything people can do to reduce risk for dementia?

🔹 What is Teepa’s Positive Approach to Care? How can people best support a person living with dementia?

🔹 What are cues that you might have signs of dementia?

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Steadfast Care Planning podcast is made possible by AMADA Senior Care and Steadfast Insurance LLC.

Come back next time for more helpful guidance!

Transcript

Kelly Augspurger: [00:00:02] Hey everyone. Welcome to Steadfast Care Planning, where we plan for care to live well. I'm your guide, Kelly Augspurger. Today with me is Teepa Snow, Owner and Founder of Positive Approach, occupational therapist with over 40 years of experience and a Dementia Specialist. Teepa, thanks so much for being here.

Teepa Snow: [00:00:20] Oh, thanks, Kelly, for having me.

Kelly Augspurger: [00:00:22] Teepa is a wealth of knowledge everyone. She recently has been a dementia specialist to Bruce Willis' family, which I find so fascinating and today we're talking about dementia and what we can do to help people who are living with dementia and their caregivers. So Teepa, can we jump right in? 

Teepa Snow: [00:00:40] Go for it.

Kelly Augspurger: [00:00:40] Alright. Well, first off, what is dementia and what's included under the umbrella of dementia? 

Teepa Snow: [00:00:47] Ok so dementia is atypical aging that has a certain profile. So typically dementia happens after we mature, which means we're adults, not always because they're also juvenile dementias that can develop mostly due to genetic conditions. However, for adults, what it means is you have abilities and you're losing abilities. So it's neurodegeneration. Your nerve cells in your brain are dying or shrinking and dying, and the chemistry changes first and then more. So the definition of dementia: You have to have at least two parts of your brain, two areas functions in your brain that are dying. So they're not just sick. They're not just damaged, like after a stroke, you actually have to have active cell death going on and it's progressive. So it keeps happening and we currently don't have a way to turn it around and stop it or fix it or keep it from happening. So the other thing that's true about it is it's terminal, so we don't have a stop point at it, except the person will ultimately, if nothing else, causes their death, they would die due to their dementia, but until then, they're alive.

Kelly Augspurger: [00:01:59] Okay. So really it's in the brain. Obviously they're slowing down, probably not processing as quickly, do you see that then affecting their physical limits of what they're able to do? 

Teepa Snow: [00:02:14] Yeah so what happens as the disease progresses, depending on the dementia and there's a whole wide range of them as it gets to where the skilled abilities are, the first abilities that start disappearing like the difference between being able to button or unbutton buttons versus just to take your shirt off. So I lose my skilled sign of abilities first, but one of the most skilled things we do actually is swallow safely. So swallow liquids, swallow food, chew and swallow, breathe, because we have to work breathing into that. We have to fight infections. We have to be able to recognize, the brain has to recognize, an intruder and then fight an infection and get rid of it. And so what starts to happen as the disease progresses is I can't fight infections very well and my brain doesn't even know I have an infection. I can't work against gravity very well because that requires a lot of skill. So falls are very common; injuries from falls. I can't take in your information about what you're saying because I can't take in the skill of language or produce it. I can't take care of myself. So the really important part of dementia is that it will rob me of my independence over time. It does steal my independence, so that means that people around me are going to be confronted with the opportunity to support me in some form or fashion, and the bad news I may or may not realize I need that level of assistance.

Kelly Augspurger: [00:03:39] So what parts of the brain are typically impaired with dementia? Are there some parts of the brain that are not affected at all typically or does it just depend person to person? 

Teepa Snow: [00:03:48] Well here’s the really hard part of this is ultimately dementia will destroy or impact and take at least one third of pretty much your entire brain structure, with the exception of your ability to hear sound. For some reason, dementia doesn't tend to affect your ability to hear sound. However, it does keep you from putting the sounds from the two sides together to know where the sound is coming from. So I can hear sound, but I don't know what's causing it. I don't know why it's happening. I don't know where it's coming from. I can't tell the difference between something really close and something far away. So I don't know whether I should be interested in what I'm hearing or overwhelmed by it. So it can cause its own set of issues, but I do hear well if I didn't have a hearing problem before my dementia. 
 
