Love Conquers Alz

DR ETHELLE LORD - Learn about Transactional Dementia Intelligence: A Systemic Model of Dementia Care

June 02, 2024 Dr. Ethelle Lord, Susie Singer Carter and Don Priess Season 9 Episode 90
DR ETHELLE LORD - Learn about Transactional Dementia Intelligence: A Systemic Model of Dementia Care
Love Conquers Alz
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Love Conquers Alz
DR ETHELLE LORD - Learn about Transactional Dementia Intelligence: A Systemic Model of Dementia Care
Jun 02, 2024 Season 9 Episode 90
Dr. Ethelle Lord, Susie Singer Carter and Don Priess

SEASON 9 Premiere!
Episode 90 features our esteemed guest, Dr. Ethelle Lord, is an author, practitioner, educator, management coach, presenter, mother and grandmother, and a pioneer in the containment of dementia.     

Spending 21 years in the care of her husband Larry, living with vascular dementia and Alzheimer’s truly motivated Dr. Lord's career path as a Global Dementia Care Shape and the founding president of the International Caregivers Association, a Dementia-Management-Consultant and Creator of the “Transactional Dementia Intelligence” or TDI business model of dementia care, a WHOLE SYSTEM which includes management, training, care, and coaching. 

She has also authored the enlightening book, "Alzheimer and Dementia Coaching: Taking a Systems Approach in Creating an Alzheimer's Friendly Healthcare Workforce."

As Dr. Lord says, “One of the biggest challenges people face is the lack of basic information on where to begin, what to do, and how to do it.” Well this dementia warrior is helping the world, face those challenges -  and Don and I were honored to have her with us on Love Conquers Alz!

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Show Notes Transcript

SEASON 9 Premiere!
Episode 90 features our esteemed guest, Dr. Ethelle Lord, is an author, practitioner, educator, management coach, presenter, mother and grandmother, and a pioneer in the containment of dementia.     

Spending 21 years in the care of her husband Larry, living with vascular dementia and Alzheimer’s truly motivated Dr. Lord's career path as a Global Dementia Care Shape and the founding president of the International Caregivers Association, a Dementia-Management-Consultant and Creator of the “Transactional Dementia Intelligence” or TDI business model of dementia care, a WHOLE SYSTEM which includes management, training, care, and coaching. 

She has also authored the enlightening book, "Alzheimer and Dementia Coaching: Taking a Systems Approach in Creating an Alzheimer's Friendly Healthcare Workforce."

As Dr. Lord says, “One of the biggest challenges people face is the lack of basic information on where to begin, what to do, and how to do it.” Well this dementia warrior is helping the world, face those challenges -  and Don and I were honored to have her with us on Love Conquers Alz!

Buzzsprout - Let's get your podcast launched!
Start for FREE

Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.

Support the Show.

JOIN THE MOVEMENT FOR NURSING HOME REFORM BY SUPPORTING THE COMPLETION OF OUR DOCUMENTARY "NO COUNTRY FOR OLD PEOPLE" BY MAKING A TAX DEDUCTIBLE DONATION THROUGH THE NATIONAL CONSUMER VOICE HERE or GO FUND ME
Follow us on Twitter, FB, IG, & TiK Tok 💜
Listen on your favorite platform 💜
If you like what you hear leave us some love. 💜

Don Priess:

When the world has gotcha down, and Alzheimer's sucks, it's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is Love Conquers Alz, a real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now, here are your hosts Susie Singer, Carter, and me, Don Priess

Susie Singer Carter:

Hello, I'm Susie singer Carter.

Don Priess:

And I'm Don Priess. And this is love conquers all. Hello, Susan.

Susie Singer Carter:

Hello, Donald. How's it going?

Don Priess:

Terrific. It's a lovely day outside, we actually getting some, you know, actually weather more than 61 degrees for the first time in forever. Yeah,

Susie Singer Carter:

we're not going to talk about weather. Are we?

Don Priess:

No, no, just wanted to I looked outside. And that's what came to mind. So. So what's happening?

Susie Singer Carter:

So not much was happening. Well, we're still still brain dead from from, we didn't finish in our documentary, folks. So this is very exciting. And we just doing like all the spit and polish on new country for old people. And, you know, I'm gonna want to thank everybody for who has been amazing supporters of this project, financially and also just emotionally and spiritually and in our in our vision vision, you know, and I think that we can't thank you enough because it this has been a beast of a project. And we are, we are standing at the finish line. Now, what do we do with it? That's the next big streamers, which is like, you know, a case, if anyone isn't in the entertainment industry, you probably won't know how difficult it is. Now, the industry is so changed, and it's just turbulent. And not you. There's no rhyme or reason. in it. It's just like the wild wild west out there. So we're, we're forging ahead and trying to to, to navigate this and find the best home for No Country for Old people so that the most people can see it. Because it's really important.

Don Priess:

Yeah, because everyone just says, Oh, just put it on Netflix. Not that quite that easy. But Sure. Let's do that. Right.

Susie Singer Carter:

Right. Yeah. And what's interesting is that, you know, like, we have another film called my mom and the girl, which is about the day in the life of Alzheimer's with my mom with Valerie Harper, and, you know, and that, that got a lot of distribution. And it's on PBS, and PBS. Everyone thinks, oh, that's, that's fantastic, which it is, but it's really more bragging rights, because it doesn't really reach the audience that we need to reach. So so we're trying to to throw a really wide net

Don Priess:

very wide because everyone needs to see this. It's such an important message. Yeah, but

Susie Singer Carter:

yeah, onward. Yes. Yeah. If anybody has any connections to the big streamers, we welcome them. We will. We will. Thank you immensely. Yes. We're trying to get into all of them. Any of them. And, and Hulu and Paramount. Apple plus would be great. And Amazon, do I mention Amazon? And now

Don Priess:

you did. No, I

Susie Singer Carter:

did. So yeah. Anything with you don anything exciting? No,

Don Priess:

nothing. I mean, you know, exciting is just the fact that every day we get closer to finishing, that's exciting. So but no, nothing. Nothing in particular.

Susie Singer Carter:

Sleep for you. Sleep is exciting. Sleep. It's very exciting.

