The Memories Podcast

Jackson Nguyen (00:04)
Hi everyone, welcome to the Memories Podcast. I'm your host, Jackson Nguyen, and I'm a biochemistry senior at Worcester Polytechnic Institute in Worcester, Massachusetts. I am also a trained community representative of the Massachusetts chapter of the Alzheimer's Association. Memories is a podcast interview series that features in-depth one-on-one conversations with leading global experts across the globe to explore Alzheimer's disease and dementia,

from numerous lenses. Through these conversations, I hope to deepen public understanding of AD and share the voices of those making a difference across the globe. Memories is a personal passion project of mine where I hope to engage in fruitful conversations with experts to learn more about Alzheimer's and dementia and spread awareness of its devastating condition to my local and global community. Thank you so much for joining.

Jackson Nguyen (01:01)
In today's episode, it is my pleasure to welcome Dr. Beth Nolan, who is a Chief Public Health Officer and Lead Mentor, Trainer, and Speaker for the organization Positive Approach to Care, founded by Teepa Snow. She was formerly an Assistant Professor and Senior Associate Director for the Evaluation Institute at the University of Pittsburgh Graduate School of Public Health. She holds a doctorate degree in Applied Gerontology

at the University of Kansas and master's degrees in human development and in applied behavior analysis. She completed her postdoc training in geriatric psychiatry at the Western Psychiatric Institute in Pittsburgh, Pennsylvania. There she has worked with numerous human service agencies focused on behavioral health, criminal justice, medicine, and senior living. It is remarkable to have you here, Dr. Nolan Thank you so much for joining me.

Beth Nolan (01:51)
Well, thanks, Jackson It's nice to be here. It's nice to meet you.

Jackson Nguyen (01:54)
Thank you so much. Before we dive in, do you have any particular questions for me or anything you'd like to add before we get started?

Beth Nolan (02:00)
No, that was comprehensive. So basically you're saying I just went to school for a really long time because working in the real world is, know, is not necessarily as fun and exciting as being in school. So yeah, the rest is the kind of fun part you get to learn later on, right?

Jackson Nguyen (02:08)
Mm-hmm.

First, I want to start a bit more personal before we dive in into your incredible work in dementia care. How are you doing today? what have you been up to lately?

Beth Nolan (02:26)
Well, I had a chance this morning to talk with somebody in Ireland that's putting on conferences and we realized we had tons of connection. It's a, I had a chance to drive across Iowa and Nebraska the last couple of days and meet with communities there and do training with families and staff. And, and that's what we do. We travel across the world and get to meet people in their life who are living with dementia, either personally or professionally and support them. So it's kind of fun.

Jackson Nguyen (02:55)
you've worked in numerous fields, in mental health and autism, to gerontology, senior living, etc. Now you predominantly focus on dementia care. And so I'm curious, what drew you to this field specifically? Was there like a light bulb moment that sparked your interest in this field?

Beth Nolan (03:13)
You know, it's interesting. I've always, my training in behavior analysis, there's the tenant with behavior analysis that has to do with all behavior has purpose and meaning. That's what I learned working with people in a neurodiverse field. And that to me is kind of that driving force. Whatever I'm doing as a person, I'm trying to meet my needs. I'm trying to do the best I can with whatever I'm.

feeling, seeing, sensing, wanting to do. And I think that when it comes to dementia, that wasn't a leap at all. So we know that people living with autism are many times responding and trying to manage stimuli that my brain doesn't focus on. I don't hear the humming of the lights. I don't hear the wind out in the trees. That's not something that my brain focuses on. And yet if I have...

autism, my brain will hear that and it becomes a major sense and I'm trying to manage that along with all the other things that you think I'm trying to manage or deal with or do. Well, in dementia, it's very similar. So I think what drew me to dementia is we're talking about brains that are changing, but it's a person that has this entire lifetime for many people.

that have got tons of experience. I've got, I'm not a developing or a child's brain. I've got all these skills and abilities. But as my brain changes, you expect me to be exactly as I was before and yet I'm changing. And that's the part that makes it to me so much more exciting because people are just rich human beings and how they engage in the world. And I think it's just.

Every time I interact with somebody living dementia, I learn something. Every time I interact with somebody who's a care partner in dementia, I learn something and that's the part of it. I can always get to learn something new.

Jackson Nguyen (04:49)
Mm-hmm.

Definitely. And I'm wondering what is like dementia beyond the disease itself, what does that personally mean to you?

Beth Nolan (05:01)
What does it personally mean to me?

I guess it comes down to like that mission idea. How you've broadly scoped that question is like, when it comes to dementia, I think about...

Every human being needs purpose and meaning. And if I have a title, a label, that people look at me and automatically think that I can no longer choose because I don't have the capacity, that's just, that to me is a human rights issue.

That is, I as a professional don't have the ability to figure out how to help you continue in that autonomous role of whoever you are as a person that you have a right to be. And it's on me to make that change and support.

