Dementia Education, Policy, and a Positive Approach To Care

Teepa Snow
Teepa Snow

Teepa Snow talks about dementia education, policy, and her Positive Approach To Care.

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Podcast Transcript

July 24, 2023
Note: This transcript was computer generated and might contain errors.

Teepa Snow: My name is Teepa Snow and I'm an occupational therapist and I've been in practice for close to 44 years now, so, I'm old. but in that lifetime, before I ever became any of those things, I was a family member and I was a granddaughter and had a grandfather who moved in. I had a sister, who was younger than me, who developed a brain tumor when she was very young and so that became part of our life. And then a grandma on the other side developed a dementia. And then my mom later in my life developed dimension, related to brain metastasis. and then I had a mother-in-law who also developed brain changes due to problems with glucose metabolism. So I've been in the role of a family member multiple times and a friend. But I've also been in the professional world I try to university and community.

Teepa Snow: Age I've worked in community, I've worked in facilities. I've done, hospice home care. I've done, early identification, wellness centers over the course I worked in head injury for multiple years. So I've done a wide variety of things in many different places in healthcare but also in support here I've done hands-on care. I was a nursing assistant before there was a certification when you just followed somebody around and then you got your assignment, back in the day. so I been around the block a lot, I guess.

Katie Wilkinson: Yeah, I mean, I love that. I'm so excited to have you here to talk about your experience. I am curious, you had all these early experiences in caring for people and sort of seeing healthcare in the systems and all of this, did any of that influence sort of where you decided to go professionally?

Teepa Snow: Interestingly enough. Yeah, it was really a mixed bag because there was developmental disabilities, and then there was elder care. And then, there was head injury so I've always been curious, truly about people whose brains are changing stroke or any of those kinds of things. And I've always been particularly interested in. How do you live life after a change? how do you make life happen and it's a lot more.

Teepa Snow: Difficult than people think to make all this come together and How does it impact families? and, you've got one generation but then you have the next and the next and the next, and it's not all bad but it's certainly does impact and it does change things both the allocation of resources. But also, how people view themselves and move forward in life and, having been involved We help develop the Medicaid waiver program in North Carolina for people who didn't want to go into institutions. They wanted to stay at home. So I've done a variety of kinds of things and that's really helped me inform the work that I do now, which is helping people living with dementia and their families,

Katie Wilkinson: Yeah, I mean I'm excited to sort of focus on exactly what you just said. people living with dementia and their families and given all of your personal and professional experience. I know you've done a lot of research around dementia care, started to tea up the conversation. Can you talk a little bit misconceptions about dementia or myths that exist out there? Things that maybe we can like debunk as we talk.

Teepa Snow: So one of the biggest challenges is we miss the early signs and early state of dementia, way too often. And we're tipping. Most families are typically three to five, eight years in before, they suddenly come to the truth that They're dealing with dementia, and it could be a variety of images. They tend to think everybody thinks Alzheimer's and it's like, That's not necessarily true and they think old old and that's not true and they think, yeah. people get real feel, they won't know who you are. It's like that's way down the road. So let's look at early things and how many times we miss Evidence. And so because we miss the evidence, we miss opportunities, and one of our opportunities we miss is starting to pre plan and prepare before we're

Teepa Snow: In the middle of it being overwhelmed by it. and struggling a lot and then trying to find the space and time and resources to look up and go. I think I could use some help over here. I mean people think help is going to be readily available. So I'll call this resource and arrange for somebody to come in. And it's like


Teepa Snow: and I don't mean to be mean, but it's ninety.

Katie Wilkinson: yeah, I mean and you're you think there's gonna be something available when hits the fan and.

Teepa Snow: Medicare covers this right or that so I can call So this is under there, they've got this insurance right and it doesn't cover any of this. It's like What do you mean it doesn't ever any zero? And so there's so many misconceptions about care, but also about How do you afford care and who's gonna do the care? And What is the care gonna look like? And What is Why do early care? even getting evaluation, How do you do that?

Katie Wilkinson: I mean, I think those are probably my next. Follow-up questions is What are early signs. Someone can look out for how do you get an evaluation?

Teepa Snow: Yeah.

Katie Wilkinson: I think even about my dad who is relatively healthy but I think maybe we should go get an evaluation just let's see what's going on. But I don't want to be offensive or You…

Teepa Snow: Yeah, and…

Katie Wilkinson: can you talk about that?

