A Conversation With Dr. Johnson On “Time Travel” Based Memories

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Welcome back, everybody, to another brand new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and I'm excited to tell everybody that I have a very special guest here with me today. So without any more hesitation, I can't wait to to introduce him to everybody. His name is Dr. Chris Johnson, and he is a clinical professor of sociology in the Department of Sociology at Texas State University. And he is also the creator of a state-of-the-art program called Dementia Aging and Studies Program.. And I can't wait for him to give you more details on what that entailed. But I do know that it was a result of years and years and years of research. So welcome to the show, Chris. It's so nice to have you here with us today.

Thank you, Lisa Skinner Skinner Skinner. It's great to be here.

Oh, you are welcome. It's my pleasure. So I have prepared a couple of questions for you, and I'm going to start off with the first one. And then you can just simply give your response to each question. So the first one is, when agencies treat dementia cases like standard companion care assignments, caregivers are really being set up to walk into situations that they are not prepared for. Prepared for. Do you agree with that statement? And if you do, what has your research shown you in terms of that situation?

Well, it's a combination of my research and my personal experiences because I— my mother had Alzheimer's and my oldest brother had Lewy body dementia. And my aunt had Alzheimer's. It's in my family. And then also, probably I developed— I've been involved in actually getting out to nursing homes and training staffs in probably over 100 homes in Louisiana and Mississippi, including the first memory care in the state of Louisiana, which we developed as an experimental one in when I was director of gerontology there at the University of Louisiana before going to Scotland to the Iris Murdoch Dementia Center at University of Stirling, and then finally now at Texas State University to develop America's first program in dementia and aging studies totally online. Now, there are two types of caregivers. There's professional caregivers and there's non-professional. Non-professional be family, friends that are taking care of the person with dementia who have absolutely no training whatsoever. If they're lucky, they'll get some from the Alzheimer's Association or similar, or maybe blogs or some similar sites that they can go online and get. Some people don't use the computer though, and, uh, other people have language barriers where they can't get that type of training if they just speak, for example, Spanish. So, you know, we, we— I give it as an example. My wife started out as a nurse aide in a nursing home to get a job out of high school. And then she went to college and earned her way through college. She earned her way up in the nursing home to, you know, activity director. Then became a recreational certified recreational therapist and then got her master's in gerontology and her doctorate in dementia studies at Sterling University. She did a 3-country study of nurse aides in Canada, the US, and in Scotland. And she found that only the US, they're the working poor. They make about what you'd make at McDonald's. And you have a revolving door, high turnover rates, which predict bad care. And then she gives the example, if you watch her YouTube video of her TED Talk, it's called "Guess Who's Taking Care of Your Mother?" by Dr. Roxanne Johnson. She talks about her research findings of the 3-country study on nurse aides. And it found that a nurse aide, if you look at the current training in America to become a beautician, It's 1,600 hours of training and a test. To be a dog groomer, 400 hours of training and a test. To be a nurse aide in America, 100 hours of training and a test. So we value dogs and our hair more than we do our elders.

And I think our coffee too, because I recently read that baristas receive more training on how to make coffee drinks than caregivers do on how to take care of our loved ones living with dementia.

Yeah, I mean, it's, it's shocking. And particularly when you have to think that they have to, they have to learn how to change tube feeders. They have to deal with the many unmet needs of persons who, with dementia, who live in homes that are not designed properly, memory care that is not designed properly to, to empower the person with dementia, which is what we research. And then so you have design and environmental problems. Then you have the problems of both the family. Imagine a family that comes in to visit on Sunday and you have 6 or 7 family members. And they're circumambulating around their loved one with dementia and they're identifying themselves in their roles. And that person has time traveled back to age 20. And you have a person who's 80 that says, she's your wife. I'm not even married. I'm 20. Who are you? Then the person says, who's 40, says, I'm your son. Who are you? I'm not even married. Who are these people? So you can imagine the nightmare they go through and why they need a medication afterwards. We have something better.

So there is a myth circulating around out there that I uncovered, and the myth states that any experienced caregiver can handle a dementia patient. Based on what you're saying, I would say that that is far from the truth. Why don't you explain to us why? Why is it so complex and so difficult to care for people living with a brain disease that causes cognitive decline?

There are many reasons. One is most of the people doing the training aren't properly trained. And education, number one. And then number two is you have over 100 diseases that cause dementia. And, you know, the Alzheimer's stereotype has been used for so long. It's used by many doctors who— I've had, I've had people in nursing homes who'll come up to me and say, Dr. Johnson, there'll be a staff member. They'll say, I don't think Mr. So-and-so has dementia because we, you know, we've had these lucid moments. And, you know, it may be the vacillation you get with time travel, but it also may be an improper diagnosis. We had one man that had hearing difficulties and he was diagnosed as Alzheimer's. We had another person that had, you know, and by the way, when you have hearing difficulty and you're given the Mini Mental Status Exam, you're going to, you're going to guess at answers, right? Because you don't hear them.

Right.

And then you get them wrong and then you're, you're given the diagnosis of Alzheimer's. And many times the disease is not Alzheimer's. It's another disease.

