Dan Seed (00:00):
Hello and welcome to the 50th episode of Big Ideas, a podcast from Texas State University. I'm your host, Dan Seed from the School of Journalism and Mass Communication. According to the National Institutes of Health, it's estimated that as of last year, as many as 6.7 million Americans were living with Alzheimer's disease by 2060, that number is projected to rise to an estimated 14 million people. Were joined by Dr. Christopher Johnson, a clinical professor in the sociology department, specifically in the Master's of Science and Dementia and Age studies program, and his work focuses on aging and dementia, specifically advanced dementia care, partnering end of life care, and nonlinear models of Alzheimer's disease as time travel. Dr. Johnson, thank you so much for being here.
Christopher Johnson (00:45):
Thank you, Dan. Appreciate you and Jamie asking me to do this.
Dan Seed (00:49):
Of course, we're thrilled to have you here. What you do is incredibly valuable work and we want people to hear about it, so this important work that you're doing, and it's an important conversation where hopefully we can help people out there in our audience better understand what might be happening with somebody in their life, a friend, a neighbor, a loved one. Before we get into our discussion though, you've been here at Texas State since 2014. Tell us a bit about your background prior to coming here and what drew you to making this your life's work.
Christopher Johnson (01:19):
I've always been interested in working with older people. I grew up with my grandparents and my aunt, and being around older people, I had my own age friends as well, but I've always enjoyed being around older people, so that's the hallmark there for my career. I've had dementia in my family. My mother and oldest brother both got it. I started out, I got my doctorate in gerontology from Iowa State, then took the job as director of gerontology at the University of Louisiana. We developed an Institute of Gerontology, which was ranked as one of the top institutions by the governor, one of the top programs in the state of Louisiana, the gerontology program there, and that was a master's online. We didn't have a very strong dementia component though, so I did some summer sharing with Sterling University in Scotland where we took faculty and students to Sterling.
(02:20):
That's where Braveheart was filmed. By the way. They have an Iris Murdoch Dementia Center, which does all the training for Scotland. So we did that for two summers and shared ideas. I'd already published an article in the American Journal of Alzheimer's that was used all over the world, including the uk. It's a model of Alzheimer's that is better than stage theories. It basically is the time travel model of Alzheimer's, and I'll explain that in a moment, but that carried on to my wife deciding that she wanted to get her doctorate in dementia studies from Sterling. So she commuted back and forth from Louisiana to Sterling to get her PhD when she got breast cancer and needed help with completing her goal. I retired early and after 25 years of being director of a award-winning program, we moved to Sterling for a year and a half.
(03:20):
During that time, we did an architectural conference for dementia. We did social models of care. It went over into the Netherlands where they have dementia villages now and dementia airports in the uk Were involved in that. And now dementia-friendly cities in the us which San Antonio is one now. And I'm working with a fellow at UT down on the coast on a project exactly that, looking at dementia-friendly cities, age-friendly cities. I took the job. I decided when we were finished in Scotland to move back to the US and develop America's first program in dementia studies. Well, our daughter got a job in Austin, so I proposed it to ut, met with them about eight times and with Texas State, and it really boiled down to Texas State wanting it more. UT was building a medical school at that time. They were very excited about my program, but I just got too much TLC from Texas State.
(04:26):
I mean, they really wanted it badly, and I loved the campus, loved the school. When we developed it, after a few years of developing six courses and getting other faculty members to develop courses, the program was accepted by the Texas Board of Regents. Then we got some nice publicity at the beginning where the Texas standard interviewed me about Texas leading the nation and the misuse of psychotropic drugs in nursing homes. A horrible statistic. And so we're in the right place. We do social models of care. We demedicalize dementia care in what we teach. We change the environment to make it person-centered based on the life history of the person. We connect to them through activities that are person-centered based on their biography and an app that's just come out in the uk. I mean, we're rolling. We're going to be just moving more and more into research.
(05:26):
I just got a grant proposal together with an architect in the design department. He and I went to Chicago to the Alzheimer's Association. We finished in the top five with our first attempt top five in America. So we wanted to design a hub for redesigning your homes for aging in place in dementia. Like my wife and I have done, my wife has her doctorate in dementia studies, so she did a TED Talk in Austin. She's one of 10 women that were selected for that. So she does consulting and that sort of thing. She's not in academics, but there's such a big need for this.