Teepa Snow: so it's really interesting in most healthcare situations. We would never function without a baseline, So knowing pressure runs knowing what your weight runs, knowing what your blood sugar runs, knowing what your eyesight knowing what you're hearing is it makes sense to know what your baseline is. So you start noticing when you start shifting off that baseline when it comes to cognition, we don't do anything.

Teepa Snow: there's no baseline we take I mean we don't do it ask any physician offices. know. I mean we don't do anything. If somebody brings it up, did somebody else ask you or tell you that or you just curious yourself. you're probably depressed. I mean, we don't as a society, it seems really get curious about how's our brain doing and yet, we know our brain is often one of the very first things that'll show signals or signs of someone's. Not, right. Because cognition is only possible when everything's okay inside you. And even if the reaction is emotional, that emotion is coming from a change in ability somewhere. So my anxiety goes way out by more depressed. I'm sadder. I'm frustrated. I don't understand. I can't find the things you say, what I'm talking about when you can't find the things you want to say, this is ridiculous.

Teepa Snow: And what happens is people just say, she was distressed. It's like How many episodes do I have to have before? Somebody goes, I don't know that she's never had that problem before I mean she used to do speaking internationally. but without thinking that through, we don't want to look at the possibility of changes. And yet, the reality is not, everything is dementia. That changes. It's like, her blood sugars are really wanting all over the place or Her blood pressure is starting to creep up and we didn't really do it as frequently as we could. she is taking on a lot more, since Mom moved in, I'm noticing. She's changing. so, this early opportunity that we have to start having conversations and thinking about, One, you want to stay here as long as you can.

Teepa Snow: okay, if you become physically frail, we can do some things, but if ignition changes Okay, we better think through that.

Teepa Snow: and we don't, Just saying.

Katie Wilkinson: Yeah. Yeah. that's helpful. and I know you talk about the gems. State States Model for Brain Change. Can you talk a little bit about that and how that plays into dementia care how that relates to what you just said? Where does that fit?

Teepa Snow: Yeah, so if I said to you Katie, I think you're mildly demented. just what happens between us when I say something like that?

Katie Wilkinson: I feel a little offended. Yeah.

Teepa Snow: If I say Katie, so you really like your routines and how you do things, and when we make shifts or changes, I'm noticing it's really hard for you. When we make a shift like that, you really want to advance notice and even then it's not easy. Have you noticed that? Or is it just me?

Katie Wilkinson: That feels much nicer.

Teepa Snow: And so what I'm doing is exploring, are you getting rigid and inflexible? Which frequently happens when somebody's starting to struggle a little bit, but I said it in a And the reason for the gem states is, If I don't make you feel valued and I don't treat you as a partner in this. No matter where you are in your dementia, it starts to feel uneven and unequal, and unfortunately, it can get into conflict a much more rapidly and readily versus we're in this together. We need to come together. We've got to figure this out because I don't want to abandon you. And I also don't want to feel trapped. because, as You're as your care support.


Teepa Snow: It's not a good place to be here and it's not good for you, it's not good for me. And so the gem states was my way of saying Look there's a way of looking at brain change and either of us could experience what I call diamond moments, where I get rigid and inflexible Mom. What did I tell you about driving? I mean, it's like That's not your dementia right now. That's my stress but as a care person if I don't start recognizing hey teepa, you're getting really stressed about this stuff and you're getting pretty rigid and that's affecting the relationship. I can actually impact the care routine and bring the need for more care into the system. Just because I'm not pausing and recognizing, I need a break and I need a break earlier in this dimension that I thought I would.

Teepa Snow: Because we're starting to get on each other's nerves, because we were always different people and now you're telling me you want to stay at your house and I'm saying, but it would be easier if you just stay with me. For this weekend and you're like but I don't want to and it's like would you could arguing with me and it's like, teepa Did you just hear I want what I want, give it to me. And so I think that's this trick Thing of it's both of us Do you need to sleep every night? Katie. That's going into a pearl state.

Katie Wilkinson: I do.

Teepa Snow: I mean, going into a pro savings, you close the show and you go. internal repair system. And at the end of dementia, I will be in Pearl State. And so it's not a bad thing. It's a thing and so start to see similarities and differences. Can help both of us. Learn the art of letting go of what we can't have anymore. And recognize where we are and what we can do with what we have.