 

Kelly Augspurger: [00:04:35] That’s fascinating. I didn’t know that about dementia. It doesn't affect the hearing. So what are the four truths of dementia that you talk about and how long do people typically live with dementia?

Teepa Snow: [00:04:44] Yeah. So the lifespan of somebody living with dementia is highly variable. Six months to 30 years.

Kelly Augspurger: [00:04:50] Big range, big range.

Teepa Snow: [00:04:52] I had a feeling you'd say that, Kelly. Now with certain dementias, we're more looking at like 8 to 20 years as a ballpark. and for some dememtias, it's even tighter than that, like 8 to 10 is pretty common. But I mean as short as six months and as long as 30 years with certain dementias. The four things that are true is the brain and the abilities are going to be changing over time. And the second thing that's true is it's never going to stabilize. So you may think, “Okay, I've got this, I can handle this, this is where they are.” And then, you know, it changes and it's just like, ”But wait, wait, she was doing this yesterday or she did this earlier today.” But you can't count on it because brains are both chemical and structural, electrical, and chemical, and they're ruled by hormones and structure. I mean, it's really complicated. And the final thing that I think is always true with all dementias is that it's how those around decide to get the support they need to be supportive. That makes a big difference because this is an easy condition to be overwhelmed by.

Kelly Augspurger: [00:06:01] Absolutely and that's why I do this show, Teepa, to provide resources, encouragement, things that we can do as caregivers, as family, as professionals, to be able to come alongside those people who have dementia or whatever the case may be to improve quality of life. So I did hear you say it's terminal. We do know it's progressive as well. Is there anything at all that you know of that people can do to prevent dementia or at least slow it down.

Teepa Snow: [00:06:30] Rather than prevent, we’re going to talk about reduce your risk.  
 
 

Kelly Augspurger: [00:06:33] Ok.

Teepa Snow: [00:06:33] So there are things we can do that are risk reducing strategies. And they they amount to about five things that if we do these things, there's a high probability that we're going to reduce our risk substantially. So one of them is get good quality sleep. 

Kelly Augspurger: [00:06:49] Ok.

Teepa Snow: [00:06:49] We need to get sleep because sleep is when your brain recovers and your brain gets rid of toxins and your brain sort of resets itself for another day of activity. It's really, really important to have good quality sleep. The second is, if you're living with a lot of distress, like you find yourself in distress a lot, that means you're putting out a lot of cortisol. And cortisol is a really negative stress hormone that actually lays fat, puts fat into parts of you that is hard to get rid of, and it also stresses systems. So getting to a place where a little bit of stress in our lives is actually good for us. We don't want to be so comfortable that become couch potatoes, but we don't want to be so distressed that we can't think. 

Kelly Augspurger: [00:07:36] Right.

Teepa Snow: [00:07:36] So dealing with stressful situations in productive ways.

Kelly Augspurger: [00:07:40] Okay.

Teepa Snow: [00:07:41] The third is to have social connections with people you like on a regular basis.

Kelly Augspurger: [00:07:45] People you like. I like that part.  
 
 

Teepa Snow: [00:07:48] That’s critical.

Kelly Augspurger: [00:07:48]  
 That is not just social interaction, but people you like.

Teepa Snow: [00:07:51] Don't keep going with people that irritate you. Right?

Kelly Augspurger: [00:07:54] Right because then you're going to be in more distress, right? 

Teepa Snow: [00:07:57] Yeah and so, you know, whoever you're spending time with isn't your favorite person, get with somebody you do like to spend time with. At least in the evidence, is at least once a week. It's a significant risk reducer. And then the next one is be physically active and cognitively stimulated at least daily. Do something that stimulates and get your cardiac up above your baseline by 70% and keep it there for a half hour. So go out and walk. Go out and swim, go out in you know, just do something that gets your cardiac system pumping the blood through you effectively because it actually does affect your brain because your brain's the highest point in the system and you've got to get enough going on so that it's getting that and you want to get your brain excited about things because you want to build new synapses. It turns out humans who build new synapses are healthier and they do better than those who don't.

