¶ Intro / Opening
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¶ Introduction to Cognitive Impairment Care
Welcome to Episode 272, When Cognition Changes, Compassionate Responsive Care for Cognitive Impairment and Dementia, featuring Teepa Snow, licensed occupational therapist. Make sure to subscribe to be alerted about future episodes by Clearly Clinical. Learn, grow, shine.
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¶ Teepa Snow's Personal Journey and Insights
Hello to our listeners. My name is Beth Erias, and I am excited and honored to be joined today by Tpa Snow. Teepa is a licensed occupational therapist and also a fellow of the American Occupational Therapy Association. And Tipa has joined us today for a conversation about neurodegenerative disorders and how to provide more responsive, supportive care. This is Such an important topic. Thank you so much for coming.
I am so pleased to be with you, Beth. It's uh it's an honor and a privilege to get a chance to share information. So thank you.
You have been working in this field for quite a while. You are considered one of the thought leaders in this field. Before we dive into this topic, I would love for you to tell our listeners a bit more about your background and also how this came to be something so near and
Okay, so many people would think it's because I have family connections, which I do. I had a grandfather that moved in when I was young who developed vascular dementia, but at the time we just thought he was getting old. I mean, we didn't know any better. He was getting eccentric.
He got turned around and confused after my grandmother died. Uh, we had to go to Cleveland from Pittsburgh to get him because he was breaking into people's apartments thinking he was the superintendent and was fixing their pipes. Um he came back with us. My mom was a full time teacher. Um, so I became the care partner. And I was the one that uh would convince him to stay at five PM when he wanted to go back.
he had work to do. I was the one that learned to cook so that he would stay and eat dinner. I mean it was horrible. I mean I I I'm talking about hard hamburgers. and um really, really bad meatloaf and um but we did make mashed potatoes from scratch'cause I didn't know any other way.
Um, but canned green beans that I would just pour out of the can and put on the plate because he never ate'em. Um so but that but that actually's not how I got in. That was an experience I had with my grandfather, but there was absolutely not really any awareness that he had dementia. But then on the other side, my grandmother, on my dad's side, started developing some dementia. And hers was different. Hers was very different. It was Alzheimer's, which we found out after.
um a lot. But the reason I went into it was it was either that or developmental disabilities, um, which I really enjoyed working with kids with developmental disabilities. uh special ed. But when I went to O T school I had a geriatrician, uh occupational therapist and um she really got me excited. So I moved into head injury, stroke, and then geriatrics and then finally into the field of dementia specific.
It's a it's been my experience both personally and clinically that it's not something many of us are prepared for.
That's an understatement that's.
In in like how to engage, how to conceptualize. And I'm grateful on many levels for the folks like you who have leaned in to provide guidance to the rest of us. Um my listeners know that I've had some medical stuff going on and just to kind of show my cards, in the last few years I've been struggling with uh some cognitive deficit. and the question of what's going on has always loomed large And it also has given me a very unique perspective on what it feels like to be losing your faculties.
and how many layered feelings come with that. So there's my lived experience. Um, and I would love for you to start this conversation.
¶ Defining Neurodivergence vs. Neurodegeneration
Can you break down the difference between neurodivergence and neurodegeneration? Because oftentimes when we have this conversation, if you haven't really like looked into this or lived it in one way or another or studied it, these terms get muddied together and they're very different.
Yeah.
So what I would say is without having a baseline on someone, it takes so long to try to figure out, okay. Are the changes or the differences, you know, that someone says they're experiencing, are they things that are due to an acute kind of episode of something that could be resolved? Is this just part of their makeup and we're starting to see it play itself out over a lifetime? Or is this something new that's developing and is developing by taking away brain chemistry and then brain structure?
I mean is it literally taking a brain brain tissue but first it interrupts some of the circuitry. It it impacts the chemistry. So we'll often see it initially as a change that's inconsistent um in emotional sort of state or cognitive state abilities or it might be in uh decision making or interest areas. And so we could look at somebody and go, Oh, well, they're just depressed. You know, I think she's just anxious.
And if I've had that in my past, it's super easy to say, well, you know, it's just more of the same. She's just stressed at this point. of which I'm feel certain that there was an episode. And and I'm just curious for you, Beth, what was your was this a favorite thing for somebody to say, Oh, I have that too, Beth? You know, you know you know, like really, you're worrying about nothing. I mean like
This just
you know, you need to not make a mountain out of mo you're you're worrying about nothing. This happens to everybody, really. Was that was that frequent or
Fine.
Are you ready?
My journal. Yeah, i i for me it was cognitive changes over the course of years. Now I can see it a bit more in retrospect because we finally know what's going on and I'm in treatment and I've had some gains.
We don't know how much I'm going to get back, but you know, it remains to be seen. But yes, in in our efforts to connect, sometimes we minimize somebody's lived experience and I can't tell you, especially the you know, I'm middle aged, especially how common it is in middle aged to be like, oh, having, you know, one of senior moment or like whatever the language is.