Katie Wilkinson: Yeah. I mean, I love that as a tool for caregivers to be using with their care partner and I guess Jeff, I had a little bit, but if someone wants to learn more about this, Gems state's model, where can they find that? how do they start using that as a tool?

Teepa Snow: Yeah, we have lots of free things on our website. If you come, we have a YouTube channel but we do have free video clips. We have three resources, we have resource cards and we also have free consults because we really are goal. Is to help people get started, and then go as far as they need to go to get what they need support wise. Yeah.

Katie Wilkinson: Yeah, thanks. I don't want to jump ahead to where people can find you, but I think, this is interesting and that would have been my next question. And Can you talk a little bit about? all of your work is sort of informed, by this positive approach to care, and you've just talked about one tool. Can you talk about how that fits in and how you sort of developed this positive approaches to care? And what that means for? How givers interact with their care partners?

Teepa Snow: Yeah, so when I was first starting out, one of the things I would watch people do is come up, lean in on somebody and say, What do you want for lunch? and it's like, I don't think, how you look when I'm sitting in the Jerry chair. I'm sitting in the chair and you're yelling at me. I wasn't yelling, She's hard of hearing, it's Okay, let's try this, because, the likelihood of me wanting to engage with you interact with you answer, you even be able to think straight when you're right there. it was just not so good and instead of I go Katie.

Teepa Snow: Time for a little lunch. Do you want something? Hot or cold.

Teepa Snow: so, Come on,…

Katie Wilkinson: I'll take something hot.

Teepa Snow: let's go. what can find. and all of a sudden, I'm not doing battle and I'm not arguing and I'm not feeling frustrated and you're not frustrated. So early in my career I started trying out some things and then I started helping other people try out things with their own bodies with their movements with their words with their visual regard. And I was doing a lot of research into, what can people living with the brain changes that come with dementia? What do they still have the ability to do? And if you notice that you can use it, you can't come up with what do I want to eat for lunch? Out of a. but if I say something hot or cold,


Teepa Snow: that may be a decision, you can make. And then I say, come and look at it Because when you see what the option is, it might be a whole lot easier than trying to use language to figure it all out. so,

Teepa Snow: Over time, I've just had the opportunity to develop a number of skill sets and then patterns of behavior. And that's what we use is, we used what works between human beings and understanding how humans work, and how their brains work. And we're pretty committed to trying to figure out. It can only use what you have, and asking more than you have is just gonna get both of us in the soup, but I do want to use what you have because dementia is going to rob you of it. Soon enough. I don't want to participate. I want to keep things going for both of us because it turns out of you, keep doing everything you can for as long as you can, it actually does reduce

Teepa Snow: The overall demand of care and heaven knows it's a long journey for many people and it's a very intense journey as we move to the late state. And if I can keep you functioning in that fire ability state for longer, that's where we want to stay for longer.

Katie Wilkinson: Do you have any words of wisdom I guess? Because I think there's this Understanding or people think that dementia is they don't remember anything immediately. And it,…

Teepa Snow: Yeah.

Katie Wilkinson: it's a progressive disease, it's gonna change over time.

Katie Wilkinson: And I guess any tips for someone who's starting out who thinks that but really wants to be a compassionate caregiver. there's lots of tools you can use and in ways you can get skilled. But how do you start so that you're not leaning in and yelling at someone? What do you want for lunch?

Teepa Snow: So one of the really basic things to understand is, there's two ways you can turn your body, if you turn a little to the side and yet face the person that's called supportive. You might get right in front of you and that's confrontation. And if we realize as the brain changes, so does the visual regard ability and so the world is getting a little smaller for me if I'm the one living with dementia. So if you get right in front of me, you feel my world up and I'm having more trouble frequently processing language. It takes me a little bit more to get it. And if you're leading in right in my face and speaking in a really loud voice, it actually makes it really hard. So using a typical voice but using more visual cues like, Hey, Katie Would you like something hot or do you want something cold? I brought two different options. Which would you like?

Teepa Snow: And it's just really looking at just verbal queuing. Not putting my hands on you without permission. It's looking at simplifying, not baby fine. And it's looking at really listening to what you ask. So if you say to me, what time is my appointment, And my brain goes. I already told you that twice. then I need to control the impulse to say that and go you're wondering what time your appointment So what I did is acknowledge your message and say it's gonna be a two. hey Katie, could you do me a big favor?