Kelly Augspurger: [00:08:52] Sure, that makes sense.

Teepa Snow: [00:08:53] Yeah and do something that's fun for your brain. Don't do stuff that stresses you out.

Kelly Augspurger: [00:08:57] Yeah. 

Teepa Snow: [00:08:58] So if you don't like doing something, don't keep doing that, but do different things because if you've always done crossword puzzles, the bad news is even if you do a crossword puzzle, you're not using very much brain activity.

Kelly Augspurger: [00:09:08] Because it's not challenging. Yeah, challenge yourself.

Teepa Snow: [00:09:12] And the last one is what we put in does matter. Eating well, breathing well. So looking at doing good breathing during the day and being on an oxygen supply out there, that's good. So being outdoors every day turns out to be a risk reducer being in nature, but also eating a mediterranean or what's called a Mayan diet can make a difference. Like look at what we're putting in and how much, right?

Kelly Augspurger: [00:09:36] So would that be a lot of vegetables? Would that be fish?  
 
 

Teepa Snow: [00:09:41] Yeah, lots of fish omce or twice a week for sure. Take down the amount of animal protein and fat and enough of that. Get rid of some of the crappy stuff that we love to go and like grab and throw in. Glucose - we want to reduce or manage our glucose carefully, look at cholesterol, but those things can make a difference. Now the tricky part, though, Kelly, is once somebody has dementia, we don't want to become the wicked witch of the West and say, “Oh, you can't have that. That's not good for you.” And it's like we've got to figure out how to make it still feel comfortable because guess who's going to get totally stressed out if we keep trying to be the boss of everything.

Kelly Augspurger: [00:10:17] The person with living with dementia and the caregiver both.

Teepa Snow: [00:10:20] Yeah.

Kelly Augspurger: [00:10:21]  
 Yeah.

Teepa Snow: [00:10:21] And so we just violated all the rules about, wait a minute, that's not very friendly. So, you know, yes, we want to try to maintain those things, but not at the cost of the relationship. And I think for caregivers that's important.

Kelly Augspurger: [00:10:33] Oh yeah, those are great practical tips and nothing that I haven't heard of before, but I think probably in conjunction, together, I mean these are both just for good health in general, right? But your brain is so important in your overall health that you want to feed it and feed it well. So yeah, great, great practical tips.

Teepa Snow: [00:10:53] Yes. And use it.

Kelly Augspurger: [00:10:55] And now for a brief message from our show sponsor. The Steadfast Care Planning podcast is sponsored by the CLTC, Certified in Long Term Care Training Program, which gives financial advisors tools to discuss extended care planning with their clients. Look for the CLTC designation when choosing an advisor.

Teepa Snow: [00:11:13] When it comes to dementia, the thing that we want to do is use it until you lose it. We don't want anybody to give up doing things prematurely because that actually causes a faster loss of abilities. So it is important to keep people engaged and active and enjoying things, but not pushing them to the wall or pushing them to their limits because we have that same negative thing that can happen. So it's a balancing act, and not everybody who gets called to do this as a family member or a friend or somebody who's concerned is skilled. And we have to recognize maybe I should learn more about this before I try to take it on.

Kelly Augspurger: [00:11:53] Absolutely. Reach out to professionals like Teepa in order to get some good approaches and practical tips on how do I manage this in a way that's beneficial to the person living with dementia and myself as a caregiver? Because at the end of the day it's very stressful, but we want to reduce that stress as much as possible on everyone involved, and so Teepa that leads me to my next question, which is I know I've heard you say that when one person gets dementia, it doesn't just affect that one person. Everyone around them is going to be living with dementia one way or the other, right?

Teepa Snow: [00:12:26] Absolutely.

Kelly Augspurger: [00:12:27] What is your positive approach to care and how can people best support a person living with dementia?