And it's like, no, I can't find my way home from the park that's a block away, so we're talking about something different. Um, but yeah, it it I think because everybody can relate with forgetting where something is or forgetting somebody's name or checking out during a conversation, w we m unintentionally minimize the lived experience, especially in the early days. Like my and I would love for you to expand on this, but like my experience, these were not
constant progressive deficits. There were good days and there were bad days. And then there were pockets of time that were, you know, like this was an a nonlinear process. But so there are times where I look and sound Like I did 20 years ago. And then there are other times where I'm completely disoriented. And even though I'm making eye contact, I have no idea what you're talking about.
I've certainly had it happen where people get frustrated, they get an attitude, and I'm like, I'm just trying to under
It's like well I've told you ten times. What part are you not getting? Now, if you look at my visuals and my verbal, I mean, I'm intimidating. I'm trying to intimidate you into what? Into appreciating your brain isn't working? You already know your brain isn't working.
So, you know, that idea that I have a choice to make at this point. I can either take in the data that wow, Beth's brain is really struggling right now. Now I don't know if this is Beth just in that moment having some differences or if Beth is experiencing something that changing in a direction that all of us really hope never happens, but does. Um
So, you know, for right now in this moment I'm gonna use a technique of support that would support either. But I also know as a as a practicing therapist, I also wanna look at what's the direction of travel we're probably looking at here as we move forward. because I'm gonna have to do a lot more training with a lot more people and we're gonna have to really have a game plan that when this does shift, we've got the plan in place for these shifts because this is not gonna stay static or stable.
mean so for me neurodiversity means you have more stability in the patterns that you have. Um when I'm talking about neurodegeneration, there is no stability. It's an ever changing disability. Ever changing. And um people have a hard time wrapping their head around that. And yet if you can, you can be in a moment with somebody, whatever their brain state is, and appreciate it in that moment. And if you give'em the right support, the brain change might shift.
But I can't control that. I have to appreciate it, but it's not mine to control. It's what's happening inside and around your brain. Um, and I can't fix it. Nobody can right now, despite what people want to
¶ The Impact of Undiagnosed Cognitive Changes
In therapy, I've had the experience with adult clients of all different ages at different points talking about memory issues. And the water gets muddied further when we look at age related cognitive decline and the difficulty discerning what is typical for someone of fifty-nine years old, we'll say, and what is atypical, and it's been my experience both in work with clients and within my family. it's really difficult to discern and also at the point that things get
severe enough to really notice, oh, this is atypical. There's been a lot lost and a lot of time has usually passed and all these opportunities for early intervention.
Yeah. And that for me is the saddest. Because I'm curious, Beth, even with yours ex with your situation, can we are you comfortable? Yeah, going there a little bit? If at 35 we said, okay, we're going to do a baseline on your cognitive capacity, which it's real short, it's real simple. We're going to keep it easy. But I just want to have something we can go back and check on from here on out. Because the only person that's typical for you is you.
So if at thirty five you have a performance kind of thing and then after that, every year we sort of do a performance check in and a performance check in like we do weight check in and blood pressure check in and heart, you know. We look at things, but the one thing that is most sensitive to shifting and changing when you have a systemic issue is brain function. We don't do that. We don't establish a baseline for ourselves.
So we don't have anything to measure off of. We're picking some crazy friggin' norm that has nothing to do with me. I don't know my left or my right. I have never been able to do my left or my right. These are both L's in my world. I don't care what you do. You can put all kinds of stuff on me. You can put ribbons. I don't care what you do. Don't listen to me when I give you directions.
If you want to know where to go, watch my body because I will get it right, but I can't say the right words for the right movement. So if you were to use me, I'm directionally challenged. But I can get anybody anywhere if you follow me, but I can't tell you about it and I can't use those words. But if I were to take a standard test, I might test as having
impaired cognition. And yet it's a lifelong condition for me. So it's like we need baseline and then we need to be checking in. And I don't think we do that. Mean it it doesn't need to be major. I'm not talking about neuropsych psychological full profile. I'm talking about Animal fluency, and I'm talking about something like trail making where I do divided attention. Can you do those things? How do you do those things?
Let's record your voice. Let's record what you come up with. Let's listen to it. Let's see how you sound this year. Because I think we aren't invested until there's a problem.
Yeah. And until the problem is noticeable. And that has been my lived experience. and having been through now multiple rounds of neurocognitive testing, yeah, there wasn't a baseline. And so at the point that I was doing it however many years ago for the first time, They're like, oh, you know, your cognition, blah, blah, blah. And I'm like, yeah, except this used to be a gifted brain and something's not right here. Like something's not right. And they're like, oh
It's normal.
And then you do it again a few years later and go, Oh my right. And and that's not I I don't think that's a unique experience because you're right. We don't have a baseline. It's not like we can say this was your cholesterol level and this was your weight and we can compare It's it's complicated and you know, if you're not doing a full neurocognitive battery, the tools that you're doing, likely in a neurologist's office, are a year, six months, however long after you got the referral. And also
Nine months at least.
Right. It's a snapshot. Uh, and again, good days and bad days, and that's been my experience. Like I I remember the first time that I couldn't put the hands on a clock. For the life of me, I couldn't figure out how that worked. But I was able to do it again two weeks later and I'm like, what is going on?
Yeah. And for you, here's the piece that I think pops up um at least in the work I do a lot, anasagnosia. The inability to be aware of your loss. Now you were super aware of your change. You were super intensely aware of it. To a point where people were saying, Don't be so concerned. That's probably why you're having problems. You're just focusing on it. It's like, I don't think that's the only reason I'm having problems. I think something else is driving this personally. Could we look?