Don Priess:

I I would know, haven't had it in about 22 years. But yeah, let's go for that. But not now. We are not sleeping. Now. We have an amazing guest today. Yeah,

Susie Singer Carter:

yeah. Who's really it's, you know what, I have a lot of questions for our guests. So get

Don Priess:

she has a lot of answers. All right. Here we go. Author practitioner, educator, management coach, presenter, mother and grandmother. Dr. Attell. Lord is a pioneer in the containment of dementia. Spending 21 years in the care of her husband Larry living with vascular dementia and Alzheimer's truly motivated her career path. A global Dementia Care shaper she has The founding president of the International caregivers Association, a dementia management consultant, and creator of the transactional dementia intelligence or TDI business model of dementia care, a whole system, which includes management, training, care and coaching. She has also authored the enlightening book, Alzheimer's and dementia coaching, taking a systems approach and creating an Alzheimer's friendly healthcare workforce. As Dr. Lord says, one of the biggest challenges people face is the lack of basic information on where to begin what to do and how to do it. Well, this dementia warrior is helping the world face those challenges. And we are honored to have her with us today. So let's say hello to Dr. Attell. Lord. Hello, Dr. Lord. Thank

Dr. Ethelle Lord:

you for having me today. I appreciate it. Nice to meet.

Susie Singer Carter:

You, you're very I've been looking forward to talking to you for a long time. And, you know, social media is so incredible because it opens our world to people that we wouldn't normally get a chance to, you know, be be aware of, and I've been aware of your work. And I'm such a fan. And I'm a fan of, of your approach. And if you don't mind, I kind of want to just jump in and have you explain exactly what your approach is, in terms of this system that you've created the trend, the transactional, which I want to know why it's called transactional dementia intelligence. TBI.

Dr. Ethelle Lord:

Thank you. It's a system because we have a systemic problem. You cannot approach a systemic problem without a systems approach. And so the transactional dementia intelligence business model is a systemic systemic solution to the problem we have now really, basically to say than one sentence, it's opening a closed system. We have a closed system in dementia care today, and even long term care all of it everywhere is a closed system. And I'm not sure if you're aware that anytime you have a closed system, you're open to neglect, abuse, and death.

Susie Singer Carter:

We are aware.

Dr. Ethelle Lord:

So we are the first ones to propose something to open the system with this TDI model, and I'm sure others will come down the pike. We're just one example. But we happen to be the first example we have to start with one.

Susie Singer Carter:

Before you go on, can you just tell me what a closed system is? So we have a framework for what that means?

Dr. Ethelle Lord:

Yes, a closed system. Let me give you a couple of examples. Like we have some groups, religious groups, they're closed, you have to follow all their dogmas and all that and the very strict. And if you look really closely, there's abuse in those systems, politically, the same thing. So in the long term care system, you can put your mother in a long term care system or your father. They'll welcome them as a resident and a client, or whatever they may call them. But they don't welcome you. Right. They don't want your advice. They don't want to see you. They pretend to want to see you, but they are very uncomfortable. And if you look at my latest post on LinkedIn, you'll see I have opened that that can of worms. I've published many videos that show you the abuse that goes on on a daily basis. We don't see that. I was just visiting nursing home this weekend in Maine. And the person I was visiting is a lady 89 years old. They said she threw herself out of her chair just the night before because she wanted attention. It's horrible. What happens. Horrible, it happens everywhere. So we want to open that system. And by opening it I mean, we're going to include family caregivers and train them as TDI care partners. And they will be wearing a lapel pin that says that so you can recognize that person has taken training and is allowed there 24 hours a day. So we're going to increase the staff we're going to see when third person falls down or is about to fall down. Somebody is going to notice that somebody is abused as being beaten up or slapped with whatever they have to slap them with. It's going to stop because there'll be eyes there a lot of more eyes and we need more eyes. The TDI also is structured because I have a background in management and leadership. I made sure that the system the approach that I created, was also favorable for the ROI return on investment because that's what is governing the world today. Globally, it's money that you can make. Well, the turnover and burnout is in the CNA, which is certified nursing assistant is over 100% over 100% in the United States. So if you just take that one, figure one classification, they're gonna make money, because the turnover won't be there. Why? Because the system I've created requires six hours of training for CNAs, but eight hour pay, they want leave, they will be trained every day, they will be supported by a dementia coach at the center of the organizational chart. And they'll be trained by that person supported everything know, even nurses and doctors right now, in long term care. There's no support for anyone you're on your own. Most administrators are simply managers for the business owner. And so they look at at how they can fill the beds or not filled them, whatever it's it's more advantageous. Financially, they'll do that. They'll take that step. With the TDI it's not a program that we sell, it's a program we license, why do we license it, we license it so we can keep control over the quality quality control. We want to make sure those CNAs do not work more than six hours, but they receive eight hours pay. We want to make sure that the dementia coach is there every day, to intervene with any challenges that come up. When I was visiting this weekend, for example, one of the resident was speaking French. There were no workers who could understand her. I was there and I converse with her. She was very excited, she wanted to go home, and she wants to get out of her wheelchair and walk home. I was able to calm her down, but nobody there could do that. Right.

Susie Singer Carter:

Right. Right. So, you know, this is this is touching very closely to our documentary and the kinds of issues that we're dealing with, right with the systemic issues and, and which are pervasive, and especially when you're dealing with people who have dementia with you know, in terms of ableism. So, my mom had Alzheimer's and in the people that are easily ignored are going to be ignored. They're the first ones to be ignored and dismissed and neglected and abused. And, and, you know, and nobody is trained, like you said, in dementia or Alzheimer's care. Really nobody is there's so much misunderstanding and assumptions and stigma. And from in the end, it's rampid in the healthcare system, it's not just you know, the world it is, you know, or civilians, as it were, it is the health care system that really is untrained. So, that said, how do you get this incredible system to be a part? How do you get it accepted and embraced to be licensed, when we know that these are, you know, for the most part, our long term care are overrun by private equity, who don't really care about the quality, they care about the profit.