So for example, getting it back to something that we can equate it to growing up in the seventies and the eighties, if I came across, well, let me back up to the experience I recently had. was in the grocery store and there was three of us making our way through the produce section. And I heard this high pitched male voice scream out and continue to scream behind us. And it was incredibly loud and startling. All three of us strangers turned and looked because we're not stupid. In fact, that's the way our senses work. If we hear something, we want to get more

data so we will look even if it's like a hear it on the other side of a wall. Whatever sound we hear draws our eyes. So we looked and all three of us saw similar things that we took in this data and that was a man about in his 30s who was doing the screaming and there was a man that looked similar to him but older.

holding a plastic bag and said, nice, one more. And the man who was yelling was putting the lemons into the bag. And he said, great, go ahead and twist it up. Perfect. Let's go. What's your takeaway? What's your assessment at that moment of what that may have been going on with those two individuals?

Jackson Nguyen (06:45)
I would suspect some sort of mental issue going on with that person.

Beth Nolan (06:49)
Yeah, some cognitive thing could intellectual disability, be autism

specifically. So all three of us strangers made the same assessment and we turned around and went about our business. We checked our brains said, danger screaming. We turned and looked, took in the data around us and said, ⁓ reasonable logical conclusion. This is not a danger. It's none of my business. He has a right to be in this here in this grocery store.

Jackson Nguyen (06:59)
Mm-hmm.

Beth Nolan (07:14)
He's got probably dad. We're good. I can't say that that would have been the case when I was growing up. I'm guessing one of us nosy person would have gone to the manager of the store and said, well, this isn't appropriate. This individual was yelling and screaming in the grocery store and that was going to scare people and they need to be, they need to leave.

So as a society, we have changed, we have grown, and we have broadened our space. We're nowhere near where we need to be, but we've broadened our space to recognize people with diverse brains deserve to go to the grocery store. They deserve to live life. The intellectual disabilities world has

parents as a child or a baby and a child that said, am no longer going to lock my child away because you're uncomfortable with the sounds this person makes. That's not okay. And people with intellectual disabilities are saying, yeah, I've got an opinion here too. I think we're at that place maybe when it comes to dementia, that it's not like one day I get a diagnosis and suddenly I'm not allowed to make any decisions and I can't make any decisions.

That's the assumption that people make if you have dementia. I don't know. I don't have the skills to figure out how to interact with you. So therefore I don't. And I am solely and completely focused on one thing and one thing only and that is keeping you safe. I will also try to keep you happy, but my goal is to keep you safe. And that's my responsibility now. I am taking that on because of this diagnosis. But what I'm finding is that, well, just like any one of us,

We have things that we're allowed to do. You and I as adults, we're allowed to make mistakes. We're allowed to eat bad food. We're allowed to not exercise. We're allowed to, well, we're not allowed to speed, but we do. We actually make really dumb choices in life and no one really.

has a right to come and say, now you shouldn't have that cookie, Jackson. I mean, it's absurd and even I can see your grin. We're recognizing that we're adults and we have the right to make bad choices. And suddenly when I get the diagnosis of dementia, that right is taken away from me. Like the next day. I'm no longer seen as an autonomous person. And that's not okay. If we had the skills to be able to interact, if we could recognize what is

Jackson Nguyen (09:11)
Mm-hmm.

Beth Nolan (09:28)
just uncomfortable for us. What is risky versus what is actually dangerous to life and limb? We could start to parse out where someone could make riskier decisions and support someone in independence. That's gonna take time. That's gonna take the training and the skill that's necessary to work as we have slowly been figuring out as a society to work with all neurodiverse brains. Kind of a long answer, but.

Jackson Nguyen (09:49)
Yeah, because I completely agree with you in terms of that because like the word dementia itself carries a lot of stigma, I would say, because myself, when I volunteer at this dementia nursing facility called Christopher House. And what I observe is that we a lot of times, you know, we try to help or the staff try to help the elders, like thinking.

yeah, they cannot hold a knife, they cannot hold a fork because it's too dangerous for them. But like, I'm wondering, like, where is that line between, you know, giving them that independence, but also, because we thinking like, yeah, because of their cognitive issues, they can no longer do it. But is that really the case?

Beth Nolan (10:28)
And I think that's a great example. I mean, there's this idea that all the dementias, so we're talking about an umbrella term, right? The 200 plus forms and types and causes of dementia that fall to that umbrella, that we're equating that to almost a mental illness. And it's not the same way that mental illnesses are different from intellectual disabilities.

We wouldn't assume that if you gave a cutting knife to a person with Down syndrome, that they would automatically turn it on the person around you. The also reality is that we're talking about myths. There's this myth that if I give a knife to a person with a mental illness, they're going to turn it on me too. And that's just not the case, generally speaking. And same with the person living with dementia. How I use my world. You're right. We start to think we should wrap people in bubble wrap.

And that's just not a way to live. But I think the other part too has to do with what is dementia, right? So if we know dementia, the truths of dementia, all forms, if you actually get something that falls under a diagnosis that falls under that umbrella term, that syndrome, it means that at least two parts of the brain are dying at any time. That's just the case. The other truth is that it is chronic. It's not something that I can fix right now.

We've got some drugs out there that are starting to change a little bit about the neurological cell death that happens, but we're not at a place where we're actually changing the full trajectory of this disease anywhere close. The other one is that it's progressive. It's going to change and continue to change and get worse. But I think the thing that is ignored in conversation that really can help people take a deep breath is that no matter what

one of these diseases we're talking about under dementia, we're talking about terminal illnesses.