Well, you know, I'm worried that you're maybe just you're just worried you know what, I'm gonna give you a medication to cause you not to worry. And it's like, you're gonna that's the last thing I need is another med to mess with my brain right now. Thank you very much. Um, but at the same time, uh, for people who are not aware of their changes.
the people around them are going, I don't know what to do. I mean, I don't think she's safe managing her finances. She gave money to this group and I mean, she doesn't even remember doing it.
And yet we're ten thousand out. I don't and she doesn't trust her daughter, but her daughter's the one that asked us to see what's going on. You know, this whole it's so I think neuro neurodegeneration without awareness and and neurodivergent, when you're neurodivergent and you don't recognize you're different, um, it can also be a problem. Because it's like you think it's everybody else but you, which makes it interesting to try to negotiate a system that is pretty devoted to mainstream.
Yes, and my experience in this chapter of my life has given me a lot of insight that I didn't have before. I'm grateful to have the insight. It came at a very high cost. Uh and I for me, it just highlights how much we're missing for the person who is living. And as you said, the difference too of whether or not we're aware of that.
Deficit.
or not and for me having had services now with neuropsychologists, occupational therapists, uh cognitive speech therapists, not to mention like Western medical treatment. It has been oh I'm just sighing thinking about it. It's been such a relief to be in the company of people that understand it. So then they say, Hey, when we met two weeks ago. We had talked about the Pomodoro map.
and trying to work with your attention. What have you done toward? And I'm like, nothing. And then the question is, okay, let's talk more about it. What do you need from me? Like, can I help you download
Yes.
Could you help me download the app? It's so hard for me when there are so many options and I don't know which one to choose and There's so many decisions to be made, but like that was a paradigm shift to go from a world that was saying like it's probably nothing, you just need more sleep. Have you been eating the Mediterranean diet?
Have you got good sleep hygiene habits? Are you getting out and being social? Are you making sure You should exercise. Are you gonna exercise? You need to do something that you're with somebody though, not by yourself.
Right.
Oh.
that something is very wrong. Like it's not gonna be effective. But it was I can't tell you for my lived experience, but also in my experience with loved ones. When you're in the company of people who get it, it's just like the most Soothing blanket where it's like I don't have to pretend right now like I
¶ Adapting Therapeutic Approaches for Brain Changes
And so the only the only shift I would make for my client who are live w living with neurodegeneration or potentially. I don't know for sure always, you know. But in that moment I'll say, now, a couple of weeks ago, my recall of the session is we talked about uh downloading an app. Now I'm curious, is that something that sticks with you or not? Because I'm a little more cautious. Because I err on the side of I want to go back and figure out what are you bringing forward from a previous session.
That's actually that's a really good point. And as I think about it, that is I think what she said. It was like, Do you remember we talked about this? Like, do I need to prime you a little bit? And then I'm like, Oh yeah, we did. No, I didn't do it.
Yeah. And so your ability to go, Oh, yeah, now you're prompting me, that tells me you have a damaged area, but not a dead area. In a dead area, there's just you would go, I don't remember talking about it at all. And it's like, okay, so let's start by having a conversation about this. But here's what I'm gonna have us do. I want you to pull out your phone and here's what we're gonna try.
Because what I now know is I also have a problem with initiation and I also have a problem with decision making. And I have a problem with transition. And so what we do in the session has to have more of a living, breathing presence. that you're rehearsing right away. And we're going to go ahead and set a timer so it pops up that you at 10 o'clock it's going to say go to the app and start.
So that it gives you the structure around. And that um at least when I'm working with folks, that's something that turns out to be super important. And they can start to develop a stress they'll go, so so I need to put it on my phone. Show me where I put it on the phone. Which means I'm learn they're learning. They've got new synaptic connections and those connections are this is my friend. I need my friend to tell me things because I can't remember things.
What I remember is I've got a friend here. And they're not gonna yell at me. They're just gonna give me information. And so I have many people that I that I have relationships with um and support living with the brain changes of dementia that find they need a device Because people get impatient and devices
will repeat the same messaging. You can set an alarm and when it goes off and you go, Oh yeah, I need to get water and you lay it down and and it's like, huh, I was it was I doing something? Oh yeah, my hairbrush. And I reach out and I pick up my hairbrush and it's like, This needs to go in the bathroom. I mean and I'm moving from space to space and I'm not completing things.
And I don't know that. I mean, I I don't realize I'm not completing things'cause I'm always busy. And my partner comes home and says things like, What have you done all day? Oh my God, stuff is everywhere. What are you doing? With this facial and those that language.
¶ Caregiver Challenges and Communication Strategies
And it's like, ooh, I'm I'm wrong. I've done something wrong. Like I know you have dogs around you and it's like, well, you use that voice. Dogs are like, Uh oh, I'm in trouble. Alpha's upset. Oh boy. Oh dear. What did I do? I didn't I mean I and it's a sense of Failure.
Oh
of feeling like not myself, like I know I'm a competent person. Why what has happened? And then now I don't want to have the interaction. Um, that's not nice. I don't like it. And so I might get angry, I might get sad, I might self deprecate. I mean, the options are wide open. But so for the care person. I mean,'cause they don't know what they're doing either. No one prepares them. And there's no requirement for any training to step into this role. Uh carry.