Teepa Snow: [00:12:33] So one of the things that we want to do is look at ourself in the mirror when when we have somebody in our world that is developing dementia, whether it's me, if I'm looking at myself or I'm looking at the person that I want to support, I've got to look at myself first and go, “What am I good at? What do I struggle with already?” Because when I enter this relationship of support or learning to live with my dementia, knowing what my strengths are, knowing what I have skill at, knowing what I'm still able to do is going to be really important because that means that's what we want to sustain. Recognizing what I'm not good at, what I'm struggling with tells me where I might need some support and if I'm the carer, it could mean I need to get somebody else in here because when it comes to spending time with my mom, I mean, we've always had trouble trying to reach a place where we were liking each other when it comes to cooking or driving or managing the house. And if that's the case, I really am going to need support there, and I don't want to get into like a confrontational relationship, but at the same time, Mom's like, “Well, I'm fine. I don't need anybody.“ We've got to learn the art of saying, “Oh, so you're not feeling like you need somebody. I hear you. This is really hard to adjust. You know, Mom, here's what I'm wondering if at some point in the future, you do need somebody I want to have somebody in mind that you would be okay with. So while you're able I'd like us to have people come in, a couple different people come in and you let me know who might be a match for you because I want you to be comfortable with somebody if you needed someone and I have no idea who would make you okay and who would not.”

Kelly Augspurger: [00:14:13] Right! Oh, that's such a wonderful approach. Yeah. You're reframing that in a really a positive way. It's not confrontational. It's not putting them down. It's not saying ”You need this” and telling them what they have to do. You're inviting them in a really open, like loving way into this conversation and you want their input.

Teepa Snow: [00:14:33] Yeah, “I need to know what would work for you because you've made me your health care power of attorney and frankly, I don't know who would be a good match for you, and I'd like us to try it out for a week or so to see if you get tired of them or if you're okay with them.” Because what I know is if someone is starting to live with the changes that are going on, it will take them awhile to get used to somebody. It will take them a while to accept that this is where we're headed. And if I take baby bites and I encourage us to have like little progress and after a week, I say “So, you know, she's really liking this. How's it working for you?“ 

Kelly Augspurger: [00:15:12] Yeah.

Teepa Snow: [00:15:12] “Because, you know, you you went out a couple times. You did this, you did that. How did it feel? I mean, can we try it again for another week? Because, you know, you know, you might need it for longer than we thought and we don't know. Could you do me a big favor while you guys were out? Could you go by the grocery store? I have a list.” And now I'm starting to realize how can I add another person into our world so that it's going to help both of us because otherwise I could get overwhelmed by this.

Kelly Augspurger: [00:15:40] Oh, easily, yeah. The caregiver, if you are trying to be a full time caregiver to a person living with dementia or any kind of physical or cognitive impairment, your chances of needing care sooner than later is very high. So not only do we want to protect the life of the person living with dementia, but we want to protect you, the caregiver. Are you seeing, Teepa, when you're working with families, are most families hiring out and asking for maybe it's part time caregiving or maybe it's full time caregiving? What do you typically see? Do you see a combination of family and part time?

Teepa Snow: [00:16:17] I so wish families would start this sooner because often by the time they realize how deep they're in and they need help, the person who's living with dementia has gotten used to the family and they don't want the other person. So there are some families who recognize early on, you know, we've got to figure out how to build in extra help to start with, but many families are trying to conserve resources. And so they think,“Oh, you know, what I'll do is we'll wait until she's more impaired and then we'll bring people in.“ But the problem is by then, that person who's living with dementia frequently doesn't want the other people. They're really scared about them being there. They might even have a dementia like Lewy body or Vascular that makes it feel scary that somebody is entering my space and is present and don't know who they are or if I have frontal temporal, I might not be tolerant of somebody who's doing it differently than the way I like it done or, you know, by mid state Alzheimer's, I may not remember that I've agreed to have somebody and when it got to like this. So families, I really wish families were better at recognizing we're going to need help. Let's start early, bringing in other people. And instead, all too often they wait until they're stressed out completely or overwhelmed or frustrated or it's not working, and that’s when they're more interested. And so the sooner we can get the idea of build a team, keep it simple, keep it small, part time is great to start with, but start off introducing different people into the mix before we get too far along.