Dr. Ethelle Lord:

That's right. So that's why including profit in it. It's very attractive, they're going to make more money, there's no doubt about it. What's attractive about it is that we take the system you have now the facility not the system, but the facility that they that is exist in existence, and we adapt to that facility. Let me tell you that in 10 years from now, 20 years from now, you want to see what you see today. Because one thing one requirement of the TDI licensing is to remove not only unlock but remove the memory care unit doors that are locked right now they call them locked units. Please remove that that is absolutely crucial. That has to be removed and has to be free circulation. In 1020 years, I can see the entire facility open and people can walk out for to give me an example that lady that wanted to go home. I would have been able to take her outside. Right I would have been able to push her wheelchair and talk with her until she changed her mind and we could return to hers her space. The reason that those units have been instituted is truly to protect the staff not to protect the residents. I have seen people die behind those doors. I don't think that's acceptable. Mo, and therefore I don't I find the system no longer acceptable. That's why I created this new business model this new systems approach to dementia care. And I can tell you, Susan, that what's the good news about it? Is it going to affect the entire healthcare system? Because if they could put a coach in hospitals, in Psych units, we would do better with patients. So we need to look at the whole healthcare system. I know they're changing with AI. Now there's a lot of changes going on, that maybe this is the right time to introduce the TDI because everybody seems to be dissatisfied with what's going on. So you were asking me what transactional means. Transactional means exactly that I want a person to be able to, like I did this weekend, communicate with this person. One time I had a man that was chasing me down the hall, a resident with dementia, and he was in tears. And I came back, I said, let's go back to talk to the nurse. When we got to the desk, and the nurse said, I said he wants to talk to his brother. And she said, Well, his brother died. And he was pounding on the counter, I want to talk to my brother, I want to talk to my brother. And I said, and the nurse said he died and she had tears in her eyes. And I said, That's so easy to fix. I started pounding with him, and I said, You love your brother, don't you and He loves you. And the pounding stopped immediately. Because because your brain is hardwired for feelings. It's not hardwired for reasoning or logic. It's it's feeling sad, mad, glad and scared. And so if the person that's dealing with somebody with dementia cannot get down to the right side of their brain and look at feelings in that person, they never understand them. And it's only a Skel escalates, goes to, to anger, and then maybe some aggression as well. Dementia is not an aggressive condition, at all, is the way that they are treated. And misunderstood. Right. Is that we want to agree with you. No, yes,

Susie Singer Carter:

I agree with you. 100%. I mean, I couldn't agree with you more. Again, I just maybe I just want to understand, I love all of what you're saying everything is is spot on there isn't you know, like I learned the hard way, like most of us because we aren't trained in it. Right. And and, and, you know, I feel like I got really good at it. And my mom and I could talk with no words from her. We had full on conversations, though. For sure we did. And you know, I had her laughing I had her mug, swooning. And you know, the whole thing. She She was there that took that took, you know, patience and figuring out, you know, like you do with children. And I'm not infantilizing. I'm just saying when your brain works a certain way it works a certain way. So you lean into the strengths, which are like you said, emotions, feelings. So Anywho. How do we get this corrupt system to see like you said the value financial value in it? Is there is that? Are you being successful in it now? Or are you still working that out? I'm fascinated to hear this?

Dr. Ethelle Lord:

Well, first of all, it just we've just launched a program late last fall. So we're negotiating now with and talk in talking sessions with larger organizations. There is money definitely for them to make. But let me tell you as it is, right now, those systems are unsustainable. They cannot sustain those much longer. And so the government keeps coming out with new regulations and new rules. And it's as thick as you know, you can you can measure it, it's very thick. And so this is going to simplify things. Because we're putting the pressure or removing the pressure from management and owners, and also the pressure. That's the way they're treating staff is unbelievable. It's almost they're like slaves. So please stop that. Please stop that. We want to make sure that, for example, nurses and CNAs are trained but tested on a regular basis, not to see if they pass or they don't pass. We want to keep every one that that needs to be there. But we want to know where they might need more information. They might need more support more coaching. That's the purpose of the thing is not to punish anyone and is for for the dementia coach to take the pressure off top management and The rest of them. And the TDI is really training everyone from owners, to janitors and family caregivers in between. Now, we never start with saying, Susan, you have a nice business we would like you to, to introduce a TDI we want to serve, we want to assess your, your capabilities for so we give them a new evaluation sheet that they need to, because I've already refused some people. Why? Because I saw they were like slum landlords, they were there just to make the money. And we don't take those people, those people will never change.

Don Priess:

So what are such a large there's such a large percentage now that are the private equity that are making, you know, handle money, hand over fist that won't care, as you say, but there's so many of them that are that it's it's, it's probably the majority now by far is private equity. So how do we get around that? Or do we just say, you know, what, like, you just said, we can't fix that. But we're going to do as much as we can with those who are not? That's

Dr. Ethelle Lord:

right. That's what we'll do. We'll step over those absolutely will refuse them. Eventually, they'll see that they're not making the they're not getting the business. Because, like you Susan, wouldn't you rather put your mother in a TDI facility? Then? Where you know, okay, yeah, that's what we're looking at. And that's what people want right now create competition.

Susie Singer Carter:

But it also educated Yes, competition, and it's educating the public to understand that there is a difference in care. Right. So, so that, you know, they can go in and go, Well, do you have this kind of service? Do you do provide this? And if they don't, then you look elsewhere? That, you know, one of our one of our interviewees who's a simply man in New York was saying, that's one of his, you know, cries is to say, we need competition, because without competition, everything is just staying the same. You know, you'll, you'll hear in our documentary how the chaplain told me, my mum, don't worry about because she's got she has dementia, she has holes in her brain, you don't have to worry about her. She doesn't know anything. And I said, I think you got it wrong. Think you got the holes in your brain? You don't know. You don't know anything about Alzheimer's clearly. But you know, this is what you know. And that is that's that's, it's a horrifying fact. But that you know, that we have these professionals that don't that are working in elder care, where dementia is one of the you know, the main issues that we deal with as we grow older, one form or another, and yet they don't have any understanding of it. And so people are being basically warehoused in these kinds of situations where they're just billing and making money off of them. Yes.