If there were, if we were offering it to caregivers too, they're so strapped.
Because it's been it's been five years they've been dealing with this before somebody agrees that something is going on and we should be doing something about it versus we just need to tell her to quit worrying about it.
¶ Diverse Dementia Symptoms and Misdiagnosis
For our listeners, can you describe the air quote average experience for someone who is transitioning with dementia. How many years are we talking about? What kind of behaviors are we starting with? And the caregiver piece here. is just enormous and I'm sure for our listeners who have been in that role themselves or watched a loved one go through it with another loved one or a client, I mean it's just I have called it Fifty Shades of Hell. I mean it is just a special kind.
Especially since it's not something you wish or want for anyone. I mean that no one I mean, I don't think there's anyone in this world that wants another human being to experience dementia, brain change like that. So this is the tricky part. The general public, 95% of the general public, when they think dementia, they think Alzheimer's. That's it, that's all. And they think memory loss. So it's all about memory loss.
And in Alzheimer's frequently the first signals aren't even the traditional memory loss of I can't remember uh the name of the person. It's I can't hang on to new details, but old stuff is fine. I'm having trouble finding my way back from places. I can get somewhere, but hell I can't and that word that popped out. I start using little expletives in spaces that I might not have used them before, but it's popping out of my mouth rather than in my brain.
The automotive engager w the on the vehicle. You know what I'm talking about? Are you talking about the key for the car? And it's like, yep. And so I'm having trouble accessing language center words. And yet I'm incredibly bright and so I circumlocute. I work around the word by giving you very fancy words to describe something simple.
I I know the person that no, he came in here. I'm telling you. When he came in here, he looked at me. And I could tell by how he was looking at me, he wanted to kill me. I know he did. Now he covered it up. But I know and so some of the first symptoms for Lewy body dementia might be paranoia, it might be uh visual hallucinations, it might be some very atypical kinds of shit.
Which is bizarre.
Um and so it almost always is misidentified as a psychiatric illness or Parkinson's because of falls, because of inability to f yeah, having a as you try to do things your hand tremors a lot and you can't
Can't get
And then it goes away. And so, you know, the tricky so in answer to I guess to your question about um the first symptoms are so varied and yet because everybody thinks Alzheimer's memory loss, when we reveal, oh, we think it's brain changes that come with like frontal temporal dementia or um Lewy body or vascular dementia or um one that posterior cortical atrophy. Everybody's like, what's
fat first and then well well he's had those symptoms for a while. Are you saying that's dementia? I thought it was X and it's like mm yeah. So five to eight years. is not uncommon to have active symptoms of various things that indicate two areas of your brain are actively starting to die and still not have anybody notice.
And to tell you there's nothing wrong when you do go. And if you use more traditional testing, like MMSE, the pulsted, some of those, you'll really miss it, particularly for smart people. And you'll falsely identify people who maybe never got very far in school or aren't particularly good at testing. you'll get a false positive on them and you know, they're just not really good at that stuff and they never have been and we need to be really careful about this.
¶ Complexities of Dementia Types and Overlap
the majority of dementia patients Sixty percent Alzheimer's.
Fifty to sixty we now think. And a lot more are mixed. Uh what we're finding out is what starts with one dementia, it's like particol. And so other abnormal proteins start to activate. And if you have the right sort of chemical mix you can start to have Alzheimer's plus vascular, Alzheimer's plus Louis body. Lewy body plus um FTD, um ALS plus sweet body, M S plus. And so, you know, so we start to see some of the
some of the diseases that like you have, you have an autoimmune. Autoimmune and Louis body like to hang out together. Um, so you start with one and the other one can kick in gear. So it's that kind of phenomena where again we're cloudy in our in our appreciation for the complexity and we don't offer support when we could. I don't I don't know whether it's going to turn into dementia or not.
But what I know is you should be better supported than you're getting right now because now you're depressed, now you're anxious, now you're feeling left out, now you don't know what to do. You're having trouble. Yeah. And so I think I wish we would worry less about the diagnostic category and more about the support that somebody needs.
¶ Systemic Barriers to Quality Dementia Care
So on that, I live in the Portland, Oregon area, and in my experience having been through neurological care in multiple large health systems in different states, the major university centers here and other places are simply not taken. Any longer. And I would love for you to expand on that because again, this is one of those things that's like if if you've never had the occasion to think about it. You're not going to and then when you finally need those resources.
Like, oh, you have these generalized memory and cognitive issues, we're not accepting any new referrals. If you can even get that referral, and if you do, like we said, it's going to be months and months.