Kelly Augspurger: [00:17:54] Great point. I mean, what a key takeaway, Teepa. We want to be proactive. Let’s say you get that diagnosis, what do we do? You know, it's probably early on at that point, hopefully. And so or not, maybe maybe it's not early on.

Teepa Snow: [00:18:11] Only about 20% of folks will get early state diagnosis. Mid state diagnosis is 70% of people right at this moment in time. That's really problematic.

Kelly Augspurger: [00:18:21] Oh, my goodness. That is. So with those 70%, Teepa, how many of those are do you think are willing to then bring in an outside person outside of the family? Do you think it's small because they're so far along? Yeah.

Teepa Snow: [00:18:33] Yeah. And you know, and yet there's this sense of, “Well, why can't you do it? I just called you once and you want to say, No, Mom, you didn't call me once. You called me 17 times and I'm trying to get work done. And I told you I'll be over at noon.” And guess what I don't hear in my own voice.

Kelly Augspurger: [00:18:49] What's that?

Teepa Snow: [00:18:50] That level of distress that I can communicate to my mom?

Kelly Augspurger: [00:18:53] Oh, sure.

Teepa Snow: [00:18:54] And so what happens is I am so stressed out already because 17 phone calls at work in the morning and I've thought I mean, every time she calls, I answer. but then she can't remember what I said because the fact is she wants somebody with her. But now guess who it's going to be? Me. And it's like, I can't. And so, you know, early on, if we can get something going on, but in 70% of families, they don't even know what they're dealing with. They just think it's ”Well, you know, she's getting older. She's getting a little more paranoid about stuff. She you know, she's she's having a hard time, but that's just normal.” It’s like, oh, maybe we missed our cues. We missed some cues early.

Kelly Augspurger: [00:19:34] So what are those cues, Teepa? What should people look for. At this point I need to talk to the doctor. What are some signs people can look for?

Teepa Snow: [00:19:42] So some things that you might notice is a change in the ability to hold on to brand new or recent details. So we talk and then you find out we talk again and it's like we didn't have the conversation the first time. So it's repeats on recent stuff. Maybe it's the details got messed up. Maybe I come up and I say, “Well, you know, the doctor told me I was fine.“ And you're thinking, “Well, that's not true. That's what the doctor said.“ And you find yourself in disagreements or arguments or a misremembering. So what happens is that that I'm having trouble finding nouns or words in conversations or I misget your words or “Well, that's not what you said to me.“ And it's like, Well, Mom never said that, so I'm having trouble retrieving vocabulary words or understanding what you're trying to tell me. So sometimes the problem is in language or language comprehension or language production. Sometimes I'm seeing things that are not accurate, so I'm seeing people outside trying to break in or think there's little children coming in and that type of thinking or I thought somebody stole my money or that somebody told my pocketbook or those bad things have been happening. That tends to be more Lewy body, and not remembering recent tends to be more Alzheimer's and having word problems often might be if that's my first indicator, could be more a frontal temporal with a temporal lobe or maybe what I've got is vascular where I have these good moments and really changed moments and it's like, what the heck is going on here? But any time you have, “Whoa, what is happening here?” It's worth a second look because when we have change and we don't know what the change is caused by, it should raise a curiosity because sometimes it's not dementia, but the bad news is sometimes it is. 

Kelly Augspurger: [00:21:28] And you want to get it checked out as early as possible.

Teepa Snow: [00:21:30] As soon as possible, including like, I don’t want to do things I used to do. My mood is different. It's either I'm angry, I'm sad, or I'm giggly and having a hard seem anxious about stuff. All those could be indicators of some cognitive changes could be getting lost. I could be losing track of time. I'm not doing things that I've always done and I don't want to do kind of big celebrations anymore. I'm giving up jobs or responsibilities. I can't seem to get devices to work. Those are not normal aging phenomena. So we need to quit thinking they are and see what's going on.