Dan Seed (06:08):
Yeah, for sure. And there's a lot to unpack there and so many fascinating components of what it is that you do and what you've done, because as you mentioned yourself, there's a personal history there with the disease, myself included, two grandmothers, my wife's grandmother, and it's something that's all around us, and I think this is why it's important to have you on is to talk about these things because there's so many people now that are, I don't know the correct term, not coming down with it, but that have it, that are living with it. And to give people a realization of how to treat them and work with them and still respect their humanity is really important. And one of the things that you talked about that I want to start with and then we can get through all that other stuff, is that idea about Alzheimer's. As time travel, which you first published 24 years ago, you've continued to research it since. Explain what that means. Walk us through that, what the concept is so people can understand that
Christopher Johnson (07:07):
It is really a very simple concept in a lot of ways, or at least I try to make it simple. We first published it in the year 2000 in the American Journal of Alzheimer's, and then again, an update in 2017 in the Journal of Behavioral Science, which dealt with more advanced dementia, but using the time travel to understand it, you've probably seen stage models of Alzheimer's. That mark beginning, middle, end, or seven stages is a very popular one that has sub stages. It basically has markers of where the person is in the progress of the disease, and there are over a hundred diseases that cause dementia. Alzheimer's accounts for about 60%, and it occurs as early as age 28. So it's not just old timers. As the saying goes, I see young people, in fact, I show a film of a 3-year-old. We filmed who she was pregnant with.
Dan Seed (08:04):
Oh my gosh.
Christopher Johnson (08:05):
Yeah. So it's not all old timers. Two thirds are over age 60, but there's that one third that are under. And there are so many other dimensions of younger people, including Korsakoff syndrome, which I dealt with in Scotland. These were men in their late twenties that had alcohol based dementia and head trauma and so forth and so on. All these things. So with Alzheimer's, what you see these stages, four stages, seven stages, people assume that their loved one is going to go through neatly through these stages. It doesn't work like that. It's not a linear movement through stages. The person actually goes on a downward spiral back and forth through time. One day they recognize their grandchildren. Next day they don't. Then they do, then they don't. But it's a downward. So suppose a person gets it at age 80, they'll spiral back and forth from 75 to 80, then from 70 to 75 in increments of five to 10 years roughly.
(09:08):
So once they spiral back on this downward spiral, they time travel back to revisit earlier ages of their life spec to the future in reverse Piaget's stages of adult development in reverse. When they go back to age 20, hypothetically when they travel back, then imagine this, they walk into a bathroom and they look in the mirror and they see an 80-year-old face, but in their mind they're 20 because they've time traveled back to 20. And so they say, what are you doing in my bathroom? Who are you? And then they walk out and an 80-year-old man says, I'm your husband. I'm not married. I'm 20 years old. Who are you? He tries to correct her. It doesn't work. Reasoning doesn't work. And so you get this back and forth scene of trying to reality orientate a person who has problems with thinking, remembering, and reasoning.
(10:12):
And it's because of this time travel. Whereas if the person would join them in their timeframe, when they reach age 20 in their brain, the only people and events and things they're going to remember are from 20 backward. I can show them a picture when they're at age 20 in their brain of their mom or their sister or their brother, and they will know who they are. I show 'em a picture of their son or their daughter. They say, who are they? So you can imagine the scenes that happen in nursing homes on Sunday after church where family members come in and they identify themselves as grandchildren. Son, daughter, pastor, I don't know any of you. I'm age 20. Who are you?
Dan Seed (10:59):
Yeah, I mean, I can recall going to a family wedding and my grandmother looking across the room, and she said to me, do you see that man over there? I said, yeah. And she said, that's my husband. Well, my grandfather had passed away in 1994. This was 2008. And I was just taken aback and looked across, and she was actually looking and pointing at my uncle who at that time was in his sixties, and there was a strong resemblance between the two. But that was a real shocker. That was kind of one,
Christopher Johnson (11:29):
That's a great example when you may have a son that's a spitting image of your husband, but he's age 40 and you've time traveled back to 40 or 35 abruptly that age, he's now your husband.
(11:47):
If there's similarity in how they look, so families don't understand all this because that they go neatly in these stages and it doesn't work like that. It's nonlinear. It's the person's going back and forth through time, even when they time travel back to early childhood, which would be prior to kindergarten in your life. We don't ize them. By the way, when they time travel back to these earliest ages, they're going to phase out their ability to speak in sentences just like they learned in sentences. 2-year-old learns how to talk. Three, when you go backwards, you gradually shrink. We call it aphasia your speech. And so when that happens, the person has total aphasia, eventually they don't speak, they just babble. Right. That's how it's explained by onlookers.
Dan Seed (12:45):
Right? Or they make noise hum. Yes,
Christopher Johnson (12:48):
Exactly. But what can happen is if we identify early music that that person liked and we put earphones on the person and play that song, he's got the whole world in his hands. They start singing,
Dan Seed (13:04):
Right? Oh, yeah.