And if you're not careful, it's somebody who does this because, you know, they can. It's not their favorite thing to do. It's not their primary area of practice. What's happening at the university level is there's uh a lot more emphasis on on areas of neurology where there's something that can be the next step. uh there's something you can do that's gonna make a difference from a healing perspective or a fixing perspective. Um there are things that we can test out and try out.
that's gonna give us a really good picture of this is the direction to travel. And for all the work that we've done in trying to do that in the field of neurodegeneration and dementia, I would say we're still floundering around here a good bit. I mean people are making progress, but I mean I think it's pie in the sky to think we're gonna solve this very complicated, very multifactorial issue of brain change that's deteriorating.
um with a quick fix. And I think there's a lot more excitement about a quick fix. Even hearing people talk about prevention, we're gonna prevent dementia. It's like you're gonna reduce the risk. Let's be honest. You're gonna go diet, you're gonna go exercise, you're gonna social engagement, you're gonna environmentally make the air cleaner, you're gonna reduce risk. You're not gonna prevent somebody from getting dementia. So let's
I mean, it's good, it's all good. But if I get it, please don't blame me for getting it. It's not like I set out to break the norm. I you know, I've got some genetic coding that leads me that way. I ha made lifestyle choices. to be in supportive people that are complex.
I travel a lot. I do these things and yeah, I'm making choices. But I wouldn't have it any other way. I just wish it didn't end up that, you know, I might develop dementia. That'd be great. But if I do, I hope I have supportive people who know how to support me. And that that's not the case right now. What kind of actual demonstrated knowledge or skill do you have to have
to run a memory care residential program, a memory care home care program, a memory care uh agency specialty practice. What kind of expertise uh actually demonstrated knowledge and skill do you have to have in the United States?
If you're asking me that question, I haven't I know that.
ZERO
All you have to do, all you have to do is sit through videos playing. You do not have to answer questions. You do not have to demonstrate skill. You don't have to know anything about different dimensions. All you have to do is sit through videos. Now you can ignore them. But in certain states you have to you have to be present when they play X hours of it. You don't have to take in anything. And to me, that's wrong. And I'm I'm on the soapbox now, I'm sorry.
No, I actually I I really appreciate the soapbox because I think it is a critical part of this conversation. This is Scratching the surface of a very real situation for people with cognitive impairment. And we see the news stories. of people being taken advantage of and abused any number of ways. And, you know, we have uh an unequivocal mental health care and medical care crisis in our country. It's just going to get worse.
as we have a growing and aging population and fewer providers and you and I could talk for hours just on the complexity of the systemic issues. But so you have
You have groups that say, Here, we're a memory care supporter. And it's like and so I take my person I personally go there thinking, Okay, I'm gonna get some answers and the answer is Well, you need to put her on some meds. We can't keep her unless we medicate her,'cause I mean her agitation is really bad. And it's like, well, why is she getting quote unquote? Which is just a symptom. Why is she distressed? Why is she communicating distress?
Well, you keep telling her she has to stay when in her mind, I want to go home. I don't understand why I have to stay here. This is ridiculous. I have work to do. I have I have to go give a lecture. And then we say things like, Mom, that was twenty years ago. You haven't given a lecture in twenty years. That is an argument. Now, if I've always been the boss's mom and now you're gonna argue with me about what I have to do next.
This is just gonna not go well. Instead of going, whoo, I had no idea. So you were you were planning on going to do a lecture. Wow, I did not know that. I had no idea that was on your agenda for tomorrow. Let me do some checking because I do not believe there is a lecture scheduled for tomorrow. Let me do some checking because I don't wanna I don't wanna tell you an untruth, but to the best of my knowledge I don't think that one's still on the books. I think that one might be off the book.
Tell me a little bit about the lecture we're gonna give. Oh, you were gonna talk about marriage counseling. Cool. Now, is that an area that you so now I'm gonna go to where I can engage you where you have skill, where you have ability. Because what you just revealed to me is there is nothing here for me. I need to go to a place in a space where I have value. I want to make a difference in the world and I need that back. I need my life back. And so I can't reverse your dementia.
that I can surely acknowledge what you just said to me. I can validate you. I can say, ah, you thought, oh, you were thinking there was a lecture tomorrow. Now the way I do that with I mean, I'm not telling I'm not lying. Did I ever lie to you about anything in those statements? I don't need to. What I need to do is acknowledge you and hear what you had to say. I tell truth but not like a painful, awful I I say to the best of my knowledge, I don't think you have that lecture tomorrow.
I I don't it's the I mean I've looked. There's nothing on the books for you lecturing tomorrow. But what was it gonna be about? Because and then if you need more help, I'll go marriage counseling or something else? Because I know you enough to know your background. So if if that's the case, I'm giving you what you need. And then I've got to find out what's underneath this need. That's what good support to me looks like.
It's holding on to the window. Core the essence of the world. And the amount of burnout in caregivers, whether family or other, is extraordinary. And absolutely I've heard the example that you gave earlier, you know, of that hostility because we're frustrated. I've told you six times. Your meds are right there on the counter.
Those aren't mine. It's first time I'm hearing it. And rather than go, Wow, hippocampal damage. I can only go, wow, hippocampal damage if someone has informed me and I understand what your brain does for you and what it does for me and what you just told me is not working for you. And I can go. Oh, I am so sorry. I thought I said something. Tell you what, I apologize because I truly thought I had told you about it. I I mean, who knows?
How about uh would you rather have coffee or juice to take'em with? Because what I do know is if I don't move you into action, guess what's gonna be the case in a
Yeah.
If I want out of the loop, you want out of the loop, one of us has to lead.
as you and I are talking about this, I'm certainly aware that like every five minutes that we share could be its own like six hour training and then some. One of the things that happens can happen, you know, not always, but can happen in mental health care is a real hyper focus on improvement.