Dr. Ethelle Lord:

And to follow up on Don some message just a minute ago, they're not only warehouse, they're actually doing elder trafficking, which is unacceptable. The other thing is that you have to when you see the holes in the brain, what happens with dementia to explain it quickly. There's a good theory behind it, and I was the one to discover it. So I'm teaching it now in the TDI certification program. We have two sides who are bringing a right brain and left brain. Now both of us are using right and left right now when we get to emotions, we're into the right brain where we get to asking questions, answering questions, were into our left brain, a person living with dementia, most of their right brain, and they retired their left brain completely. Now you can imagine if somebody comes to a person that's in their right brain, they no longer use their left brain. And they say to them, what did you have for breakfast today? That's a question that requires left brain information. And they don't have it. So all they're doing, they're pushing them further into their, their sadness, of losing memory, and then they may get angry because they're embarrassed, whatever it is. So unless the providers which means the doctors, the physical therapists, the nurses, the CNAs, even your janitor, if they do not enter that room, with their left brain and already functioning, they will not be able to communicate with that person living with dementia is very sad. After that, after they communicate with them, they can go to the left brain because the nurse might have to do something a treatment or something that's a left brain property. It's not right. And so we train people like that we have a very, like a 10 week training to get to become a dementia coach.

Susie Singer Carter:

It's it's great. It's wonderful. It's something and I think I was reading in your in your A PDF that you sent about, you know, family members getting that kind of education because it would have saved us a lot of stress. You know, my mom lived with Alzheimer's for 16 years. And so we learned by rote, but it took, you know, it took a while, and we cared about her. So, you know, we were, we were really, at least I was in my daughters were very interested in figuring out how to make the best of the situation. And so, you know, but not everybody has a family or family that has the time to, you know, invest in learning as they're tripping. So I think, you know, in inserting what you add your education, that kind of, of knowledge is so important. And it should happen, like early on.

Dr. Ethelle Lord:

Yes, actually. Very, very good. And I liked the point that you raised about the family caregiving, because even though your mother was in suits, institutionalized family caregiving, at that point, you could have gone to the dementia coach, and say, can you tell us how to better do here, because we see my mother is not, is not understanding what I want to do. The dementia coach has all available solutions for families, for workers for doctors, I had doctors that came in and did not know how to approach my husband, and I'm sure you saw that with your mother. I had to fire a couple of doctors, because they just didn't seem to want to get it. And they didn't ask for it. I had the oldest, the only doctor that asked me was an older Doctor ready to retire. And he said, Please teach me.

Susie Singer Carter:

Ya know, there, it's, it's, it's actually horrifying. I mean, I remember when my mom was in the early stages, and I would take her to the doctor and the doctor, would they be lose their patients really? You know, and, and really, it they actually exasperated any kind of behavior that they didn't want by asking her questions that she couldn't answer. So my mom being you know, the force that she was she was trying with, with all her, you know, sense of humor and her Jawad Aviv to like, you know, step up and really, you know, meet what they were asking for, but it couldn't. And instead it just it I know what you said it, I certainly did embarrass her. And it certainly did hurt her. You know, and I did a lot of damage control. And that's just so unfair. It's so unkind.

Dr. Ethelle Lord:

Yes, that's right. And even when for dental care with my husband, the dentist did no know how to they were afraid. Why? Because Because because there's a there's something out there. People say, I hear that all the time that people can be aggressive when they have dementia. Or the worst one I heard the other day is a woman said, my sister is living with her husband and he's been diagnosed with dementia, and they sleep together. Do you think she can catch it that way? Oh, yes. Yes, yes. So those kinds of things, you know, they can be answered by the dementia coach. Also, when you go to the dentist, the dementia coach could prepare you to help your mother helped me with my husband to do better. And I use a lot of Reiki, you know, to call my husband down and also to communicate with him once. Once he couldn't speak anymore. Use Reiki master Reiki was helping me to understand him better. That's

Susie Singer Carter:

amazing. Can I tell you a really funny story really fast, funny story. My mom needed to get a biopsy when she was living with me that she had, perhaps a mammogram came back and they needed to do a quick biopsy. And I took her to the doctor and they were in they said we're in the in, you know, waiting and radiation and they said, Okay, normos next, and I said, Okay, do you want me to go in with you? Oh, no, we were fine. I said, you know, she has Alzheimer's, right? That we're fine. Wasn't 30 seconds. See here? We're back out there with her. She's like, I'm not getting on that table. Are you kidding me? Get me the hell alone. Get away from me. And so I said, maybe you need to reschedule. I said, Are you kidding? No, we're here. I'm going in. I put on the coat. I got under the table because she had to go like sit on this table with a hole in it. Right for the boob. And I said, I sang songs. I made her laugh. I did. We got that biopsy. That's like, we're not leaving. But I mean, they don't know. They didn't know. They were like, they had no clue. 30 seconds. They were like, Yeah, we can't do it.

Dr. Ethelle Lord:

But it was still traumatic for your mother at first. Sure. And one thing they asked me for my husband, they wanted to do colonoscopy and I said no, he has Dementia. And there's no more exams of that sort for him. He was live and he lived for 21 years very well.

Don Priess:

So, because because family is such a big component of TDI, and that Susie said, not everyone has family or not everyone has family who care enough to get involved. How does it balance out? For those who do not have family? You know, how does this a staff have to? I mean, how has that worked into the equation? So everyone gets similar care?

Dr. Ethelle Lord:

Right? Well, when I was my husband was in long term care, I acted as a dementia coach, and I was the family member for a lot of families. Because you're right, a lot of them don't have families or the families doesn't want to get involved period. I've heard of a story where the man brought his mother in and said, Don't call me only call me when she's dead. So that person was left alone. And with the TDI, we look for a small percentage, not every family caregiver will qualify to be a TDI care partner, they have to be well balanced, they have to be intelligent enough to understand the training. And they have to be willing to show up. So we have a lot of people that wanted me out, we have a lot of people that want to do that, because they want to be there for the last breath. They want to be there to the end of life. That's what commitment means. When you're married, or you have family. If it's your mother or father, you want to be there. But some people don't. And that's fine. We don't we don't discard that we don't look down on them. We just take the ones just like the organization's the ones that will pass the assessment and are willing to do it and trained and they have a dementia coach to back them up.