Christopher Johnson (13:06):
They start talking a little bit and they'll have these brief lucid moments, and this is how our model works. It has all these stages, all these stages connected in this spiral. They shoot back up to the present briefly and say, Susie, you've got a new hairdo speaking to their daughter. And then they're back into that total catatonic state, right? They're not talking again, and they're mumbling and so forth and so on. And that confuses families because they say, well, they're in stage seven. They shouldn't be talking at all. What's going on here? We actually had a student who took care of her mother, who had a PhD, who came to get her master's degree in our program because we were the only thing that explained her experience with her mother. The stages she learned from the National Alzheimer's Association didn't make sense. Yes.
Dan Seed (14:03):
And I was going to say just another anecdote, it's crazy because everything that you're talking about, like I said, my family has gone through with two grandmothers and that exact thing. My other grandmother who just passed away in August, she was at that aphasia stage. But when we would FaceTime for birthday, she'd always sing happy birthday. And then there'd be that moment of happy birthday dear at the end, and then she was gone. Right? And so it's really the music
Christopher Johnson (14:33):
Sticks in their head.
Dan Seed (14:34):
Yeah, it's really interesting to hear this. And so that leads us into this program that you found here and the idea of how you're able to teach caregivers care partners as they're known, this kind of information. Why is that so important for people to know? I want to hear you say it. I have a sense of why, but I'd like for you to discuss why what you guys do is so important for caregivers.
Christopher Johnson (15:01):
So I have a colleague, she had just passed away. Her name is Naomi File, and she came up with a therapy called validation Therapy. And basically what it says is don't try to reality orientate them, validate them. Well, that fits very neatly. And there's another person whose theory of being their best friend fits very neatly into the time travel model. Because when you are essentially validating them when you're in their timeframe and you validate their timeframe, they're happy. But when you try to correct them, you try to argue and keep reality. Orientating a person who doesn't have those powers, you essentially are creating distress. And when they're distressed, then you have challenging behavior. And this is where these psychotropic drugs and medications come in, and personality change is one of the things they attribute to the anger and the rage and the frustration the person goes through because you don't get it.
(16:10):
You don't understand the timeframe. Now, we can't precisely guess which timeframe, but they give us a lot of hints. And the other thing that you can use, you can use a seven stage model of reedsburg to kind of pinpoint where approximately they are in terms of the stages. And for example, when they reach stage six in his model, they don't see in 3D. So they can't see the difference between a chair that's the same color as the floor. They missed the chair, they break their hip trying to sit down because they don't have, they've lost their 3D vision. And most people don't know that. But that happens with Alzheimer's. Once you,
Dan Seed (16:54):
I just have to stop you because I'm going to be honest with you, this is really eyeopening emotional for me to hear because the things that you're talking about are exact things that we witnessed with my grandmother who just passed away where she was falling, and it was, oh, it's her balance, and oh, it's this. And to hear you say, this is a real wake up call. The hindsight, it's like chills to hear this, to realize in the moment that we weren't able to recognize that or know about it.
Christopher Johnson (17:29):
Well, it's not necessarily, there's a lot of reasons why they fall. I mean, they also get what's called psychomotor retardation, tightening and stiffing of joints. And that's part of this time travel as well, because this puts them back to the crawling back toward the wheelchair, the bed, and then finally the womb. They're in a curled up state in bed similar to the baby in the womb. They're in that curled up state where this tightening of joints becomes if they live that long, and this happens wicker with younger people who have Alzheimer's because they have less of a time travel to complete, so they die within four to five years. Whereas a person who's older lives longer, they have more time travel to complete. Very curious thing to us, we don't really understand why. Totally. But that's our kind of off the cuff explanation of why younger people die sooner. It is fascinating to see how it works. And of course, I saw it with my own mother. My oldest brother had Lewy body dementia, which he got from chemicals in farming. I'm from Iowa, so he was a fruit farmer and did a lot of chemical spraying. And so he got Lewy body dementia, which is a different type of dementia.
Dan Seed (18:54):
And again, we're talking with Dr. Christopher Johnson, masters of Science and Dementia and Age Studies program. He's with that program, the founder of that program. Let's talk about that program that we have here at Texas State. Who are the intended audience students in a program like this? Because you did mention people that work in facilities and nursing homes, and I would imagine, not imagine, I believe that it would be very difficult for people in those mass kind of situations to be able to understand what's happening in a personal kind of way. And so I would imagine that what you guys do is to try to help them understand that, to create more of that care partner sense versus a caregiver. I give you care versus understanding your needs.