Teepa Snow: Because what do you want to say right now? When I say, could you do me a big favor? Okay. …

Katie Wilkinson: I'd love to do a favor.

Teepa Snow: come here. Let's get the dishes out of the drainer right now. Because what I need to learn how to do is, when you give me. I can't hold on, I can't hold on. I can't hold on, but I'm worried about missing something, which is what that appointment thing is. Then I've got to have a strategy. I'll answer your question, but now I've got to engage your brain. If I don't engage your brain and your body, guess where you're gonna go Back to the same question. And asking the same thing and it's like, she's driving me crazy. It's like, all right, we'll take control over that. let's do something about it, rather than complain about it.

Katie Wilkinson: Yeah. I mean I love everything you're saying also I think it's yours you're speaking to a lot of How do we take care of someone but also take care of ourselves so that we don't, go nuts and…

Teepa Snow: Ultimately, yes.

Katie Wilkinson: yeah at the same time

Teepa Snow: Because explore this, I mean when one person gets meant to everyone around them is living with it. But there's almost always a partner

Katie Wilkinson: Yeah. I'd love to talk a little bit. I think sort of coming out in the same vein about technology and advances in technology and…


Teepa Snow: Yeah.

Katie Wilkinson: all of these options we have now remote monitoring wearables etc. Can you talk a little bit about, how that's gonna help dementia care and caregivers

Teepa Snow: Absolutely. And so I think if we could be sort of open we never know when our brains are going to change. One of the requests I have is I have noticed a few things. And so what I really like us to do is have a monitoring system. So something does pop up, we'll notice it and not put it off. So, one of the things that we know can happen, Mom is what can happen at night is you get up and you go to the bathroom a lot more and you don't even realize how many times you're getting up and going to the bathroom and we know that Falls can happen during that time. So the worst possible thing for me Would be to find out you fell at 10 pm. We didn't know about it. Until the next morning at 11:00. So, I'm gonna ask you for a big favor.

Teepa Snow: And so I believe in the use of technology but I also believe we don't always have to be sneaky and there's a difference between being able to push a button and early on, I may recognize. yeah, this is what I'm supposed to push the button, something's happening. And there are times when I need to monitoring system, that is looking for number of trips. this is the norm for you. This is your baseline and boy, you're making 15 trips here or that door opened, and it never closed, and it's the front door. And so there are systems now available that allow us to agree.

Teepa Snow: I don't want somebody in your life. Any sooner than you do. I don't want to pay a phenomenal sum of somebody in your life when I don't have to. But we have to make sure the system we pick is a good system and it will notice things and you have the ability to make use of it because if you can't remember to push the button or you keep taking off the risk thing, that's not one that's gonna work for us. So it is a bit of understanding and learning about this and then knowing a good way to introduce something.

Teepa Snow: But they're lucky.

Katie Wilkinson: Yeah, I mean, You just brought up a really good point about, you're talking a lot about partnership and collaboration and inviting someone sort of into this care experience, not just happening to them. I guess my question about technology and something like, remote monitoring. you've just talked about is around consent once someone's further along in their disease progression, how do you continue to collaborate with them? …

Teepa Snow: Yeah.

Katie Wilkinson: once it's progressed to a point where it's a necessary thing,

Teepa Snow: Yeah, and so that's why we wanted advanced directives. And that's why we want somebody to identify who their healthcare advocate is going to be, and we want to have those conversations in advance. And we want to say, If I want to stay here as long as possible, And so now, as you're advocate, I'm gonna say for you to stay in this place. I don't need to say it to you again. I know that we need to monitor what's happening at night because if we don't, and something happens, you're not gonna get to stay here.

Teepa Snow: So we need to have some sort of system, and I don't think we're to the place yet where we need people all the time. You always said you hated having too many people around. It's like, Okay, my best guess this is the best strategy we can use for the short term and maybe for a while we may be able to get two three years out of a tech system. That's well built and well designed for us and three years, is a lot of funding available for another time. We also may want tech systems that allow us to, call ubers or allow us to use systems where I can get my zoom to pop up and I can talk to you without me having to know how to make zoom start or Google meet start or whatever you can call me in a pops up and I go what are you doing here? And it's like there's what we've come so mean one thing about the pandemic boy, did it get us better at doing?

Teepa Snow: This remote.

Teepa Snow: But I think technology has so many opportunities now and we're at the very front edge. I think there are systems out there that are AI oriented that are not intrusive and they're not retaining my whole life but they are picking up on noises or experiences or movement patterns. And they learn faster than we can sometimes. This is not her usual Something's up.