Don Priess:

Is there any component of leaving this to me because I know Suzy, when her mom lived with her for a year, she still needed a caregiver with her also to help. And for a while she would be going to these agencies, and they'd be sending over these caregivers who were, you know, supposedly trained in Alzheimer's. And they were just having one of them after an hour was like, I'm out of here, you know. And Eric

Susie Singer Carter:

was walking, talking and she was going to that stage

Don Priess:

wasn't mean she but she wasn't mean she was just like, I don't have

Susie Singer Carter:

Alzheimer's, you got Alzheimer's? Not me. You're crazy. Yeah. She was in denial. And you know, and then can

Don Priess:

can this system be used? For the I mean, could this type of training be used? And that because a lot of people are in that situation? Where they're not in a particular facility, but they are utilizing those? Those types of caregivers?

Susie Singer Carter:

Outside caregivers? Yeah, yeah.

Dr. Ethelle Lord:

When we, when we, when we say, dementia care, we involve healthcare, home health care, home care, assisted living, long term care day brings all those system wherever you deal with dementia care, you ought to be trained for it. So what you just described is I went through that as well. So it was a one time there was a woman that came in and she happened to shuffle her feet. And my husband said, I don't want her she shuffling your feet too much. And it was easy to replace people because none of them had training. None of them had trained, right. And so when they came into my home, I had to train them the best that I could, but with limited responsibilities, because I could see they had no training whatsoever. And I understood they weren't paying very the paid very well as either. That's why we included that six hour work for eight hour pay is much better, right? And we don't want we don't want shifts, even nurses cannot work long shifts in our system, right? They can't afford double shift like they are asking for them to do now. That has to stop. So it's going to change everything. But Susan, you would be involved you would have been trained as a care, TDI care partner, and we would have welcomed you and you would have had a ball.

Susie Singer Carter:

Oh, yeah, no, I, I was I would have been up for it. I was up for it. Anyway, I learned on my own. I figured it out, you know, but I was motivated. I you know, it was it was, you know, if I wasn't going to cure it, which I thought I would try. I thought I was going to cure it. That didn't work out. So I can't cure it. I will teach it who's boss. And I tried my best but, you know, I would I find it very frustrating that and, you know, and I'm sure you do, too, that, you know, we all know, as doctors know this for a fact that, you know, a very large percentage of our well being starts here, right? And so, you know and It is it's so important, you know, when you're going into surgery, and you know, you'll hear doctors, you know, you gotta go in with a good, good, you know, positive framework, and we know that it helps healing, we know that it's not Uyu it's for real, because our bodies are our minds are very strong. And for some reason, you know, after a certain age, well, we know what the reason is, it's called ageism, that component of the healthcare system is not addressed. And so it just becomes, you know, addressing the physical needs, you know, and, and, and forgetting about the other, the other component, the, the mental, the emotional component of well being, you know, and I would often say that to the facility, what Ramon was out is like, what quality of life are we doing here? Like, what is the quality? Like, you know, let her eat, she wants to eat, that's her life is eating, you know, if she chokes, she chokes, but staring at a wall with nothing to do, and that is not life. And, you know, and I don't know why it is not part of, you know, geriatrics that we don't deal with that part of living, you know, otherwise, let's just all take a pill after a certain age, right? I'm not I'm being funny, but not, you know, I

Dr. Ethelle Lord:

think you know the answer already. So, our society does not respect the elderly. And yet, it's the most beautiful part of life. Because by then you have experience, you can relax, you can say whatever you want, you know how to do things, you've seen life, you look at the younger ones. And you wonder if they're suffering, because you have suffered, you know, what it's all about, you have empathy. So our society needs to start to understand that, just like they do in other societies, that there's a lot of wisdom in the elderly. Let's go and see what that is. And you're right, there is not enough life. There's not enough activities that are really what they call, you know, centered, centered care. For, you know, you're looking at what the person likes or dislikes, and you meet those requirements. That's just to me, I've seen so much of it. And I've heard so much that I think it's just words, let me see the action. I want to see them in action.

Susie Singer Carter:

Right? I remember, you know, I took my mom out of memory care, right? Like she wasn't supposed to go into memory care. My stepfather who didn't have dementia, passed away, they were just moving to a new facility together, assisted living. And when he passed away, they said, Oh, well, she can't go into the regular side, because he's not there to be, you know, to help out. So they said, We're gonna put her in memory care. And I mean, within a month, I had her out because every time I got there, she was a my emotional Basket Case, like crying. She was like, and I remember when we first went in, or the first day, just getting back to what you were saying about activities. There was all these people sitting around a table cutting paper flowers, and my mother said, What am I three years old? Get me the hell out of here. What the hell is this? She goes to Z, don't leave me here. And I was like, I was like, What am I and you know, and then they start in, you know, which we addressed. And I documented that the gaslighting is like, you're just you have caregiver stress. This is what's best for your mom, trust us. She's this is good for this is safe. This is you know, it's for this is where she belongs. Donald tell you because we've been friends forever, like my daughter's and I went in there one day, and I said, grab her purses and start shoving her stuff in there. She's out, well, I'm taking her home. This is not a place to live. Nobody should live in those places like that. It's awful.

Dr. Ethelle Lord:

Well, it's similar to what I heard the other day, when you take when they take your keys away, because they can't drive out of safety and so on. It was recommended that somebody takes your keys for only one week, only one week and see how that feels. But I understand what you're saying. And person centered care is not what they do today. Most of the time, there's just very few instances I've seen. I've seen a program like that in Australia, in other countries, but in the United States, it doesn't matter what, what how much you pay. I had a friend from New York say, Oh my gosh. And you know, in New York, there are places that are very, very expensive. I imagined that the care is better. I said Not really. It doesn't mean because you pay

Don Priess:

It's better. It's interesting. My mom's in assisted living in She pays a lot dearly, dearly. And it's a beautiful, absolutely gorgeous facility. And they've got great food, a beautiful restaurant. And the one of the things we liked is the caregivers, they were very social with my mom, they just come, they'd sit down, they'd spend time with her, all of a sudden, they get the notice, no more socializing. It's taking up too much of the of the CNAs time, you know, and now they,

Dr. Ethelle Lord:

you know, don't I'm sorry to interrupt you, but it's a matter of time. And the people that are there, the CNAs, there's not that many. They allow them six to 16 patients per person. It's ridiculous. But imagine what the TV imagine with a TDI model, your mother would have you there, or Susan or myself would be visiting. And we would help her we would do the socializing.