Or it's more than one developing at the same time. I don't think a lot of people even realize that there is such a thing. We call it mixed dementia, and it could be 2 or 3 brain diseases developing simultaneously. So it's, you know, attacking different parts of our brain simultaneously. And when people learn that, they're like, oh my gosh, I never ever would have thought that that could be a thing.

Yeah, it's, it's complex. I was dealing with Korsakoff syndrome men in Scotland who started drinking scotch in large quantities when they were in their teens. And by the time they hit their 20s, they had full-blown Korsakoff syndrome. And it's an alcohol-based dementia. And of course, you know that the UK, US for that matter, is a pub culture. It's based on alcohol. It's, you know, it's such an important drug that's promoted by the culture itself. We ban cigarettes, but we don't cigarette ads, but we don't ban alcohol ads. And by far, alcohol is a much more dangerous drug than cigarettes in terms of what it can do to the brain and behavior.

So tell me if you agree with this statement. Correcting a confused client helps them stay grounded. Does this bring back any memories of Reality Orientation Therapy? So since I kind of opened up that Pandora's box, explain, you know, how that has evolved and it's kind of, you know, disappeared. But from what I've seen and still exists, a lot of people don't realize that there is a better way now and has been around for 25 or so years.

Yeah, so when I was in the doctor program, I learned quite a bit from Nancy Mace and others that were kind of ground, you know, they had set a lot of the standards. And one of the things we didn't have the buzzword validation or call it validation therapy, but we called it modified reality orientation. So we modified it. It's not lies because they're in a different time frame. And it's— and if you look at it that way, in our time travel model, they're not lying about the time frame they're in. Not as for you to say that you can see him soon when he's dead. It's not a lie because they're, they're in that time frame. And you'll show them a picture or they'll forget about it or whatever. But people don't understand time travel.

And if there is one thing that's an absolute that we learned through Reality Orientation Therapy is that no matter what we say to somebody who is telling us what their truth is, what their belief is, you can't change their— that belief with them. It's not aligned with the healthy-brained person's reality, but it's still their reality. And that is, you know, kind of the crux of this whole new ideology and methodology of dementia care, the approach to dementia care. So I don't know if you want to— would like to elaborate on that a little bit. Yeah. Help us understand what you mean by time travel. I know what you mean by time travel, but I'm sure a lot of my audience would not know.

Yeah. So, you know, the time travel model basically is a model in which we try to understand behavior through the process by which the person with dementia goes through. Instead of neatly moving through stages, like you get the stage theories from the National Alzheimer's Association or Alzheimer's Society, they ought to be called the Dementia Association instead of the Alzheimer's Association like they do in Australia. But they don't. They haven't got to that point yet. So they call it Alzheimer's.

Everything is Alzheimer's, which everything is not.

No, it's— and it's a disease. We're talking about a condition. And that's what dementia is. And it's caused by diseases. So instead of mostly moving through stages with Alzheimer's, they experience traveling in a downward spiral back and forth through time to eventually travel back to their earliest years. We don't childrenize them. We understand though that they're visiting in their brain these earlier years and their body follows. Uh, the time travel model is a useful tool in understanding and explaining this to caregivers because there it empowers them to learn how to join their loved one in the appropriate time frame they're in. So when my mom time traveled back to approximately her early marriage years, she would say, I want to go see Bob, not your dad. I want to go see Bob, which is my dad, right? If she would have said dad, it would have been a clue that she had me at that point and knew I was a son.

But at the time, what, she was— he was the boyfriend, I guess, huh?

Either a boyfriend or, you know, an early— early at the early part of their marriage, probably it could have been a boyfriend. You have to know how long they dated. And, you know, sometimes care partners can find this information and sometimes they can't. But the time travel model connects to validation therapy. It allows, you know, care partners to become best friends to the Alzheimer's person or the vascular disease person by avoiding imposing their timeframe on them. So for decades, Alzheimer's has been considered, you know, the disease of the century. We know it accounts for at least 60% of all dementia. But what we, what we learn in the time travel model is this helps care partners understand the variations in identity which relate to things connected to significant others.

Well, let me give you an example if you want to expound on this, because one of the things that we frequently, frequently hear with people living with dementia is, "I want to go home." And the instinctive response that family members and caregivers will say to that is, What are you talking about? You're already home. Now, based on the time travel model that you're talking about, the first thing we need to find out is which home are they referring to? So there's questions we can ask to prompt them to help us clue into, are they looking for their childhood home? Are they looking for the home that they lived in when they first got married? Are they looking for the home that they raise their children. And we have to find out exactly what it is that they're trying to get to or find before we can respond effectively to that statement, right?