Teepa Snow: And it gives me the alert before the crisis happens and some of the systems have actually been able to demonstrate, they reduce the risk of hospitalizations rehospitalizations. They reduce the risk of medication complications problems with falls because I'm starting to notice some instability, it allows us to start picking up on things patterns of socialization. that can help much more effectively. and when I say effectively but also social effectively, then we wait for something to happen. Which is our current pattern all too often.


Katie Wilkinson: Yeah. I mean, to be honest, I hadn't even really thought about how AI has potential here in dementia care really any care scenario but that really exciting. I obviously am an advocate for I work for a tech company we are a tech company but I am curious. Are there you've obviously seen a big change over the course of your career around? Technical technological advancements? are there any downs?

Katie Wilkinson: Are there any downsides you've seen around tech in dementia care?

Teepa Snow: So what I was just here, yeah, what I was just doing is the chair alarm or the battle on, the old-fashioned ones where they would just yell. And so there's nothing worth the alarm that goes off step when I'm up. and then to have somebody keep on and you need to sit back down, you don't want to follow you because unfortunately, it's still used in some locations but there's that diminishes and there's 10 supports. we've got to make sure our tech matches abilities.

Teepa Snow: And when I say that, I'm not just talking about the person living with dementia, I'm talking about their care partner because sometimes in spouse partnerships for instance, I have somebody who has vision impairment and physical impairment, like, horrible arthritis and they've got glaucoma where they've got cataracts and they're trying to be the primary and it's like they can't read the medication any better than I can figure out what I'm supposed to do. So, having a tech system that is effective for both of us. Can be really important having a system where it says. Katie, it's time to take your pills and Katie goes, okay.

Teepa Snow: your bills and there's no way to bear about verify that I think you took your pills because, you flick the box and it's like she didn't go do anything and so one of the things we know is some of the tech systems that are created are not really Field tested with the people that are being asked to use them with the people who are going to support the musing them. And so we end up with a system that doesn't work well, but there's nothing wrong with the tech. It's just not a good match and I think of all things, that's probably where I've seen the biggest struggle over the last five to ten years is Figuring out where someone is and for some people picking up a tablet. And doing something with your tablet.

Teepa Snow: That's clicking on the buttons to get the video to play That's Tech. Yeah it's like an app. no. No I'm not up for now. That is too much. I'm not into the app. I'm just trying to get the video. and we tend to think globally of so, yeah, I've got this great app and it's like How do you turn this on again?

Katie Wilkinson: and yeah, no, I mean I am middle of the Millennium Millennials and still I'm like how do you use that thing? So I understand what you're saying about matching.

Teepa Snow: Good.

Katie Wilkinson: Someone's abilities. Do you have any resources for?

Teepa Snow: Especially when they…

Teepa Snow: I mean, this is where did you say? Because they keep changing, in the morning on this, but in the evening on that and,…

Katie Wilkinson: Yes. Yeah.

Katie Wilkinson: Right.

Teepa Snow: and it's like, So, we need these flexible systems and smart people who know how to apply them accurately. But yeah.

Katie Wilkinson: Yeah, do you have any resources for where people can find? I guess, maybe assess where they're at with Tech and then find the appropriate. Tech.

Teepa Snow: there's some national and international groups that are starting to work with tax for people living with dementia. The international is it Alzheimer's? No, Wait a Minute, Dementia International is one of the associations or organizations. That really, is made up of people living with dementia who are working with tech companies to say This doesn't, but there are also groups of high tech people. They tend to be toward the coast rather, than, in the middle of the country all that Chicago, probably qualifies, but you will find universal design, high tech. Companies will find international companies that are starting to recognize. WoW, it's more than just elopement issues and wondering, issues and falls recognition. There are so many more alternatives and opportunities. And so, it's really starting to hone in on where our resources for people, living with dementia and their care partners.


Teepa Snow: Agencies on aging may or may not have access to a lot of that. They do have caregiver support personnel. How skilled they are with knowing about the latest in tech though. I mean it is overwhelming for many people and that's what's my baseline on tech and where can I start investigating? Good tech support.