Susie Singer Carter:

Right, right. Right. Yeah. I mean, and in terms of like, in terms of just to piggyback off what you just said, Dr. Lord, about, you know, all of us being involved in the system. You know, Medicaid, once a person outlives their their savings, and they have to go into Medicaid. Well, Medicaid doesn't account for those kinds of extras, which they consider extras, you know, and so, or Medicare, you know, as well, those all become extras that that, you know, it's really about keeping the body alive. And and the other parts aren't paid paid attention to that emotional component is not paid attention to. And it's not compensated through the programs that we have in place now.

Dr. Ethelle Lord:

Yes, it's very dangerous, we're looking at a future that is not very good. Unless the system's changes. It's very bleak. They're going to get rid of those people just like that, right? Because, as Hitler used to call them, they're, they're useless feeders. But that's not true. I'm telling you, their wisdom that each one of those people even with dementia, that's why my next book, a gift of dementia, and the dementia of our gifts of dementia, a gift that has yet to be unwrapped, is because it is a gift. I have learned so much from my husband, if he had not lived like that, I would I would be clueless of what dementia is. But it's beautiful.

Susie Singer Carter:

I second that emotion. I second that emotion. You know, I think everybody that's gone through this journey with me and my family, my friends have all been enriched by it, you know, as sad as it was, and is to lose those facilities. There's a whole nother way to look at life. Right? And so, you know, it is the epitome of Zen. It is in the moment. You can't live any more in the moment than that. That's all we have. We have. So to

Dr. Ethelle Lord:

know that they're pointing it to us, they're saying this

Susie Singer Carter:

is it. This is mana. This is mana right here. And that's really it. And I learned that I learned that with being with you know, like, I'm getting chills when I say that because it's true because I can it throws me back to being sitting next to my mom's bed and just, you know, surrendering, not thinking about where I have to be or where I was just surrendering to the song that I'm playing on my phone and singing along to and making sure that she's liking this song. You know, and that's all it was. It was that.

Dr. Ethelle Lord:

And you were sharing a gift that's natural. Susan. You were sharing nurturing. You're a nurturer. And your mother was just soaking it up. Yeah.

Susie Singer Carter:

Yeah,

Don Priess:

you can see it, you know, you can you could see it when it was happening. In every end. It's just literally moment to moment to moment. It's not about the past. It's not about what's coming that Suzy was just saying it's just it's literally that moment. And, you know, and for both for both the caregiver and for the person. I

Susie Singer Carter:

mean, we learn from our children, right, I learned from my children watching, you know, my children, like take these social risks that we don't do because they don't have any fears or they don't have any, you know, filters or they haven't been hurt yet. So they're very fearless. And like you said as you get older, you also get fearless, you lose your your filters because you you kind of got it you get it, you know? And I love that. So I love watching it and then what you know, we I got to I got my mom, we were all very grateful that my mom got to meet my grandma otter who was only got to meet her on Zoom because of dementia, I mean, because of COVID. And then when finally when the doors opened up, she finally got to see my mom in person. She was two years old and crawled right into bed with her, and was loving on her, looking at her face laying on her looking at her face, rubbing her patting her and say, Nanny, Nanny nanny, and the two of them just had a full conversation without any words.

Dr. Ethelle Lord:

That's beautiful. Thank you for sharing that. Yeah.

Susie Singer Carter:

Yeah, beautiful. Because they didn't need the words they knew each other.

Dr. Ethelle Lord:

They know because, again, I used to say CNAs. Before you enter a room, make sure your energy is positive. And you're relaxed. Because people with dementia will read energy faster than you can blink an eye.

Susie Singer Carter:

So true. So true. Children do the same thing. They get they're very perceptive. You know, when you don't have language taking over you are you connect this way? And so it is it's so important. I and I always did it in, you know, I don't know where it came from. But I always walked into my mom's room took a deep breath and was like, Hi, Mommy, I'm here. Your daughter, your favorite? Your favorite daughter. Okay, whatever. I am your only daughter, but I'm still your favorite. You know, just to remind her who I was without her having to guess. And be up to be up so that she would be up? Yes.

Dr. Ethelle Lord:

I remember one of the caregivers that my husband had. The private caregivers when he was still at home was she would come in dancing and singing into the room every time and I ended up that he asked to marry her. He said he wanted to marry her. I said, Well, I think we can arrange that. Ah, and he took his ring. Your

Susie Singer Carter:

Lord, I love you. You're so great. That's beautiful. Yes.

Dr. Ethelle Lord:

And then he was he had fallen in love when he was a young man, two young officers in the Air Force. And that came all back because old memories come back. And he said to me one day he says, I hope I won't offend you. I hope you won't be sad. I love you. But I've been thinking about this woman that I was in love with when I was younger, was a young officer. I said, you know if you give me the name, I'm just like, Colombo, I'll find her. And so he gave me the name. I found her in Chicago. And I kind of communicated with her and to the time of his death. She was sending him letters. She was calling him when he was able to talk. Who

Susie Singer Carter:

are you? You're so sweet. Oh my gosh. Isn't this a great story? You guys. I mean, this is the this is this is true love. That's love.

Dr. Ethelle Lord:

Yes, it is true love. We don't own love. We can only exercise when you want to deliver gifts. Yeah, he wanted to give her gifts for her birthday. And I did that we went out shopping so that he could have a full experience. But here's the gift for me. The gift of dementia and that the gift was I saw that young officer that I never knew. Oh,

Susie Singer Carter:

yeah. That's interesting. And you know what? I Okay, I'll match you with that. So all my mom my mom's life. I didn't know why but all of my great aunts my grandma's sisters and brothers on those the those who sort of CO raised my mom like they did back in the day. And she was in New Jersey. They all whenever they see her they come and visit they call her lovey that they never called her Norma it was lovey. That was her name. Done and done. All cards made out to lovey. And I never asked why didn't know why I didn't think about it. Because you know, you're self centered child, you don't know until you know. And as my mom progressed, and was in nursing home, and people I'd go to visit my mom and every hands down without any she wasn't even speaking at that point is your mom Norma. We love her. She's so loving. She's so affectionate. She's so and I said, Oh, that's where she got the name. That's why she's so it was lovey. And she was exactly like that the whole time to I mean, she's just people would walk by and when she could still talk. She'd go, You're beautiful. You're beautiful. And they'd go, thank you. Thank you. And she meant it. Yeah, she meant it. She meant it.