And how knowing that, if I'm interacting with somebody that I know has a terminal illness, we tend to take a pause a lot of times when we think about if I know I have a terminal illness with cancer, let's say, we tend to begin to weigh what we want to do with that time differently. And if we're not willing to face the fact that we're talking about terminal illnesses, are we taking away this idea where we can have that conversation?

How do you wanna live? So I don't know if your audience knows like how many years we're talking. Like, cause we are talking about two different, a hundred different types of diseases, right? So have you heard like, what is the standard going number of years that people live with dementia or can live with dementia?

Jackson Nguyen (12:58)
believe it's like from 8 to 20 years.

Beth Nolan (13:01)
That's what hear too. It's like that seems to be the range now. I actually like that one. It used to be a little bit narrower. People talk about like about 10, you know, seven to 10 years or something. But we actually know people that can live up to 30 years with some form or type of cause of dementia. There are some like the prion diseases, like think mad cow disease. There are some that are much more aggressive neurologically. And there are some that are very much a slow roll. What we're finding

Jackson Nguyen (13:04)
Yeah.

Beth Nolan (13:27)
is that the major change in that is whether or not someone has purpose and meaning. If you have and feel like you are having value on this earth, if you are a contributing member to society, if there's something that makes you happy, if you have people around you that believe you, that respect you, you actually have less of a cortisol dump, you have less of a stressor on your brain and body. And with purpose and meaning,

with social engagement that I like, want, and need, well, when I'm getting my needs met, guess what? I live longer. So I think that that's a big piece there. I would love to have and see the day when anyone who has delivered a diagnosis from a neurologist, from a primary care provider that says, here's your diagnosis. Here's your, tell me a little bit about what you know about that.

Jackson Nguyen (13:59)
Yeah.

Mm-hmm.

Beth Nolan (14:15)
that pause conversation moment, that people are respected enough to be, to check in with a provider and know that we're talking about a terminal illness. But then when the question comes back, what do I do now, doc? That the answer is in the form of a question, and that is, well, what do you want to do? What did you plan on doing in retirement? Do you want to travel? Do you to be with your grandkids? Or even more so for people with younger onset?

What do you want to do with your life? Right now is a time to grieve, but let's get you hooked up with social services. Because what we do know, if you're going to be living with something 10, 20, even 30 years, these are not just medical conditions. These are life conditions. And if we're not looking at how we build life in this new normal, that's the piece that I think we're missing.

Jackson Nguyen (15:02)
I see. So ultimately what you're trying to say is that with meaning and purpose, like a person with dementia, if you even take out that's like even with even with the condition, that person can still have like the same or even better quality of life compared to someone without it.

Beth Nolan (15:20)
Yeah, and I do think that that's really easy. There you can see my uncomfortable. It's like it's like, yes. And yet I don't have dementia. I think it takes work. I think about my friends that have found purpose and meaning after dementia, that have found life after a diagnosis. And every one of them has found something that they want to do. I have one friend that he and his wife, who actually they got married after he got his diagnosis.

Jackson Nguyen (15:27)
Mm-hmm.

Beth Nolan (15:47)
They travel constantly and they set it up so they can not tax the brain and the body, because there are changes and things we need to support with these diseases, but they travel constantly. I have another friend who does just tons and tons of talks and advocacy worldwide. I have another friend living with dementia and his focus is like really just being with his grandkids and being the support so then his adult children can do their jobs and.

is such an integral part of their lives as his dementia is still present. Every single person that I know is with somebody that's a support, care partner that supports them, but is also getting something from that relationship too. So yeah, but I also think there's also a place of grieving what is no longer. And I don't want to say that lightly that, yeah, just give purpose and meaning to you, know, then you can live your life. It seems...

presumptuous of me not being somebody living with dementia. You know what mean?

Jackson Nguyen (16:44)
Mm-hmm. Definitely.

now I want to go back into that terminology of dementia. Because like you said previously, dementia is comparable to that terminology of cancer. especially, I feel like a lot of people, mix up the word Alzheimer's and dementia, thinking of it as synonymous, as equal, like the same thing. Like basically, like you said previously, with how it's like

Beth Nolan (17:02)
Mmm. Thinking of the equal.

Jackson Nguyen (17:10)
basically comparing between breast cancer and cancer, saying, comparing the same thing. your thoughts on that.

Beth Nolan (17:18)
Yeah, it's interesting. I can't imagine being in a world where, let's pretend for a moment, take that analogy of cancer, right? Can you imagine if the whole world, all they talked about, media, medicine, whatever, all they talked about was breast cancer and you had liver cancer. If the world is so focused on a cure for breast cancer, how would that make you feel as a liver cancer patient or a person living with liver cancer?

I mean, I'm wondering about this idea that when we only talk about it as Alzheimer's and yet there are 200 different diseases that aren't Alzheimer's, it's because it's the one we know about the biggest and people are using it as a shorthand to talk about, well, everybody knows we're talking about dementia. And I just haven't found that to be the case.

People are saying, if all you hear when you come into this world of awareness is Alzheimer's and dementia, does it sound like they're two different things? it sound like they're the same things? I don't know. So the shorthand I've heard again and again is Alzheimer's and other forms of dementia. Well, what if we just start saying dementia? And what if we just say people living with dementia?

as is the term that people living with dementia have asked to be used. And from there, we're being inclusive. Because here's the crazy thing. If I do get Alzheimer's, my brain is at greater risk of getting some other form, or cause of dementia. So even then, most people are living with a mixed dementia at some point in their life after they get dementia, after they get specifically Alzheimer's. Even more so, we're seeing across the board.