Katie Wilkinson: Yeah, that's super helpful and my next question is sort of two fold. It's coming out a little bit of what you just said around. Finding resources can be Trial and error of what does or doesn't work and be expensive. So I guess I'm curious a little bit about that. Maybe the bigger question is Just we know Finances are primary concern for family care givers and you just a little bit about that at large, how people can be financial planning, what they should be thinking about sort of at each stage of the disease.

Teepa Snow: Yeah. so finances. Yeah. It's usually a big. What? When families come to recognize, how little is reimbursed in the world of dementia? I mean, it is one of the most expensive conditions you can live and die from. And yet it's one of the poorest reimbursed of anything. Mostly, you'll be reimbursed when you have an acute episode of something else.

Teepa Snow: Or you You have something bad happen to you? Most systems are not designed to support someone living with dementia and so there's a huge potential of wasted resources financial resources and time resources and knowledge resources in trial and erroring. So one of my recommendations early on is Whoa pause. do you have someone who's very knowledgeable about how to protect your financial resources and do you have someone in your mix? Who's very knowledgeable about what care resources and what options there are before you need them? So you can start looking at where might I fit in here where my mom or my sister fit in here. Giving this situation, here's the amount of resources we have

Teepa Snow: what is the pattern that makes the most sense And then this is where you have to have somebody who knows how to set up care plans, and know how to plug in resources. And the trickiest part is, they also need to understand the different dimensions. And what they look like and how they are, and really appreciate the people who are going to be living with them. So that we have a system that is built layer by layer and we call Six pieces, putting the puzzle to go, so we never lose sight of the person. But we also don't lose sight of the people who are involved the environment that they're in the other health conditions that might be impacting. But also, how are people going to spend 24 hours, seven days a week? Because that's how life happens. And, as soon as you start putting all that together, your brain goes. Wow.

Teepa Snow: This could get to be a lot. It is like, So let's pause early on and let's take a preview. And then, let's look at some resources. We're gonna need to make this journey reasonable and so invest a little time, knowledge and money up front before you get so far in there. That and ve wasted you're like, I didn't know this wasn't going to cover that and it's like, Yeah, I hate that for you. I mean, I really do because I mean if you'd asked me, I would say, Yeah, none of that's gonna be covered. And an example, a simple examples, incontinence products No one product. Kindness products are covered into you get on hospice.

Teepa Snow: wait, Alive early on. I'm gonna meet him in the middle. I'm gonna need. So what that means is, I want to try to preserve continents as long as possible, Who do I need to do that? How do we do that? that's where tech monitoring when she going to the bathroom, what's going on? Because you have a UTI, how well is she drinking and hydrating? So just as I say all that Katie, I mean, people could feel overwhelmed and that's why you really need somebody who has been down this journey multiple times. So there's not this overwhelm sense so that they can support you and so you don't drown in the mouth, that can happen and does happen.


Katie Wilkinson: Yeah, I mean I love what you just said because I think people I mean I can speak for my own experience you become a caregiver and it's full tilt. my gosh,…

Teepa Snow: Yeah.

Katie Wilkinson: what's happening? And you're like I'm just gonna go and…

Teepa Snow: I know I don't have time. Yeah.

Katie Wilkinson: and I don't have time to pause and figure out what's going on. So I'm glad you said that cuz I think it can be a hard reminder, because everything feels just urgent and important when the sort of hits and it sounds like you guys have a lot of resources. I also just want to plug someone else we've had on the podcast. Dr. Brittany Lamb. She's a emergency room physician and…

Teepa Snow: Absolutely.

Katie Wilkinson: she talks a lot about medical decision planning, so that's a whole other episode. But I think this kind of work and…

Teepa Snow: Yeah.

Katie Wilkinson: you just said time energy and money up, front can be worthwhile.

Teepa Snow: And if you have some resources, really finding somebody who's going to help you protect and use them wisely because sometimes things get really tricky with the different health insurance policies, and the different rules and regulations about and if we're going to change states, we change early, Should we wait? I mean, if we're gonna change locations of care, who's involved in care? How frail are they? all these things start to be important when we start looking at recent, we've got plenty in savings, it's like, no, you don't care how much you have, you don't have plenty when it comes to dementia.

Katie Wilkinson: I mean, I bet that leads perfectly in my next question and you've started to talk about a little bit around the cost of caring is extraordinary and you think even enough in savings but you don't and this whole system is just stacked against us. It feels like Can you talk a little bit about policy and what we can be doing as individuals to be advocating for change here…

Teepa Snow: Yeah.