Yeah, absolutely. And that's— I'm glad you mentioned that because our research team is applying for a grant to develop an app along with AI features which will actually have pictures of their home, which in which they will be able to identify which home they're talking about. I mean, it could be that they're just lonesome. It may not be that the home means they actually want to go to that home because sometimes they mix up their words as well. But what's important for people to understand is the different types of time travel with Alzheimer's. Or vascular dementia, either one. Vascular is basically little stair steps. It's short strokes, multi-infarcts, but they're time traveling. Before I talk about the tool, I want to, I want to mention that we want to tap on basically 4 types, 5 types of time travel, right? Cognitive time travel, emotional time travel, social time travel, physical time travel, and functional time travel. And those are all explained in the article that we published way back in the year 2000 in the American Journal of Alzheimer's. My wife and I, we came up with the model and we, we did an update of the model for people with advanced dementia in the Journal of Behavioral Science. A lot of this came from our own experiences in training in literally over 100 nursing homes and assisted living memory care, not only developing it for the architect that has absolutely no training in evidence-based designs for people that, that have Alzheimer's. We're talking about which, for example, they don't see in 3D when they reach stage 6, if you use Reisberg's 7-stage model. So the flooring has to be a different color than the chair, otherwise they miss the chair and break their hip. So these are what we need to know in terms of not just how to communicate with them in their time frame, but also how to communicate with an environment that's home-like, that relates to their time travel. So that's where our app comes in. And the app— we want to develop an innovative digital application for person-centered care of individuals with Alzheimer's using the time travel model that we developed. And while clinical staging tools like the Functional Assessment Staging Tool of Barry Reisberg, who's a friend of mine, it helps caregivers track the physical and cognitive decline because it has deficits with each stage in substage, right? But it fails to explain the day-to-day behavioral shifts and temporal disorientation from time travel back and forth through time. So our model addresses this gap by shifting the caregiver's focus from a practical care framework to fork in 4 key ways. It explains nonlinear behavior. Which helps caregivers understand that abrupt, abrupt shifts in time and orientation are part of the disease process rather than stigmatizing the behavior as erratic or deceptive. Yeah, or even worse, which psychologists love to do, give it a label as a personality change. Second, it enables validation by encouraging caregivers to meet the person with Alzheimer's in their current reality rather than reorientating them to the present, reducing distress, preventing challenging behaviors. I don't call them problem behaviors. They're challenging behaviors and decreasing framework. So, you know, I mean, decreasing reliance on psychotropic medications. Excuse me.

So we are just about out of time, unfortunately. I think we could go on and on and on and on and, you know, continue to do a deeper dive. And I think this information is going to be so helpful for people who have been thrust into this situation, either as a family member or a caregiver, because it could change the landscape of the entire journey and elicit many more positive outcomes than they're probably dealing with today. But before we wrap things up, Chris, is there anything else that you would like to share with the audience that, you know, they could take away with them today if they are in this situation or they will be at some point?

Well, you know, it's, it's, um, We have to, we have to raise the standard of education, right? I mean, it's, it's, it's really crystal clear. The biggest problem is, are the people, you know, that are giving the most care are not getting the support they need. And, you know, that's family members. You know, they, they get some from They'll go to some, get a chance to go to Alzheimer's meetings, or they'll, they'll look online for some information. But so much more can be done. And, and we can move beyond just describing things in stages to our time travel model, which I think is going to need to be implemented more.

Yeah.

For people to get understanding. I mean, we've had total PhDs come back and get their master's from us. Because of the time travel model.

And I think one of the things that we want to just kind of shine that huge light on for everybody listening is this is the proverbial elephant in the room situation. Guys, it's larger than life. It's real. It's not going away anytime soon. Chris and I can both tell you that we are being told and prepared by the Alzheimer's Association and the World Health Organization that the number of people expected to develop Alzheimer's disease— and yes, Alzheimer's, we're not even factoring in the other brain diseases that cause dementia— is expected to triple by the year 2050. Let's do the math. That's 20 4 short years away. That will be here before we can blink our eyes. We are not prepared. And that is, of course, if a cure or a treatment is not found, but I don't think that we're that close to anything that is a treatment, let alone a cure. So this is why everybody needs to get access to this information because the chances of it touching your family is increasing more and more and more if it already hasn't. Any last words about that, Chris?

Well, I mean, you're absolutely right. We, we, uh, we're faced with more and more causes of dementia. It's not just Alzheimer's. I mean, we're seeing brain trauma a lot. We're, we're seeing all these other diseases, um, that are, uh, coming up now. And we, we live in a toxic environment that's, that's causing a lot of this. Um, the foods we eat, uh, you can go on and on. And there are some neurologists who have labs here in the U.S. that are looking into these things and are way ahead of the game in terms of understanding the effects of food on the brain.

So we should actually have you come back and have a separate conversation about that because we do know that there are things that we didn't know 30, 40 years ago that will help reduce our risk of developing Alzheimer's. But we're out of time today, unfortunately. I've been hanging on every word that you said. Hope everybody else is too. So Chris, thanks again for taking the time to be here with us today and share this My pleasure. You know, just absolutely fascinating knowledge with my audience, and we all appreciate it very much. So I will be back next week with another new episode of The Truth, Lies Alzheimer's show. I'm Lisa Skinner, your host, and if you have a chance, check out my newly updated website. You'll find us at mindingdementia.com. So in the meantime, have a great rest of your week, and I hope everybody stays healthy and happy, and I'll be back next week with another new episode for y'all. Bye for now.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime. But you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.