Kelly Augspurger: [00:22:07] Do people need to see their primary care doctor first? Is that generally what people do and then they are referred maybe to someone else? What's the process?

Teepa Snow: [00:22:15] So the tricky part is I want to really notice what's changing. So when I go to primary care and I'm going to ask my person, I'd like to come along because I'm you know, I'm just worried. There seem to be some shifts here and I want to ask him about him or her about it. But I want to go in with a backup or a recording device of some sort, because often there's so much that's going on and we want to highlight what are the shifts or changes that we've noticed and that I'd like to have it really looked at more seriously. And it could mean that the primary goes through and does some testing and does some checking on some measures of things and does some basic stuff, but yeah, classically then we want to go see somebody who knows more. So a gerontologist or a neurologist or a geropsychiatrist is often the next level of sort of screening and testing. And sometimes what we're looking for is a neuropsychologist who does some in-depth assessment of how brains are working so we can get a handle on it.

Kelly Augspurger: [00:23:10] Yeah, seek professional help. You don't have to do this alone. You know, there's a lot of different professionals and people out there that are willing to help and have great expertise, but you do need to ask for the help. So Teepa, any other advice on how people can plan for care to live well? 
 
 

Teepa Snow: [00:23:26] Don’t make promises you can't necessarily keep. Be careful about promises versus I promise, the one promise I can make is I will do my very best to honor and respect everything we've talked about that we want to do together and that you value in your life. I do think talking about future plans is great before we get into crisis so that it's not a crisis driven conversation and asking people what would you really prefer? Would you prefer to be really kept safe or are you a risk taker? And you want that right to take risks? You know, sometimes asking those really hard questions, are you more wanting to be comfortable or are you more interested in being alert and aware? Because sometimes you have to make hard choices. So I'd rather know your preferences before we get to where I'm being left to try to make choices. And I don't know, I don't know what you would have wanted. So, you know, those kind of things. And then looking at where we're going to give care, who's going to be around to give the care, what kind of things are valuable to me in my world that we want still present and how do I want to spend time and how can I spend time? And finally, what are a couple possibilities? So I'm not feeling stuck with just one.

Kelly Augspurger: [00:24:43] Great advice there, Teepa. A few of those things that you touched on what I consider to be the basics of a long term care plan that I talk with my clients about is who's going to provide care? Who are those people? Who's your care team? Where do you want to receive care and how are you going to pay for care if you do outsource that. Those are the basics, and so all these other things too, need to be considered, but that is really the baseline. And then you add upon that right as you're working through this. So Teepa, you are just a wealth of knowledge. Where can people find more information about you and how you help people? 

Teepa Snow: [00:25:16] Yeah we have a website, www.teepasnow.com. It's really simple. It's just my name without a space.com and we have all kinds of free resources there and things you can sign up for and things you can learn about. We have a YouTube channel. We have Oh my heavens, we have all kinds of stuff out there.

Kelly Augspurger: [00:25:31] You do. You have so many. I know I have perused your website and downloaded some things and have read different articles and just so much good information that people need to use and need to consume because at the end of the day, it's going to help their family if they come into a situation where they have a person in their family that's living with dementia or they know of someone, maybe it's even a friend that they can refer this information to. So Teepa, thank you so much.

Teepa Snow: [00:25:56] I mean even worse for some people, I'm the one who's starting to have the changes and need some support because my family is struggling with that reality, and so sometimes if I'm the one who's starting to think something's going on talking to us, you know, we can at least get you pointed and maybe get some support in place because that's the other piece. 

Kelly Augspurger: [00:26:18] That is, have that open dialogue. Don't be afraid to have these conversations with your family and your loved ones because it's so crucial and so important to the health of everyone involved, right? 

Teepa Snow: [00:26:28] Yeah.

Kelly Augspurger: [00:26:29] Well, Teepa, thank you so much for your time today. Just so lovely talking to you. Have a wonderful day.  
 
 

Teepa Snow: [00:26:35] Thanks, Kelly. You too. Thanks, everybody.