Katie Wilkinson: because it feels like It's only getting worse.

Teepa Snow: It's only getting worse and what are the most frustrating things is? We had all this, we've got this new system of Obamacare and stuff, or whatever you want to call it, but we have new opportunities. None of them addressed to mention. We still haven't addressed dementia. And what we have is a whole bunch of people who are on hospice, but then they come off of hospice. Now, I'm back in the boat and we don't have the support for folks and families. Particularly housing is a huge issue but our next issue is people to provide the support and care and the number of available helpers is going down. While this number of mean, people is going way up and families are now really feeling gutted emotionally about.

Teepa Snow: honestly I can't not work. I can't afford to not work. What do I do? And so dealing with. Okay so what are some alternatives and options? there's adult day health, there's adult day there's a senior care. There's putting people together in small group. I mean, But if you are not aware of those resources, all of those are private pay resources. And then we have to switch over to Medicaid. if you make a mistake in using your assets in certain ways, there's a penalty zone and that's means time that you don't qualify. and then if you have lots of money and you use it in ways and then you find yourself but, she's gonna be in an environment. She hates it's like. So we have to go to a whole nother system. No.

Teepa Snow: And so And I would say, for cares. there's this additional cost your own well-being and health And even time that you have. Because what starts happening is it starts being your life, instead of being part of your life, it is your life. And how we've done that for several generations with very poor outcomes and we've got just start doing a pause button and going, Okay, we need to do this differently this time. Let's really look at how we're doing it.

Teepa Snow: And honestly policymakers still haven't addressed. Some of the bigger issues of the inequalities. you have to go to the hospital for three days to qualify for Medicare coverage for your first, brief stay in the long-term care facility for rehab. And it's like, but if she didn't need three days, I mean they were able to stabilize her but she's really weak and so she's qualified for Medicare and it's like Somebody needs to take a step back and go. Okay, this doesn't make sense and I feel like, everybody's so scared of dementia and is potential costs. I mean, but we're always spending well over. I mean the cost for care this last year was 70 estimates, 72 billion dollars. But I guess if the carers are supporting that we don't need to worry about it as a country, right?


Teepa Snow: Wait a minute. What about their lost days at work? What about I mean? I think, employee leave Is a whole issue How do I have time to do some of this? How do I our employee assistance programs design, not just for children, but also for caring for someone otherwise and prepare us for that and know what the resources are for us, Could my employers start being more, responsive to my needs. So I can stay on the job. and I think our policy makers are not really meeting the needs.

Katie Wilkinson: Yeah, I'm interested to see sort of what happens. In the coming hopefully soon because it does feel caregiving. As a concern is more in the national spotlight but you're right we're not keeping up.

Katie Wilkinson: so I am curious and really hopeful for what might happen to not end this conversation on a downer about how the system stacked against us, is there anything you're seeing that's like

Teepa Snow: Yeah. Absolutely. Yeah, I think there are selected policymakers who are getting the message, we have certain states that are going okay, we need to become dementia aware. We need to get dimension knowledgeable, and we actually are going to have to become dementia competent, frankly, because our population is there, and we need to move past being just friendly and say, we're friendly to develop the skills to actually deliver so that a small group of people could get together and be supported. another group of people get what they need.

Teepa Snow: And it doesn't need to cost a fortune. What we need is the systems that support that kind of acknowledgment, we do need apps, we do need tech. But we also need human beings who can appreciate the complexity of this and help people solve their situations and we are out there. The tricky part is it's easier to get money for a quick fix pill often than it is to really help people figure out. How to keep working through life when the Pill will buy me, maybe a point on a scale but

Teepa Snow: in reality I can really use that money that you were going to give me for the pills. How about if we put that into support structures with music therapy and with animal assist over here and here's where Wednesday we can go and do this. And that could happen and we start and build braver isn't as a gentleman, who's doing some really big picture stuff, that I think sustainability is our big issue, and it's exciting to see some movers in Shakers saying, Yeah, we're gonna figure it out. If you can't figure it out, we'll figure it out.

Katie Wilkinson: And is there something I'm really encouraged by is sort of this, caregiving community. That's on social media. And there's a lot of people that are speaking up and getting louder and have, pretty large audiences because we can reach people. Faster and…

Teepa Snow: Yeah.

Katie Wilkinson: wider than we used to be able to. Is there anything that someone like me or these other people that I've just referenced? What can we be doing on an individual level to be contributing to the work that you've just mentioned?

