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

Welcome back, everybody, to another brand new

episode of The Truth, Lies, and 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 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.

Dr. Christopher J. Johnson: Thank you, Lisa. It's great to be

here.

Oh, you are welcome. It's my pleasure. So I

have prepared a couple 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, do you agree with

that statement? And if you do, what has your research shown you

in terms of that situation?

Dr. Christopher J. Johnson: 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, and

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 Sterling, 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

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 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 weren't 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 point did a three 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, 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 three countries study on nurse aids, and it

found that a nurse aide, if you look at the current training in

America to become a beautician, it's 1600 hours of training in a

test to be a dog. Remember 400 hours of training in a test to

be a nurse aide in America, 100 hours of training in 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.

Dr. Christopher J. Johnson: 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 you, 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 six or seven 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.

Dr. Christopher J. Johnson: There are many reasons. One is most of

the people doing the training are aren't properly trained in

education. Number one, and then number two is you have over 100

diseases that cause dementia, and you know, the Alzheimer

stereotype has been used for so long, it's used by many doctors

who I've had. I've had people in nursing homes, they'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,

Dr. Christopher J. Johnson: and then you get them wrong, and

then you're, you're given the diagnosis of Alzheimer's, and,

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 two or

three 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.

Dr. Christopher J. Johnson: 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, you

know, cigarette ads, but we don't ban alcohol ads, and by

far alcohol is a much more dangerous drug than than

cigarettes in terms of a. What it can do to the brain and, 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, 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.

Dr. Christopher J. Johnson: 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 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 timeframe they're in to say

that you can see him soon when he's dead, it's not a lie,

because they're there in that timeframe, 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 learn 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, if I don't know if you want it, would like to elaborate on

that a little bit, maybe 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.

Dr. Christopher J. Johnson: 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's

Alzheimer's,

which everything

Dr. Christopher J. Johnson: 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 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 timeframe

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,

Dr. Christopher J. Johnson: 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. Well, 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 and 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 raised 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.

Dr. Christopher J. Johnson: 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 and farts, 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 four types, five 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 have

Alzheimer's, we're talking about which, for example, they don't

see in d when they reach stage six. If you use Reesburg seven

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 Reesberg, who's a friend of mine, it helps

caregivers track the physical and cognitive decline because it

has deficits with each stage and 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 caregivers' focus

from a practical care framework to four in four 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, 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.

Dr. Christopher J. Johnson: Well, you know, it's, it's, we have

to, we have to raise the standard of education, right? I

mean, 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 it, 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 masters 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 Associations 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. It's expected to triple by the year 2050 Let's do

the math, that's 24 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?

Dr. Christopher J. Johnson: Well, I mean, you're absolutely right,

we were 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

seeing all these other diseases that are coming up now, and we

live in a toxic environment that's that's called. Causing a

lot of this, the foods we eat, you can go on and on, and there

are some neurologists who have labs here in the US 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 3040 years ago that

will help reduce our risk of developing Alzheimer's, but

we're at a 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, 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, and 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 Minding dementia.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.