Most individuals that we work with that are let's say nursing homes, their chart just says dementia. Can you imagine going into a medical providing community and a medical chart just says cancer?

Jackson Nguyen (19:01)
Yeah, it's like really broad

Beth Nolan (19:03)
It's like, it's almost silly, right? So take this as an experience, right? So if a friend came to you and said, with this tone, with this mood, so guess what? I have cancer. What would you say?

Jackson Nguyen (19:05)
Mm-hmm.

Like what type of cancer? Like where is it?

Beth Nolan (19:15)
You would dive into like,

what type? Why do you care? It's cancer. Why do you care?

Jackson Nguyen (19:20)
Because when I think of the word cancer, I feel like if I personally were to get cancer myself, I feel like my world would turn upside down. It's like something that's very dark and it's like basically, it depends on what stage you're at too, but like... ⁓

Beth Nolan (19:20)
Why do you care? Yeah.

so it's the type and the stage that really matter, doesn't it? Why? Why is it? Because you talk about it as a dark, if it's just cancer, it's this dark place, where does the light come in? Potentially.

Jackson Nguyen (19:36)
Yes.

The light comes in, depends on which stage you're at, there could be treatment options that are available at that stage. Like for example, like chemotherapy or other treatments options. like, but like if someone were to be diagnosed, let's say with stage four, it's like, you know, there's like not really any much hope left per se

Beth Nolan (19:56)
surgeries or yeah.

Yeah, so, and we know stage four cancers for many people as well, we're recognizing as we are able to treat different forms, types and causes of cancer differently, stage four isn't even a death sentence anymore. But it really does change the conversations. It changes our reactions. It changes our understanding of what this person might need or want, right? And if we are handicapping ourselves,

and not even as a provider saying, let's talk about some options. Let's talk about what this means. Let's talk about how and try to figure out what type of dementia that you're seeing. Similarly, how does that change the conversation, right? So if I know someone may potentially have a much shorter lifespan,

How does that change our relationship? The things that I might be deciding to let go of, how I choose to spend my time, how I more focus fully on what this person may need. It changes everything, doesn't it? And we're not doing that in dementia necessarily. So much so that we're also talking about a field that isn't as advanced in terms of treatment and care and support as cancer. So.

It also then becomes an individual decision. Boy, for many of us, if we got a major life altering disease, wouldn't we want to know what type it is? Now, that's not necessarily the case. I don't want necessarily people to hear this and think, ⁓ well, my mother is living in a nursing home who's bed bound at this point, is, you know, hasn't really spoken very many words very often.

Jackson Nguyen (21:26)
Definitely.

Beth Nolan (21:40)
Do we want to take that person and put them through a battery of tests to figure out what type of disease that they have? It really becomes an individual question, as would be same options that I have to choose if I get some form type or cause of cancer. Yeah, matters, doesn't it?

Jackson Nguyen (21:57)
previously you said there are over 200 different causes of dementia or but like I feel like in terms of vascular dementia, Lewy body dementia, Alzheimer's, I feel like a lot of those symptoms overlap with each other. Would you agree or are there distinguish like differences between them that would help let's say a physician to make the diagnosis?

Beth Nolan (22:13)
Yeah.

huge.

Yeah, it's great because I think those two things can be true, right? So they are truly different diseases and the way that they attack the brain is very different. So for example, I have a her memory who has lived for 15 years with Lewy body dementia. And one of the things that's never been affected is her memory

the movement disorders have a much greater impact on your visual perception, your sensory motor strip. Some frontal temporal dementias have a huge impact really early on in language. So how I do word finding looks very different. So most neurologists, many professionals can't interact with somebody and have a guess about what dementia this might be. If someone comes to me and presents that

They have visual hallucinations about little tiny men that run up the border of a corner of a room. I'm immediately thinking Lewy body dementia. Is that definitive? Absolutely not. So we've got some overlap. Someone living with Alzheimer's may also have visual hallucinations as we sort of term them, but it's actually a little bit different functionally. So someone living with Alzheimer's, my brain has the ability to confabulate or lie to itself. We can think about this the same way.

Have ever had like a sleepy seat in your eye, like a floater in your eye? And you see it, right? So you immediately turn to look at it and it goes away. What does that tell your brain at that moment? is.

So you ever had something like a little, like it's a fuzzy little thing in the corner of your eye, almost like a little, like an eye booger, right? And when you see it, what happens to you? When you see it the corner of your eye, when you see something fuzzy out of the corner of eye, what do you do?

Jackson Nguyen (23:48)
Yeah.

Mm-hmm. Yeah.

you would try to like get that off.

Beth Nolan (23:59)
my eye. Okay. And then you try to get it out. Well, it's not always easy to get out. It's something you sometimes you have to rub your eye. have to, so you have to figure it out with your sensory motor strip. And so the point, you don't hurt yourself, but what if my brain and my body can't quite figure that out? I do that and I look away and I think, my gosh, is there something over there?

Jackson Nguyen (24:02)
Mm-hmm.