Christopher Johnson (19:45):
Yeah. I mean, our master's program is condensed. It's 33 hours totally online, so almost all of our students work. It has three tracks. The long-term care administration track, it has the practitioner track and the research track. The research track is for people that want to go on and get a doctorate in dementia studies or a doctorate in gerontology, because technically our dementia aging degree is a gerontology degree. And there are hundreds of gerontology programs around the country, but nobody has dementia in aging. And it's kind of interesting because 75% of nursing home residents have dementia and half of assisted living have it. And it's two thirds of older people eventually get it, so it can't be excluded from a gerontology program, which really puts us above the rest. Our competition research is something that we want more people going into that track that want to go on and then become professors or work for companies, et cetera.
(20:56):
We have the practitioner track, and that's for aging services, people that want to get jobs with the departments of aging and social services, adult protection, a big problem, elder abuse, working in housing for older people, independent living. We're in the perfect city in San Marco that very few people know much about in terms of aging. But San Marcos was ranked by Forbes Magazine as the top place to retire in Texas. You have the Kissing Tree Project, which is a 10 year project, golf course, everything. You have a lady in Austin, Amy Sweet, her dad owns the Raisin Industry in America. She has an award-winning home health and a hospice in Austin. She's bought some property in South San Marco, and they're going to be building, she's been talking to my wife and I about design, independent living, assisted living, cutting edge, which she wants to do, intergenerational, where she brings children together with older people, similar to what Pittsburgh University's doing. They have a center on aging called Generations Together. They do research strictly on intergenerational models of housing for older people. So that's interesting as well that Amy wants to do that, and she's already has ideas about bringing children together with older people, which we already have quite a few places around America that's doing that,
Dan Seed (22:35):
Which has long been a criticism in this country of the idea that we put people in a home and kind of forget about
Christopher Johnson (22:43):
'em. Yeah. And so we're going to get practitioners that are going to go into real estate and go into housing. Part of that, the exciting thing about that is building homes for aging and placing dementia or redesigning homes for aging and place in dementia. My wife was involved in a project where they took an old Walmart building that was vacated in Louisiana, and they made it into a geriatric mall. They had a daycare, we call it, day service for dementia. And then they had a geriatrician. America has very few geriatricians. We're ageist. We're prejudice toward older people. It's not required in our medical schools to take any geriatric courses, and yet they're the majority of the population. Sure, yeah. In the UK medical schools, they have to take geriatrics and they have scores of geriatricians, but we have plenty of pediatricians because we love children and we really don't have an interest in older people like we should. I think the practitioner thing is going to grow into housing interests as well. Many, many other things, industries that make older products for people with dementia, for people that are older, there's endless jobs that they're getting. And then we have the long-term care administration, which is basically they become licensed coming out of it as an administrator or an assisted living, a continuing care retirement community to run that or a nursing home.
Dan Seed (24:15):
So part of your goal, or when you look at the program and what you're trying to accomplish, what people are learning, what are some, and you touched on it a little bit here, what are some of the changes that you think are needed just in general in terms of how we view older people, how we view people with Alzheimer's and dementia, how we react to them or respond to them, and how do you think this program helps meet those goals?
Christopher Johnson (24:43):
There's many ways. One is we can learn from certain ethnic populations. For example, Asian Americans have a lot of respect. It comes from Confucianism respect for older people. It's also very strongly in Latino families, black American families, et cetera. But these families need support. Most people want to avoid nursing homes in assisted living, and they can, if we find we're able to develop a hub, which we propose to the Alzheimer's Association, where we can have designs that people can go to our hub and get designs for redesigning a home or doing it from the ground up. We can research these designs as well. And there are a number of designs my wife and I have want to test that actually cue people to the toilet to prevent incontinence, that noise levels. There's a fellow in Minneapolis, Steve Orfield, that owns Orfield Enterprises. He's done a ton of things for very famous musicians.
(25:50):
He's interested in our program. He's contacted me and our ARIA research group, A RIA is housed in psychology department and us and a number of other departments design and are involved in this research group. It's interdisciplinary research group of faculty. That's how I met Nadine, ADI, Dr. Adi, he's in design, and he and I met through Aria, the Aria research group. Well, we're meeting with the head of the A RP in Texas. We're meeting, we just met with the head of Alzheimer's and capital, Texas Alzheimer's. She's very excited about our program. You have Age of Texas, the acronym. We have yet to really connect with them. That's our next big project, is connecting with that group so that we can not only do research, but also do training and education with these groups to create more cities. Airports, they have elder crossings in the uk.