¶ Adapting Mental Health Treatment Paradigms
on adherence to a treatment plan and when it comes to many kinds of neurodivergence and neurodegeneration, that is out the door. Not always, but you know, every everybody's different. But it's a it's a different paradigm than when we were sitting in our post bachelor's training and learning about how we're going to treatment plan and how to assess improvement and smart goals. It's specific, measurable, attainable, realistic, time bound. Like This is a different landscape.
For mental health professionals. Specifically, who are working with people who may or may not have dementia. You know, and also I want to note too, as we're talking about this. What TPA is saying is also so applicable to traumatic brain injury, to as she said, uh autoimmune disorders, to uh Different kinds of chemotherapy and immunotherapies that can cause brain changes, of course, to other medical issues. So like it's not like it's
specific just to dementia. It's when this beautiful organ at the top of our bodies is not working. uh quite as it used to, um or quite as other people's might, as some majority, as Tpa had pointed out earlier. We're seeing that a client we've seen for years Forgotten a couple of sessions. And they're talking about parking their car and then not being able to find it, and that's happened a few times now. And there's been increased disagreements in the home because
our client is told that they're not listening and that they're not focusing, we start to see it. What do you wish mental health professionals knew at that stage?
¶ Supporting Clients with Emerging Cognitive Shifts
I'm gonna ask you for a big favor. I'm really curious, would your partner, the person who you partner with in life, in care and support? Would they be willing to come in and would you be okay with me asking them some questions? Um, first I want to have you guys think about us talking separately, me talking to you, me talking to them, and then I want to bring us together to see what we can figure out here.
'cause I'm concerned that something's going on for you all. And I'd really like us to start to come together rethinking relationship of a one-on-one to maybe looking at a triad because if you're finding these issues happening regularly, it sounds like we need to expand the team. Some to sort of figure out how you can get the support you need outside of our relationship more. And it sounds like perhaps
Your person might need some support as well. So I'm wondering if it's time for us to take a step back and look at How do you get what you need beyond our one on one? Because it doesn't sound like it's really meeting your needs as well anymore.
When I someone with whom they live.
Wow, I want us to start looking at if something like this continues Who would you turn to and where would you get support? Because if we don't have that worked out, it's time for us to start figuring this out with you. While you can do this with me. Um, because I want to know who you might be interested in working with. And if the answer is nobody, wow. I'm concerned about what's gonna happen.
¶ Navigating Referrals and Systemic Biases
Is your first referral beyond inclusion?
Primary
Depends on the primary care provider. If um the person has already said, I've tried bringing it up, he says, you know, what do you expect you're I mean, and this is particularly the older you get, what do you expect you're eighty two, what do you expect you're seventy five? You know, you have three kids. What are you expecting?
I mean, you're working so hard, you have two jobs, and it's like I'm expecting my brain to have work be working the same way it was working two years ago before the auto accident where you said there was nothing really wrong with me. But we never did cognitive testing. And now I'm really starting to experience some shifts where I am finding it so much harder to do things. And it's like so it depends on the primary provider, to be honest.
Because if I have someone who's already is in their mind, they say, you know, she complains about that all the time. It's like, mm, that's not where I want to go then because I have somebody who's not listening. If I have somebody who's really responsive, it's exactly where I want to go. And I want us to have a conversation about we're starting to see some shifts in how things are happening on a daily basis.
This is not like once in a while. This is becoming a pattern with consistency. Which means we're way too late. I mean, we're way further in this than I'd like us to be, but that's what's happening right now.
In those moments for me as a clinician. where yes, a a client who lives alone has brought it up to primary Those are the moments where we have the option of really leaning in and kind of going a bit more into case management of like, let's look at your insurance benefits. And let's see what other providers are available. Let's get you another opinion. And I think the other part of this that is. really important. We operate in a medical system that is known to have biases with certain groups.
And that makes it much more difficult for a black woman to get the care that she needs.
Somebody who's bisexual, somebody in some settings that has different um religious beliefs. I mean you in different parts of the country, different parts of our world, um, if we walk into this system knowing there's already bias. This is a really scary place to find yourself as a person who's experiencing this, so boy do you ever need someone to stand alongside you and to advocate.
¶ Key Resources and Peer Support Networks
Here we are talking about the lack of research. Can you share with us what are some particularly when deficit is becoming more When you have somebody who's living alone, somebody who has a socioeconomic situation that is not ripe with possibility here. Like what wraparound is available to them and of course every community, every state is different, but just to give our listeners kind of a a quick rundown of like here's some of the stuff you can grab to try to help.
Yeah, I think um right off I would say check out what peer support might be available to you because for people who are living with some brain changes, they're people are starting to go, wait a minute, you know what I know who the experts are. Talk to us because some of us who got in early are very familiar with what works, what doesn't. Um and so we have friends, we call them our core team, people who are still advocating and are available and support their mentor group.
uh where they participate with neuro neurodegeneration. Louis Body particularly or uh F T D groups. I mean so there are groups out there where people who are living with it are active members and and leaders. Um Dementia Minds is a group. uh, that's out of Michigan. That's a national organization. It's founded by and and supported with people living with various brain changes that are dementia or dementia related or dementia.
nearby because you can go in like, oh look, I've got a new diagnosis this month. I just went in, they found they decided, nope, what I have is this. And it's a place where you can really talk openly and safely, uh, with other people. There are also area agency on aging. You want to make sure that you're talking to somebody in confidence and you may want to really look at
I don't have a care partner. I am my own care partner. I need to be able to talk to somebody who's knowledgeable about systems. But I am going to be my own care partner for right now because I haven't got someone else. I need to find out what is available to me and for me. Uh if someone's a veteran or there's a possibility that they might have benefits. Super impression.