Beth Nolan (24:19)
So we've actually had this situation where, you know, it's at night, it's dark, the wind is blowing, you go downstairs, you hear something, you're convinced, my God, there's something in the house. We can actually fool ourselves. But in truth, as an adult, you begin to breathe and you go, okay, it's probably just the wind. You find reasonable and logical conclusions to why that thing is, and chances are I'm not actually in danger. Or is that floaty in my eye?

a person looking through the window because now I look over and it is night and I see there's a vague reflection of a face. my God, there's somebody looking in my window. Each one of us would then be able to parse out exactly what's going on and come to a reasonable logical conclusion. My brain and my body and dementia and an Alzheimer's specifically can lie to it. And so I start to look like maybe I'm having hallucinations, but it's really not the same as somebody living with Lewy body that sees children at the end of the hallway.

Jackson Nguyen (25:09)
Mm-hmm.

Beth Nolan (25:10)
So how people describe, how curious we can be as care partners to sort of parse out what the person is experiencing. It all has to do with the first place is I believe your experience. Tell me more about it. And if we're not willing and comfortable to say and lean into that thing that's uncomfortable, somebody saying, see animals in the kitchen.

Jackson Nguyen (25:33)
Mm-hmm.

Beth Nolan (25:34)
And if I can't

comfortably say, wow, you see animals in the kitchen. Tell me more about that. Is that concerning to you or not so much? I can figure out whether or not someone's distressed. The other reality is as Teepa found out, working in a nursing home one time, lady with a walker came out of the kitchen area and said, no, there's a snake in there. And all the care providers, all the nursing aides said, oh, wow, yeah. Believing her, affirming it.

Tifa went into the kitchen and sure enough, there was a snake on the floor. So the reality is, that is it possible that there is a small child out at end of the hallway? Is it possible there's someone looking in my window? Can I believe you without elevating this and escalation? Can I be curious at all times? That's the thing about all the dementias that we can definitely look at. But yeah, they really are very different, like you're saying, how it manifests, how the symptoms sort of progress.

Jackson Nguyen (26:04)
.

Mm-hmm.

thing.

Yeah.

Beth Nolan (26:27)
how our bodies

and brains work together as different parts of the brain are affected differently, that becomes a big deal.

Jackson Nguyen (26:32)
I'm actually wondering, because literally when you said, with that snake on the floor, because when Teepa actually came in, ⁓ there was actually a real snake. I feel like in people with dementia, a lot of times when they say something, because we don't ultimately want to make them feel more agitated and to exacerbate the problem. Sometimes you would have to lie per se, saying some of these white lies and basically go with the flow.

Beth Nolan (26:51)
Right.

Jackson Nguyen (26:58)
And so how do you really balance between their reality versus what's the actual reality?

Beth Nolan (27:04)
which the actual

that I have to respond to in my reality. So the way, skill that we do this, it's not, mean, this idea of white lying, I find that is a place that people go to when they don't necessarily have the skill to figure out how to do something differently.

Jackson Nguyen (27:07)
Yeah.

Beth Nolan (27:21)
So if my job also is to not escalate the situation, to be the one with the fully functioning brain, but also be able to see somebody else's point of view, the skill that we really develop is first is this place of reflection. ⁓ there's a snake on the floor. I am reflecting at the level of anxiety matching that person. This person came out of those kitchens and said, there's a snake on the floor. There was a little bit of concern you could see it in my face, but she wasn't freaking out and screaming.

Jackson Nguyen (27:48)
Mm-hmm.

Beth Nolan (27:49)
So the response to that place, if I really don't think there's a snake on the floor is, ⁓ there's a snake on the floor in the kitchen or somewhere else. It's a very, it's a, it's a very low effort for me to simply reflect what they're saying and see whether or not they think this is something to be concerned. Like, yeah, there's a snake in there. I'm not going back in there. In this case, it was something I could easily check out and confirm.

But the same sort of approach is what we do for everything. The first thing we do is reflect and we reflect at the level of concern. So let's take it to a more disconcerting thing. Hey, there's, there's, hey, listen, there's, there's kids out there and they're playing in the street. wow. Notice my reaction and my reflect emotionally a little bit more heightened. I actually match, but just right underneath the person because the reality is I can look out the.

front window and there's no children from my viewpoint. So this is the place where I've got to be able to have the skill to go to the next thing. wow, there's children playing in the street? I am truly can say that without lying. is, my reality is I'm not seeing it, but I'm not negating yours. I'm not lying to what you're saying simply by reflecting in the form of a question, but I also get more data.

Jackson Nguyen (28:38)
Mm-hmm.

Yeah.

Beth Nolan (28:58)
So the person will

say, yeah, there's children and they're playing in the street. They should not be playing in the street. Is that true or not? Is it true that children should not be playing in the street? Can you agree to that? What do think?

Jackson Nguyen (29:09)
like I mean children playing on the street that's that's a normal thing yeah

Beth Nolan (29:13)
Yeah, it's a normal thing. If it's a busy intersection, if

I don't know, it's true. We would love for children to have yards and ball fields and places where they could go that isn't a street. So you're right. You immediately responded with like, it depends. Are you in a city? Is that all they got? Is that that's actually, you know, a pretty normal thing. In that moment for that person, I'm checking to see what their level of distress is on it.

Jackson Nguyen (29:29)
Mm-hmm.