(26:55):
They have a sign with an older person with a cane as the elder crossing. I mean, they're just light years ahead of us. And I'm bringing all this in this program and more because it's global. We've hired faculty from China, from South Korea, from we have a Latino faculty member, huge problem with getting proper dementia education to Latino families. How do we do this? They're not coming to the Alzheimer's Association caregiver meetings. So we have to figure out how do we get this education to them so they can deliver optimum care and empowerment to their elder relatives. There's a huge number of research possibilities and grant possibilities. We already are getting, some faculty members are getting some pretty large grants. We're very excited. One of our faculty members came from Purdue, Dr. Cyan Kim, just as a huge grant. We have some really high potential in some of our faculty,
Dan Seed (28:02):
And we are running tight on time. So I have two questions for you because you've touched on this extensively, this idea of architecture or design in public spaces, private spaces. Walk us through, without getting too deep, I suppose, but you mentioned a dementia airport or dementia friendly airport at the beginning of our interview, what people can do in their homes. What are some of those things that you see around the world that you're hoping to push out in our society here that would ease that burden for people?
Christopher Johnson (28:32):
Age wave was a book that kind of prepared people for it. The whole thing is queuing right way finding, being able to find your way through queuing within your home so you can find your way to a toilet. If the toilet's visible from the bed, you can find your way to the toilet, particularly if it has a black toilet seat. You're not wearing your glasses. You can see it. It's these simple design changes that happen that we do within a home and within the surroundings of the home that make it safe, that cue the person to different things. They're looking for. How do I get to point A from point B and so forth. These are things that they need to know. And when you talk about airports, it's queuing as well. Even the cues that are used in memory care are not, not based on research.
(29:29):
They'll put a shadow box by their room with a picture of the couple when they were married recently. Well, the picture's wrong. Number one, they should have a picture of their mother or their dad. They're not married. They're age 20, right? But it's up too high too, because in stage six, they don't look up. They're looking down at a 75 degree angle downward. So they not only don't see in 3D, they're not looking up. So the queuing has to be low enough that and big enough that they can see it without their glasses and have the proper content. So those are basic rules that we use. And now there's an app that a fellow in the UK developed. He put me on his board. He developed this really great app that uses time travel basically. And you gather all the information about the person's past, put it in the app, and it helps the nurse aides. It helps the family caregiver to understand what foods, what songs they liked growing up because their brother gave them the information. The brother of their mother gave them the information.
Dan Seed (30:39):
And what's the name of that app for people that may look
Christopher Johnson (30:42):
For, it's called Moments.
Dan Seed (30:43):
Moments,
Christopher Johnson (30:45):
And I can connect them with him. His name's Darren Evans. He's in England, and his app is really going wild. He has a number of different apps for older people that tap on reminiscence. I mean, it's really exciting, some of the stuff he's doing. But he found out about me on LinkedIn and that's how we got linked. So we're hoping that this will all evolve here to become hopefully something similar to an education research center in dementia and aging at Texas State. That's the big picture.
Dan Seed (31:25):
That's the big hope. And I truly hope that that goal is accomplished because the work that you're doing is fascinating. It's valuable. Really informative. I found just talking with you for these 30 or so minutes. Just eyeopening. Last question before we go, because we are tight on time here. How many students do you have in the program and how people that are interested, how do they apply? What's the process?
Christopher Johnson (31:48):
Well, they can find, all they have to do is Google Dimension Aging at Texas State Dimension, aging Studies, MS and Dimension Aging Studies, there's a number of sites that'll pull up the process of application. We're seeking applications for fall right now. They can call the Department of Sociology and they can get 'em going. That's even simpler. They can pull those things up and get started in the program. Dr. Chi is our director. She has those figures. It's runs from 20 to 30, but we're really wanting to really raise that, raise the bar. And part of that is our need for marketing and gifts toward marketing. Our program, which I was able to get when I was at University of Louisiana, and I hope we can do here in this program because it's much more than what Louisiana had. This has the dementia component.
Dan Seed (32:46):
When we post this on our website, we will provide a link to the program so people that are interested can apply, they can donate, find out more information on it, because as you said, it's necessary, needed, and the work that you all are doing is incredible work. And I want to thank you, Dr. Christopher Johnson for being here. It's been an education for me to talk to you, and I hope the same for our audience.
Christopher Johnson (33:08):
Thank you so much, Dan. I appreciate it.
Dan Seed (33:10):
And thank you all for the privilege of your time and downloading and listening to this month's episode. We'll be back next month with a new guest and a new topic. Until then, stay well and stay informed.
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