Don Priess:

But that came out that was even after she had stopped talking. The CNAs would always comment oh my gosh, I love your mother. I love she's so I mean everyone without her saying a word heard, that was

Susie Singer Carter:

a little girl. This was my mom who she was without all the other life that that weighs you down, right? So I got, I got the chance to see her as a little girl. With that freeze. I got to see her like that. So I shared that with her. And, and I'll tell you one of the things you'll love this as a dementia expert, when, like three months before she died, and she had stopped talking, and the only reason why she stopped talking was because she had been intubated. Anyway, they didn't give her she could she could have still talked. But she, they they went out your feed. I was talking to her and I was doing my dog and pony show and I was singing and I was trying to make her laugh. And out of nowhere, she just leaned forward and said, I love you. Like clear as day. Like, like it was ever my mom. And I don was in the room. And I was like, oh my god, mom, that was like a marathon you just ran, because I know how hard it was. But she needed to let me know. It never talked again. But that he did all those things that she had to find the words, bring them down, attach them and get them out the mouth. That's a lot. That's

Dr. Ethelle Lord:

a beautiful sentence to leave leave you with T shirt gave me by the way, I'm not a dementia expert. I'm just have knowledge. And I don't ever want to call myself an expert, I see experts on the on the LinkedIn program there that are maybe 20 years old or 30 years old. I can't imagine being experts. It's a long, you know, you need to live live a lifetime almost to say you're an expert. But I always say that we don't discover. We don't invent anything. So experts kind of insinuate you invented something, but we only discover things. They're all there to be discovered. It's up to you to discover them write

Don Priess:

good correction or know if there's any true I don't know if there's any true. There's so much unknown about dementia, that I don't know if anyone's really an expert. We

Dr. Ethelle Lord:

never, we never will.

Susie Singer Carter:

Yeah, right. Yeah. And it all comes down to, you know, individuals, what that what part of their everything we you know, there's so many factors to that come into play. So, yeah, it's interesting when to see a movie, a screening of a film or another film on on dementia last night. And, you know, it was it was very frustrating, no way been been having been through the whole journey. You know, and, and having made a film, you know, about Alzheimer's, and in a, in a narrative way, I was very careful to be very honest and open and, you know, as, as true as I could bringing in the comedy, but also bringing in the truth. You know, and I think that that, you know, it does just service, it does a disservice to the public both ways, if you sugarcoat it, or if you, you know, like, vilify it, you know, so you're only adding to the stigma of it. So, either way, it's bad, we really need to really understand the scope of it so that we, we don't, you know, dismiss it or, or, or ignore it, you know, right. Or

Don Priess:

fear it, you don't want to fear it, either.

Dr. Ethelle Lord:

That's right. The Oregon we're talking about is the brain and it's the most complex organ in the body. And we'll never understand that fully. And what works with one person may not work for another one. That's why the tips on dementia care are so important. Because you you can have a choice. You can try things, different things to make sure that you can shift the feelings of that person and make and make them feel safe and loved. That's the only thing they want to be safe and to be loved. Yeah,

Susie Singer Carter:

yeah, definitely. Just

Don Priess:

bringing back to the TDI. I just wanted to clarify, does the TDI program work with Medicare and MediCal facilities? Or is it just private pay? Or combination? There are no words

Dr. Ethelle Lord:

for every every facility, it does not matter if it's private pay, or Medicare or Medicaid. The Medicaid situation is that in this facility they have they can only take so many fill in so many beds with Medicaid because they pay so much less as less pay. So they they want to make money. There's billions of dollars being made daily in long term care. Don't fool yourself. They're not running out of it and they're not underpaid or anything. It's how they fill their beds. And of course, if you can pay with insurance, long term care insurance or if you have enough money that's that's the best way for them to do it. There are some that are totally private, the TDI will work very well with any system does not matter. Okay, great,

Susie Singer Carter:

thank you. But it is a matter of like whether that facility will incorporate it. And you know whether they're going to bring that system into their, their facility to use it on a on a consistent basis. Can someone can families request it and say, you know, I guess you can't, I mean, you can request it, but it doesn't mean it's going to happen. So what you do is look for a facility that that does incorporate, it

Dr. Ethelle Lord:

wouldn't be nice if families would say, Well, you heard about the TDI business model. Have you heard about it, let's inquire. But remember, they have to pass the assessment. If it's a type of business that's just in it for the money. And they provide very bad care and they intend to continue, we can detect that in the assessment stage. There's a period of few weeks that we do an assessment. And we're very honest about that. We'll tell them exactly what's right. And how

Don Priess:

many IDI facilities are there right now?

Dr. Ethelle Lord:

We don't We haven't signed anybody officially, but we're still discussing. And we, we will have them this year. I'm sure. We can have this discussion later on.

Don Priess:

I hope so.

Susie Singer Carter:

I really do. Yeah, it's like I, you know, learning about all these different models for like, the, the greenhouse model, you know, and the the Eden Project, and all those different, you know, all the person centered care for, you know, long term care, which is all really good. And it's well thought out. And and, you know, one of the interviews that we did for the documentary, I asked a hard question, and I said, you know, well, who is who is enforcing this, this construct this this paradigm of teaching? Or you know, or

Don Priess:

that's model management model,

Susie Singer Carter:

right? You know, because because, you know, you if you send your child to, to a Montessori school, there, there is licensing and there's and there's, you know, there's, you have to adhere to that program, or you will lose your license. And at the end, you know, the woman who was running this program, one of them not, it's, it's, it's an offshoot of the greenhouse, said, there really isn't anybody overseeing the licensing, or the quality control, and it's really up to the individual or, well, that just leaves everybody vulnerable. But

Don Priess:

just right back where we are, you know,

Susie Singer Carter:

it might sound good, you know, we you know, we've got a new and improved we are the,

Don Priess:

it's just a marketing tool at that point.