Beth Nolan (29:38)
I actually will lean into and say, ⁓ you think that's a problem or not so much? I can figure out whether or not it's a problem for that person. Because the reality for me is I don't see any kids out there playing in the street. Or if I do, they're always playing out there. That's where they set up their nets and that's where they're going to play soccer. And then they always, as a car comes down the street, it's a neighborhood, they come down pretty slowly, they say, hold on, and they pull, let the car go by and they go, game on.

Jackson Nguyen (29:50)
Mm-hmm.

Beth Nolan (30:05)
So I can figure out whether or not other people are safe. If there's something I need to respond to as the person with the more intact brain, but it doesn't mean I can negate the other person and I don't have to. ⁓ well, maybe, should we tell somebody about that? I want to find out what they feel like the solution is and meet their need. So if they have distress, I can figure it out. When it becomes even more absurd, that's where people get really, really uncomfortable.

This idea, for example, of my husband, his brain was lying and confabulating, saying that the male caregiver that I've got coming in, I'm sleeping with him now. This is where I'd be like, oh my God, I've got to respond in a way that makes sense to another adult. Oh my God, you're thinking I'm sleeping with him. Wow. Well, are you? Okay, so you're asking me if I am. Everything someone gives to me, I give back. I reflect that.

Jackson Nguyen (30:32)
Yeah.

Beth Nolan (30:57)
It's a weird habit to try to get into. It's not something we want to do, especially if someone accuses you of something so offensive. How do I pull back and go, okay, so I'll be honest. If you're asking me if I'm sleeping in, I'm not. I can be honest if somebody asks me a direct question. At that point, if that is not accepted by them, I can see that in their face. But you're thinking I am.

Jackson Nguyen (31:05)
Mm-hmm.

Beth Nolan (31:21)
This is the place where I do physical. I turn my body fully away and go, wow, because this is a defensive threat. This has a very different look. No, no, no, no, no, no, no, no, I'm not sleeping with him versus, my gosh, it puts the problem out here in front of the both of us. It's a physiological technique that changes your amygdala from this and how this looks to, oh my gosh.

Jackson Nguyen (31:33)
Thank you.

Yeah.

Thank

Beth Nolan (31:48)
My brain is telling your brain, I don't see you as a threat. I'm being honest, I have nothing to hide because we're in this together. It's out here in this mutual space. my God, you're thinking I'm sleeping with him. That must feel, that is awful. I don't ever have to lie, but it took me a long time to practice these skills.

Jackson Nguyen (31:51)
Mm-hmm.

Okay.

Mm-hmm.

Beth Nolan (32:11)
that

I don't have to lean on white lies. There's a difference though between telling the whole truth, nothing but the truth. And I think that's the piece that becomes so different.

Jackson Nguyen (32:13)
Yeah.

Mm-hmm. ⁓

That's fascinating. Because like I personally have observed that a lot, like especially with the staff, know, sometimes we kind of just go with what that person is saying and just to make, you know, them calm down. But ultimately we, as a result of doing that, you know, we say these white lies. That's obviously not true. Like, let's say they say, oh yeah, I'm going to go see my mom. But like, obviously she's 80 years old. Her mom might not be alive anymore. And it's like, okay, but like.

Yeah.

Beth Nolan (32:48)
Yeah, it is definitely hard, isn't it, to try to figure out how I'm going to respond in that moment, right? If someone's looking for their mother, that's where the skill of what do I do in that moment to support the individual, reflect, tell me more about it. And I get curious. I find out what is the unmet need. That's the place that it becomes much more clear when you've got something I really can't do anything about, like looking for your mom. Tell me about your mom. So your mom, she took care of everything, didn't she? ⁓

Jackson Nguyen (32:53)
Mm-hmm.

No.

Beth Nolan (33:17)
gotta

know a little bit about you or get curious. Tell me about your mom. Now was she somebody that organized everything or was she like party time? Well, she got stuff done. She was, oh.

So I can start to get a clue about if I'm searching for my mom, what does that mean? I'm searching either for safety, I don't feel safe, I'm searching for comfort, I'm feeling distressed. How it is I can bring that mom feeling into the moment and support your need. That's the piece that becomes that, the purpose behind that, me more about that.

Jackson Nguyen (33:40)
Mm-hmm.

Yeah,

definitely. because I feel when residents start living in a nursing home, it's a very new location for them. I feel like when residents come into nursing home, it's usually because they usually get discharged from the hospital from a medical condition. And then from that, because they can no longer take care of themselves, then they get sent to the nursing home. And so it's like shocking for them. And so by having,

them grounded in that moment and you know something familiar to them whether it's like a blanket or whether it's like a picture of their mother or whether it's something that they truly love so to help them feel more comforted and at home because obviously the nursing home it can be sometimes too institutionalized and we they can be very overwhelming at times.

Beth Nolan (34:29)
Yeah.

Yeah, I mean, how many of us live with 13 other people plus staff coming in and out of our spaces? is an odd thing. I'm asking with somebody whose ability to take in data and make sense of it and actually figure out how I'm going to operate in the world. It's a really odd thing we do. We do really odd things to people who have less of their abilities are changing to take in the data around them and to respond to it and meet their own needs. Right. I totally agree. So you're right. I think that that's a become a

Jackson Nguyen (34:38)
Yeah.