Teepa Snow: So, I think one of the things that you talked about early on with your dad, is like, we don't need to say Dad, I'm worried. There's something wrong with you but it's like Hey Dad, what's really curious. I'm actually going to the doctor next month and I'm gonna say, How do you assess for baseline cognition on somebody or How would you assess my basic stress level? So that we would notice over time if I started to show signals because right now I've got this and this and this going on but I think I'm pretty good but could we just sort of start being curious? And so making a higher request from, those who serve us to say I'm really curious about this What if and be more willing to make that call and say I'm really concerned that we have such poor coverage for people who are living with brain changes. that it's so hard to access and get resources,

Teepa Snow: Incontinence products like a tech system that could actually buy us a significant amount of time. But we have to be sure it's a good match. So we need systems that work and I think each of us sort of starting to raise those voices and then coming together and presenting, This is a good thing. This I find not okay and we aren't going to accept it because it's the cheapest thing available. It's like She doesn't work. Why should I keep doing it? I don't understand.


Katie Wilkinson: and yeah I mean I love that I think there's a tendency to want to do the biggest thing and run a huge campaign but we've just said is I think really helpful remember that every little action like the squeaky wheel gets the grease and if all of us are doing something, but feels like not monumental changes gonna happen over time.

Teepa Snow: No. Yeah. I mean, our motto is one mind at a time, changing the culture of dementia care, one mind at a time. Because if you change something and something changes in, that's the name of the game and building an inclusive community. It's really the ultimately…

Katie Wilkinson: Yeah.

Teepa Snow: where we're gonna have to go. Because the numbers are going to force us to go there.

Katie Wilkinson: Right. Yeah.

Teepa Snow: Sorry. Yeah.

Katie Wilkinson: I mean it's true and hopefully we can keep sharing this out so that more people hear it and we like to ask everyone on the podcast and those questions a little bit different for you. But the question normally is, what do you know now that you wish you had known at the beginning of your caregiving journey questions a little bit different for you.

Teepa Snow: this is a marathon. And anyone who's going to prepare to run a marathon. You don't want to start off in a sprint and you do need a team to help you get there and it takes time to get ready for this. So start thinking there's a potential that I may be asked in my life to run a marathon. Never thought I don't want to run marathon. what? Life doesn't care. So just in case you end up having to run the marathon. do a little prep and at least put it in a bag so that you have it, if you need it because I hate for you to be Halfway there and realize. This is a marathon. I can't do a marathon. It's like Sorry. It is.

Katie Wilkinson: Yeah, I mean, I think that's great. I am Since having gone through caregiving experience myself, I feel obviously the work we're doing a givers but also just personally motivated. To your point especially people that are expecting Givers daughters, only children lgbtq population minorities. These people are highly likely to become caregivers. And so, to your point,…

Teepa Snow: You need to be advocates?

Katie Wilkinson: let's do some coaching and prep. Yeah,…

Teepa Snow: Yeah. yeah,…

Katie Wilkinson: Before it happens.

Teepa Snow: I mean yeah, so realizing okay, if I'm going to need to advocate What does that mean? Who do I need to? because there's all kinds of caring that you're gonna need to do in these roles and it is a marathon and you do need to look around and say who else is right there marathon here. we don't all start at the same time but many of us will be in the marathon and some of us so we can also be the people at the water stations because they turn out to be real important. And the people who plan the course unfortunately and this marathon boy, do they leave the hills for the end, and it's like who thought that was a good idea.

Katie Wilkinson: And yeah, I think I thank you so much for everything you've shared and…

Teepa Snow: He?

Katie Wilkinson: if people want to find you online, where can they find you to learn more about your work and resources?

Teepa Snow: there's all kinds of places. We have YouTube channels, but we have teepa, which is just my name with no space and we have lots of free stuff and lots of connections. and then we do have YouTube. We have tiktok, we have Instagram, we have, Facebook, Tina It is the same thing. It's just in different spaces. Yeah, there you go.

Katie Wilkinson: That's perfect. be sure to tag you especially your website so that people know where to find you. I really appreciate. I mean you sharing so much information with us.

Teepa Snow: .

Katie Wilkinson: This is super helpful to our audience and hopefully yours.

Teepa Snow: Thanks, Yeah, for sure because it's a pretty wide reaching condition that people are trying to figure out. Thanks for the opportunity.