Dr. Ethelle Lord:

That's why we're licensing the TDI we're overseeing every step of it. They have to even present the curriculum, that dementia coach has to submit their curriculum, the visit that we visit the facilities on announced and we just straightened out, whatever, and we're there to support them. Absolutely support them the whole year, and is renewed every year. It's a yearly license, it's not a forever,

Susie Singer Carter:

have you thought about going to I'm sure you have going to CMS and and you know presenting this program to them as as to, you know, incorporate into their system.

Dr. Ethelle Lord:

Unfortunately, there are so large and I've been I've been I have approached to the government on this, but there's other things driving the government and not not necessarily when it makes sense. It's a better thing.

Don Priess:

That's like,

Dr. Ethelle Lord:

it's not it's not a sure thing, but I don't give up on them. I still continue. I know the Alzheimer's Association has a big say in everything that might go come down the pike. And that's been submitted to them, but they've been ignored it completely, because they probably feel is competition. less fun stories. They're their drives. Yeah,

Susie Singer Carter:

yeah, yeah. Yeah. Yeah. It's it's very complicated. But it's people

Dr. Ethelle Lord:

like you, Susie, that in New Dawn that can help us to change the course of dementia care. And I beg you that you did do that, please.

Susie Singer Carter:

I was just going to say that, that that's, that is our dream, my My dream is to, you know, awaken the collective conscience and really let people know that this is their future. And, you know, it's all of our future in and it's only going to get exponentially worse. If we don't nip it in the bud now, and we are the only thing that's going to change it. It's not going to be you know, new legislation because there's no one there to enforce that new legislation. That's just platitude. So we really need to take it into our own hands and really take our healthcare back. And, you know, and secure it, and ensure that we have, if we're going to try to live longer, which we all are doing, we really want to have long longevity. Well, you don't you want to have quality with it, too.

Dr. Ethelle Lord:

Yes, because we are all going to end up old, and we may, many of us will end up in, in a facility. Right? Because as Don said, we have neither no families. And one thing that the international caregivers Association strives for is inclusivity. And imagine those people have less family than most people. Absolutely, because sometimes they're abandoned by their original family. And if they're left alone, the partner is past passed on, I want the TDR care partner there, to love that person to support them to offer them safety. And know

Don Priess:

that even if you're paying 10 or $12,000 a month in a private, that does not guarantee the type of care that these people need, because those facilities still don't understand half of what to do. And, you know, we need something. It's not something like or TDI, you know, to be part of the systems. So whether you're getting being paid for by Medicare and Medicaid, or private pay, the care has to be correct, it doesn't just have to pay out a lot of money doesn't guarantee that

Susie Singer Carter:

you can't find a lobby folks don't buy the lobby, look behind the lobby, keep going really, really investigate, because lobbies can be very deceiving. Absolutely, right.

Dr. Ethelle Lord:

Yes, I agree. I agree. But the fact that we have a dementia coach in the center of the organization and one dementia coach in every site, that that business may own, so if they only have one then they only have one dementia coach, but if they have 600 different sites, we want 600 dementia coaches right. And right now as I know it, and I've seen it all workforce, health care workforce, we'd love to have some that kind of support that kind of training that kind of person that will come and fend for them when there's a problem.

Susie Singer Carter:

Absolutely. Wow, I love much better

Don Priess:

it is for the for the care for the health care provider for those CNAs those nurses, those doctors, if everyone you know had this knowledge in practice, their jobs would be so much easier. Well yeah, life would be so much better. Yeah.

Susie Singer Carter:

It's like sticking somebody who's a who's a manicurist and go here go go help them out on a fire it's absurd. It's insanity. It's insanity. We put unprepared and uneducated people and to help people and you know, it's just it's it's a disaster waiting to happen. Of course it is. Absolutely. Of course it is. Well, I Is there anything we left out that you wanted to mention before we wrap up this,

Dr. Ethelle Lord:

if anybody wants to get a hold of me they can get a hold of me at the International caregivers association.com website or ICA cares.com They can go through there and there's a Contact page, a lot of information on the TDI we have three different teams there. We have the leadership team, we have the Advisory Board, we have the consulting group also that goes into facilities and opens the door for the TDI lovely so very well qualified people all around me

Susie Singer Carter:

take advantage of it you guys you know it's there for the taking.

Don Priess:

Take advantage push for it push for it, start using your voice and say this is what we need. This is what we want. Yeah, yeah, let the facilities know let let everyone know that this is the type of thing that we absolutely must have in order to ensure you know safe health care from for everybody. Quality long term care and health care in general

Susie Singer Carter:

quality Yeah, like you have to push that you know you it's unfortunate but we do we have to advocate for ourselves and our loved ones and it will it takes it takes a megaphones and don't have the disease to please like me that does not work. That does not work. You have to be strong. Okay, well, we i You're delightful. I love what you're doing. You're are a warrior you are a warrior with The Heart of Gold.

Dr. Ethelle Lord:

Thank you. Yep. Thank you for saying that. Absolutely.

Susie Singer Carter:

Absolutely. It's, it's, it's a pleasure to know you, and I'm rooting for you. And I hope that our documentary makes some kind of shift and allows, you know, an open door for this everywhere. So important. Yes.

Dr. Ethelle Lord:

So I think you want to consider a documentarian just on the TDI to change the course of dementia care.

Susie Singer Carter:

After I get a break. It's like asking a woman who just had a baby when you're going to have your next baby I'm tired. No, I there's a lot of documentaries that need to be done. I hear you I hear you know, but it's true. It's true. Yeah. i Because, you know, I see that very clearly. It's the the it would write itself, it really would, you would write itself. Well, this has been very lovely. And it really plays to why we do the show, which is why don mats

Don Priess:

because love is powerful. Love is contagious, and love conquers all. We thank everyone for watching listening today. Please like, share, subscribe. Check out TDI for sure. And we'll see you next time.

Susie Singer Carter:

Yeah, and one more thing I know that you guys have a lot of different podcasts out there. And you know, right now there's so many and but you know, we've been doing this for four years now. And we we really do it because we love it. And we really love to bring you the best people and I feel like you know, Dr. Lord is one of them. So how have you all have a great, great week or till our next episode and we'll we'll be you'll hear from us then. Bye.

Don Priess:

See you then bye bye.