Beth Nolan (35:02)
big

piece of it is how do we help people find the familiar, an environment that is functional to them, that is actually friendly, but even more so that's forgiving. I can interact in a world that I know what to do in there because there's things that are, well, they're familiar to me. So for example, we know that we talk about the knife thing earlier. We don't have nursing homes that are gonna leave a block of knives on the counter.

That is not just for residents, but it's also for staff. If staff can be a little bit more, feel like the world is set up so it's actually, I can have someone walk around and live in their own space, in their own home, but I have a sense of comfort. There's not a bunch of knives laying around. That makes sense to me. That is, makes it a little bit more forgiving. So there's things that I can interact with that.

Make sure that the rest of the world knows and feels like I'm safe as well. That's a big piece of it, right? I love that and then familiar places, right? So yeah

Jackson Nguyen (35:59)
Now I want to shift a bit more towards the heart of your work, the positive approach to care, the PAC framework, which is transform how so many professionals, caregivers, and families engage with those living with dementia. I was wondering if you could tell us a bit more about PAC, that framework, and how it was originally developed, and what is it, and how is it different compared to other frameworks in dementia care?

Beth Nolan (36:23)
Yeah, so Teepa Snow is our founder and she is an occupational therapist. So Teepa, number of years ago, started working in brain injury and working with people and recognizing that how the brain experiences the world, that becomes a key piece of it. And the great thing about the field of occupational therapy is that there's a connection between what the brain and the body are experiencing and how it is that I show you what you're seeing.

how it is I can just figure out what's missing that one piece that's missing and just augment and support that and then suddenly you can shine.

That's positive approach to care. So the techniques of reflecting, the techniques of leaning into, me more about that, the physical aspect of how your brain becomes a little bit more comfortable when I turn in supportive stance to show you I'm not a threat, that we're in this together. That's what positive approach to care is. We're an educational company that develops curriculum and teaches people to then teach other people how it is all brains can get along.

With occupational therapy, there is no us versus them. And in our program, what Teepa has developed and that what we've been able to build on is, it is my job to figure out in this moment how I support you, how it is I can be and get connected with you functionally so we can get both of our needs met. It's a relationship-based approach that's based on abilities without ignoring what is no longer, but it's assessing in the moment what's working for both of us.

So in this moment with my brain, if I became so excited, so pleasure amygdala and focused on what it is I'm saying, and I just started talking and never shut up, at some point it would become uncomfortable for you. So what I'm doing, hopefully, even though the job is like you're trying to ask me questions and I give you answers, there is a give and take and there should be. Now that I've been talking for a little bit, I have a hippocampus that tells me this is the amount of time that's passed. I need to pass it back to you. There's an ebb and flow of the conversation.

Jackson Nguyen (38:19)
Yeah.

Beth Nolan (38:19)
how we

use those natural ways the brain and the body work together make things work for both of us a little bit better.

Jackson Nguyen (38:23)
Mm-hmm.

And I was wondering can you share a bit more on what are some of these positive approaches of you know looking at them straight and then being like really confrontational like turning your Turn to a size is that one positive approach and then what would be another positive approach like would be a calm voice and being you know and such like that

Beth Nolan (38:39)
Yeah. Yeah.

So it's.

I love that. So this idea we're taught as healthcare providers that we should be calm, right? But what if a friend came to you right now and said, guess what? I just got the scholarship of my dreams. I get to go and live overseas and study the thing I want to do. And my training told me I should say, that's wonderful. How would that feel for you?

Jackson Nguyen (38:51)
Mm-hmm.

It feels like you're very nonchalant and like not really... Yeah, uh-huh. So you gotta match that energy at least. Yeah.

Beth Nolan (39:10)
You're like, this is a big deal, isn't it?

Matching.

That's a positive approach to care. What I do is I match you. If I feel like you're now we're in a library and you are so excited, you literally in this moment you've forgotten or don't care. It is no longer important to you that you are quiet for all the people studying around you. So my job is to not only support you in that excitement, be like, what? I could actually give a little volume and go, and notice and see if you notice as well.

Jackson Nguyen (39:20)
Gotcha.

Beth Nolan (39:44)
that the fact that we're still in a library. And then how is it that I show excitement with intensity but not volume?

And if you're still yelling in that moment, I say, okay, this guy is flipping out. He's way too excited to be at a library, but I'm not gonna kill his vibe. He's so excited about this. And he has a right to be. Jackson, okay, we have got to go. We have got to go celebrate. Come on. How is it can match your energy, but then get you to a place that isn't gonna piss everybody else off because they're trying to study and they did not get the scholarship yet. And they're not going overseas to study the thing of their dreams.

Jackson Nguyen (40:07)
Mm-hmm.

Beth Nolan (40:17)
going to see if we can get connected by still matching your energy, showing you I'm here in a different way than volume. So I'm meeting the needs of the environment and the people around me, but I'm also meeting your needs. But then also we're going together. So it's, it's a very skillful technique that requires adaptation. In that moment, I'm assessing, looking around, but I'm also not going to turn to you go, Jackson, we're library. Shh.

Jackson Nguyen (40:32)
Mm-hmm.