Important.
to lock into that really early. Um, things like PTSD, obviously, predisposed toward development of dementia, head injuries predisposed. So hooking in and latching into those systems. what's available. Um and I have many friends who start off with I have a friend who's living with dementia and they're curious about resources. But what I'm talking about is myself. But the way to feel safer in the system is to say I'm a care person for.
And I'm just gonna be honest, people do it because they wanna hear what the other person's gonna say, thinking you're the care person versus the person living with and if there's a big difference then I know that's not a place I wanna go further. Because they see me as Oh, good job. I knew you could fill that in both. Um so I mean that's a starting place. Where I don't necessarily national organizations that are set up for caregivers
I'm cautious about as a first line, if I'm the one living with the change, I want to make sure who I'm talking to feels safe to me. Um And it could be those organizations. I'm not saying no. I'm just saying my experience is we want people to be thoughtful about getting into those situations um and becoming strong advocates and then after two years You're off because we can't trust your brain anymore.
And it's like
Once you're an advocate, you're an advocate. We may n me we might talk about how you're gonna advocate and what's gonna happen, but you still have a presence. You still need to be present if you wanna be present. Um with what support Yeah, I have people living on their own. It's like you're wow. Okay, see your risk taker. You understand the risk. And like so and so one of our friends will say, I drive with somebody else's eyes on me at least once a week.
If they tell me I'm not gonna drive any more, I know I will argue with them, but I also know that I trust'em enough because we've been in this relationship long enough. When they tell me no
It means I can't drive anymore. And I'm gonna argue. I'm gonna tell'em I'm gonna argue. I'm gonna tell'em to hold their ground and it will hurt um because I don't wanna give it up because it means independence to me. But I also know that if our relationship is strong enough and it is, because we've built it, um, that I'll listen.
¶ Biomarkers vs. Lived Experience in Diagnosis
When someone gets in with primary care, in a perfect world a primary care doctor that is amazing. Let's say best case scenario has a chronic care team to support. This is a whole separate conversation, but can you expand a little bit on Testing reality. for dementia because it's part of the confusion that happens around these kind of
So we have what are called biomarkers, which people like want to live and die by. But in fact, if I'm talking about how do I live my life, my biomarkers and how I live my life can be two very different if the nun study way back when did nothing else, it really helped us understand, wow, when we look at the brains of people who have died and we can take a look at that, huh?
Some people who look like they were fine through their life. I mean, they did really pretty well. I mean, they were still doing things the way they'd done'em a lot. Their plaque was crazy and the shrinkage was a lot.
Wow.
Um, and then people who hardly had any shrinkage at all. Wow, they were hardly functioning for a long time. And it turns out that yeah, there's relationships, but it's super complicated. Um we do know that there are biomarkers now for Louis body, there's biomarkers for FTD, Tau pathologies, but all of this is sort of yeah, but And so I think the biggest missing piece in clinical practice is, let me ask you this question.
Um, is your daily life being significantly impacted by what's happening for you cognitively and emotionally and socially? And if the answer is yes, and we've explored everything else. then I'd say you're living with neurodegeneration because and we need to acknowledge that. Um and it's not MCI, it's not mild cognitive impairment. You're feeling those shifts and changes. And our definitions are so mucked up. Um that it's really hard for people sometimes.
Because people can use it as a weapon, they can use it as a tool. Um I mean, she's severely I mean, on her profile, she clearly is severely impaired and it's like, okay, well watch what we do together. And it's like How did you get her to do that? And it's like, well, with the right support in place and the right cueing and the right props and the right call-up, I can get parts of her brain to activate that you can't do that in the office.
I can get her Sarabella rhythm section to do the motor memories and I can get her doing things. It's like that's why she can dance. That's why she can put the groceries away. That's why she can do that. You turn around and you ask her, can you go put the groceries away? Huh? And it's how we offer support that matters. But the problem is if I don't train somebody else to do it.
And that person doesn't appreciate. This is the response that means she got the cue. This is the response that means she didn't get the cue. I've got to get, if we aren't willing to accept, we're going to have a role in this. And the role in this is not one and done.
It's not, here's the instructions. Uh, I'll see you at your next session. But it's okay, so here's the instructions. Let's get, let's try them out. Ooh, okay, let's I'm gonna take this one off because this one looks like that one doesn't work for you. Let's try this. Okay, now we got it. Okay, who can we bring in that you can work with to rehearse this fifty times?
So we can see if your synapse can form on this one and can get into long term storage, even though we can't hold it in short term. I can get it in a long term storage unit, and now you can use it.
¶ Cultivating Human-Centered Care
Sometimes these changes are slow. Sometimes they're alarmingly rapid. For clinicians, I mean we have such beautiful and intimate relationships. with our clients and obviously we have a lot of About What are some of the most important things that a mental health professional can do beyond the case management side of things? So making sure we have the right referral. to work around different systems, things like that, but like the human piece, like what do you think is missing?