Beth Nolan (40:43)
You'd like, dude, I know, I know. This idea that one adult can tell another adult how they should behave, that's the piece that I think we miss. So a positive physical approach teaches us to dynamically assess self first. Take a look in the mirror and recognize, are you accurate in your assessment? Can I, is it okay to yell?

in a library? Well, the rule is no, but are we going to burn the place down? Are people going to arrest us if we go, what? If I just match your energy one time and then we let people know, I can let people know we're going to be a little bit more quiet. So it's matching energy, but within an accurate assessment of what's going to be fine. We've all heard somebody yell out or talk loudly in a library and at the worst case, it's annoying.

Jackson Nguyen (41:24)
Mm-hmm.

Yeah.

Beth Nolan (41:30)
For a long time, other people are going to start to intervene. It becomes escalated as a problem for other people. So the positive physical approach teaches us to, first of all, self-assess, recognize where we are and whether or not we have accurate self-assessment. Then it is about the technique of approaching and connecting, getting in relationships with somebody so then we can get things done. The deeper skills are things like how the body moves, how we could actually move together, how when...

Dementia really robs me of my ability to move my limbs in the way that's helpful, how it is we work together. And that is through that neurological connection of touch. Everything is based on visual cues, verbal cues, and then also touch cues, but they all have to match.

Jackson Nguyen (42:11)
That's incredible. Because previously in one of my podcasts, I was talking to another expert, David Troxel, and he's like known for his best friends approach, which is another type of framework to dementia care. And it's now with this positive approach to care combined with this, you know, best friends approach. Now I feel like if we put all the approach together, that could be so powerful in caring for those. Yeah.

Beth Nolan (42:12)
was pretty cool.

Yeah!

There's so much overlap.

Yeah, there's also the idea of how it is we, and none of these.

We're not talking about rocket science, but we are talking about brain science, right? So I think with a lot of these techniques, it's the idea of how we use the skill of reflecting, which isn't something that's unique to occupational therapy or unique to the positive approach to care. A lot of these techniques are how it is the body and the brains work together. But you're right. At the end of the day, we're talking about

growing self-awareness to see whether or not my needs and your needs are matching so we can be in relationship together as two adults. That's the key, isn't it? Yeah.

Jackson Nguyen (43:14)
Yeah.

As we begin to wrap up, I want to zoom out and reflect on that bigger picture. If you could change one thing about how dementia care is approached today, whether it's in policy, healthcare, or the culture of our care environment, what would it be?

Beth Nolan (43:30)
I think...

If I could change one thing, I think it has to do with how we help and support and grow education. So we know that there are ways in which people can live life fully with dementia.

And if we could have funding streams that focused on supporting care partners, whether they're professional, paid or unpaid care partners, and that automatically the social living side of this would come into the system, that to me would be one of my biggest wishes. Because the reality is, is that we're talking about major, major physiological cognitive changes that are happening to people. And there's so

little support for our professionals, our family care partners, and also our people living with dementia. And there isn't necessarily a structure that helps people continually grow their skills as this changes. No one would look at a young parent, a single parent, bringing home an infant and say, well, there you go, you're alone. You should raise this child alone and you should be able to do it 24-7.

That's nowhere near ideal. it's, as an example, it's an absurd idea that you're gonna be able to provide everything for this developing human, especially at the beginning when things are so intense. Well, that's the place that we've got an advantage in dementias. These changes, we don't go to the fact that I'm gonna have to do full on hands-on care right away.

So taking the opportunity, not being afraid of this fact that I'm gonna be living with brain change and taking that opportunity we have to provide education so the two of us can grow in our skills. Because what I have seen is that when people are aware, when people have skill, life is possible in dementia and the contributions that can be happening to the very last breath on this earth.

Jackson Nguyen (45:20)
Thank

Beth Nolan (45:25)
are something that can happen when I believe and know the neurological truth in all these dementias is that I am me. I am who I've always been, but I am changing in dementia. And that's gonna be the truth until I'm no longer on this earth. And what I see in that moment is, even with my own father-in-law, one of his grandchildren came into the room. He's going through the active dying process.

And she walked in believing and knowing he's still here. She came to visit him even in his active dying moment and said, hey, pops. And out of nowhere, this guy on oxygen laying in bed said, hey there. And she went, I am the favorite granddaughter. And that moment of connection, that's it, isn't it? That's the meaning of life, those moments of connection and humanity.

Jackson Nguyen (46:03)
Mm-hmm.

That's incredible. What is one thing that you hope that our audience today could take about dementia and those living with it?

Beth Nolan (46:18)
I think it does come to that, is that if I'm living with dementia, like I said, I am me, I am who I've always been, but I am changing. I am not having some major personality change other than the fact that the way that I am...

acting in response to internal or external stimuli. Every behavior has purpose and meaning. It is our job as care partners when something becomes illogical or even worse yet looks like the way he would always like, hmm, dig at me later on or earlier on in our marriage. In that moment, do I have the support and the self-evaluation to go, okay, this is really getting to me. I've got to take a breath.

because truly I am expecting a lot of care partners. But if we can actually learn together, maybe we can actually get along together better and find moments of joy.

Jackson Nguyen (47:07)
Thank you so much, Beth. This conversation has been truly remarkable. I'm super grateful to have you here with me. Thank you so much for sharing your wisdom, your experience, and your empathy with us in today's episode. But yeah, thank you so much.

Beth Nolan (47:20)
Thank you too, Jackson, and thank you for doing what you're doing and spreading the word that life is possible in dementia.

Jackson Nguyen (47:25)
Thank you so much.