Um, I think we're too willing to use words like agitated uh somebody's you know, sh she needs something. Um, you know, he doesn't know what he's talking about anymore. And he doesn't communicate. I think we're too willing still as as professionals to use those words. Until we get those out of our vocabulary, we do not serve our clients. I think we have to be able to say with all sincerity, wow, she is really trying to communicate with you. And and what's happening is
She really feels you're not listening. And I get that what she's asking for is totally illogical. That's not why she's asking for it. She doesn't mean to be illogical. She's really hurting. Um, she's not uncomfortable, she's hurting, and she does not understand. Because of the disconnect between her body and her brain that what's causing her pain is constipation. She has no idea. She's asking to go home because it's a safe space.
So, no, she is not having a baby. But what she's describing to you is the distress she's in. So if someone were having a baby at this point. What would you do with them? I mean, could you let go of where you are, clinician, to come and be present with the person who's lost on the island and be present and then find the bridge. Create the bridge, build the bridge back for the two of you to come back. across that island, back over, St.
So that they're not alone. One of the worst things for people from all my years, forty six years, is when I feel like no one And no one cares and no one hears, and you assume I don't hear you. I hear. I hear how you feel about me. If not us who people who are getting a minimum wage and are taught tasks from the day one and just believe that people living with these brain changes just do this stuff. You have to be prepared to be hit.
it's okay to take three people into a shower unit. That when people don't want to take a shower you'd make them. That if they don't want to change their clothes you'd just take the clothes off. even if it takes multiple people not realizing and not knowing that there was physical history, trauma, fear. I mean it happens daily throughout this country. And we call it care and it's not it's abuse or it's neglect, but it's not.
I'm hearing the importance of maybe check-ity checking our clinical adherence to the idea that some symptom has to be improving in order for somebody to benefit. And that's a real paradigm. Like it it's very different than the world that many of us were and are still steeped in. And I love that we come back again to just the power of sitting. experience and I also loved your question of if not us then.
if we are not willing to stand on that space and say, Whoa, pause. Let's whoa, hang on a second. Um, what's vital about dunking or sprinkling someone? Could we get somewhere with a wet wipe on pits and crops? Is it possible to help remove bacteria? Is it simply that you want her to look like she's looked historically? Or is it that really she needs to be placed in a shower for what purpose? That's uh
What is she telling you she needs right now? She's scared. Who among us could be her friend and say, I know you don't want them doing anything? Tell you what, if we can just get this and this dealt with, I can get'em to back off. Can we try it? Having someone stand with you for who you are. And remembering it's me, my body, myself. Yes, I'm making mistakes, but I'm a risk taker. Um, I'm making mistakes, I'm a safety seeker. I'm not feeling safe. How do we
Shift that so that you do feel safe, so that you can take the risks you want to take. I mean if they I mean, it isn't the decision I would make, but it could be your pattern of lifetime. But I need to know that.
There is So much he for mental health purposes. This case adjunct working alive. A perfect world someone like you is an occupational therapist and many other professionals, right?
Perfect world.
We'd have neurology, we'd have primary care, we would have uh cognitive therapy, we'd have lots of different things. Um
Pet therapy. We both kind of
Oh gosh, yes. Horticon.
We'd have music therapy, yeah.
¶ Additional Resources and Contact Information
Yes. What books, resources, websites, podcasts, like what are the handiest for our clinicians listening that are like, I I wanna step up
Yeah, I mean if you're looking at what what kind of things we have available you could go to info at teepasnot.com and if it's not us, we we certainly know where people are and what kind of resources are out there. And we are more than happy to share what we what we've experienced. Um, we've done a number of things with the different groups so we know sort of what they have, like Alzheimer's Foundation of America, Louis Body Association.
So there are numbers of places to go, but if you're just like, I don't know what to do at this point, I've got someone I'm really concerned about. Let's have a conversation. I mean, we do that conversation without there's no fee charged. Um, we really are wanting to support people who are making a difference in individuals' lives or want to. Um, because if we don't have what we need we can't serve well. And I think our biggest problem is
People ask us to serve but they don't give us what we need. And it's like, Well, how can you do well when you don't have what you need? I mean it's like, quit sending me out there without my tools. I I need some tools to help me out here.
Thank you. caregivers, um as well as uh content specifically relating to neurodegeneration. And there are the resources out there. It's just a matter of finding them, looking for them. Uh Teepa, you said the best way for people to get in touch with you would be to go to uh your name.com. So teepa snow, that's T-E-E-P-A-S-N-O-W dot com.
We have all ki we have uh we're on YouTube, we have TikTok, we're on uh you know, you name it, Facebook. We try every way we know because we have different um audiences. And we have different age audiences. I mean, my youngest client was seventeen, plus some kids who developed a dementia due to genetic causes. Um, and my oldest client was 102. So we know that different people have different ways of accessing data and and making use of it. Phone calls work, um, text works, email works.
I mean we know that there are different ways that people communicate.
Professionally and personally this Thank you for coming on, taking time to share your immense expertise and also vantage. a beautiful thing when we can offer that to our clients thinking. your glasses.
Thanks for the opportunity.
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