David's Alzheimer's Fight
Hosted by David Uhlfelder, who is facing early-stage Alzheimer’s with resilience and humor, alongside co-host Dr. Karen Gilbert, this podcast shines a light on living well with the disease. Together, they share personal stories, expert insights, and practical tips to help others navigate the journey with strength, knowledge, and hope.
David's Alzheimer's Fight
Beyond the Diagnosis: Mastering the Language of Dementia with Tino Negri // Part 1
Alzheimer’s educator Tino Negri shares powerful tools for caregivers — from the CART method to emotional communication — showing how to create real connections and ease frustration.
This podcast shares insights, not medical advice. Please consult a professional for your care. Welcome back to David's Alzheimer's Fight. I'm David and I'm here with my co-host, karen. Today we have someone extraordinary on our podcast, someone who lives this fight every single day with caregivers across South Florida. Say hello to Certified Alzheimer's Educator, tino Nigri.
Speaker 2:Tino, it is a true gift to have you with us today. You don't just educate and you are incredibly knowledgeable about Alzheimer's and the needs of caregivers, but you empower caregivers to take care of themselves as they learn new strategies for caring for their loved one.
Speaker 3:By the way, dave, in case you don't know and the listening audience doesn't know, I've been doing this for a long time and I met Karen 13 years ago and when I became an educator, the first person to ever train me was Karen. So I'm in good hands with her. And if I mess up, I got her as a wing person, so I'm not worried about it. So I could tell you a little bit about me and my background, where I come from. So came down from Long Island, new York, 13 years ago If you couldn't tell by my accent, that's where I'm from and my father-in-law because I just married his daughter asked me to come down and partner with him in a home care business, right? So I own a company called Comfort Care Senior Services. We're a private duty home care agency and I build a business with my family, my wife, my in-laws, scott and Irene, and my sister-in-law, melissa, all right, and she happens to be the Parkinson's expert and I'm the dementia guy, all right. So you know, first week in the business, my father-in-law says to me I need you to become an expert in Alzheimer's disease. And I found that coincidental. And I was telling you, dave, I'm not one for coincidences. I always say coincidences are nothing but God's way of staying anonymous in your life. What he didn't know about me was that all four of my grandparents had dementia and if I would have known then what I know now, I would have treated them differently, and I would have treated my mother differently because she was a caregiver. So when he asked me that, I was like this is my calling, so that's what I did. I became a national certified Alzheimer's educator by the NCBAC. I'm Florida Department of Elder Affairs certified, like Karen, to train professionals on this disease Nationwide for a program called Dementia Wise, which is a national program that teaches professionals and, you know, caregivers, not professional caregivers how to speak this language of dementia. And right now I am currently hosting 15 support groups free of charge for family caregivers who are living with their loved ones with dementia. It's my way of giving back and I enjoy every second of it.
Speaker 3:My job as an educator is to give people tools and help them, I guess, through their adversity, which we all have, by the way. I mean there's not one person that doesn't deal in adversity, you know, which we all have, by the way. I mean, there's not one person that doesn't deal in adversity. But this is the thing about adversity Through it we find our lessons in our life. Lessons are our tools and the more tools that we have, the better off we're going to be to help us cope and to help us get through With those lessons.
Speaker 3:Then comes your blessings. What are your blessings? Your victories, the small ones that lead to bigger ones, that lead to life-changing ones. But you can't forget your failures, and I promise you, in dementia care for the listening audience you're going to make mistakes, there's no doubt about it, but you'll learn from those mistakes. So with those lessons and those blessings, then, and only then, will come your joy. But the only way to get to the joy in life is by going through the pain. How do you know how good good is if you've never experienced or knew how bad bad was? Support groups help people through that adversity and also helps them change. Change is a scary thing for a lot of people. Most people don't like change. But doing the same things over and over again, expecting a different result, is the definition of what Insanity, and we all do it we all know that, yeah, we do it to ourselves almost every day.
Speaker 3:Change is good and it's growth and it's changing yourself, stretching yourself. And it's not only changing the way we think about this disease anymore, it's changing the way we speak about it. Nothing drives me more crazy or bananas. When someone walks up to me and they say my loved one is dying from Alzheimer's, I look them right in their eyes. I say they're not dying from anything, they're living with it. We just have to figure out a way to help them live their best life possible so, in turn, you, caregiver, can live your best life possible.
Speaker 1:Thank you, and it's so great to have you on. And so let's just dive in. What is the language of dementia?
Speaker 3:Well, you know the language, believe it or not, is common sense. But you'd be surprised how common sense is not so common With caregivers. They need to make a shift, all right, from doing 180 degrees now away from facts, logic and reasoning, and they need to focus on emotions, on feeling. Dementia care is all about the feeling and when people are trying to understand this language and redirect their loved ones redirecting is a big term. A lot of people say this word called redirect, but a lot of people don't know how to redirect. There's actually a trick to it. I actually love magic. I was talking to you guys about this the other day. Magic is the art of misdirection, where the trick happened right in front of you but really it happened three steps back and you just missed it. I give an example of a magic trick because I love magic. You guys want to see a magic trick.
Speaker 1:Sure.
Speaker 3:Yeah, all right. So if this hand, okay, represents someone with dementia I don't care what kind of dementia it is All right. This hand represents you as a caregiver. This little magic red ball, david, represents a behavior. Okay, this represents sundowning hallucinations, delusions, paranoia, repetitiveness, the questions we don't have answers. For Our jobs as caregivers is to put that little magic red ball in our hand, redirect the behavior out here to something a little more positive, so hopefully, when they get out here, they forget about what's bothering them in the first place, so you can get them to do whatever it is you want them to do.
Speaker 3:The problem with dementia is this they're always going to have a problem in their head. Did you see me put that ball in my mouth? Nope, that's the misdirection. Now I'm not going to show you my magic trick. That's mine, all right, but what I want to teach the audience is the art of redirecting behavior. Okay, there's a lot of steps to this process, but for time's sake, let me go through the first two steps at least, because the first two steps are the most important part, and if you screw up the first step, then you've got to start this trick all over again in redirecting All right.
Speaker 3:So the first trick in redirecting behavior is understanding nonverbal communication. Understanding nonverbal communication, all right. I would say 90% of the reason why most people act out in behaviors is because the one person in their life who they love the most, their one constant, their life preserver that is keeping them afloat, is off. This is why I tell caregivers all the time you need to give yourself a checkup from the neck up. All right, it's your face expressions, the rolling of your eyes, the huffing and puffing, the grinding of your teeth, the clenching of your fist, the tone in your voice. All of it has got a direct correlation to the people in your care because they pick up on the emotions. Okay, so we got to get us right.
Speaker 3:Now the second step in redirecting behavior. You got to get that first step right, all right, but the second step is called verbal communication. As the disease progresses, words start to escape us. When it hits the temporal lobes, ok, when the words start escaping us, we need to cut our sentences down from one, two, three words at a clip and we need to get more visual. Now, if you couldn't tell, I'm Italian, I speak with my hands all the time. All right, in dementia care, we have to get more visual when we're speaking to our loved ones. So I'll give you an example, dave, if I say to you in Italian okay, vini, come si ti di qui. Do you have any idea what I just said?
Speaker 1:No.
Speaker 3:No, but David, if I went like this to you, ready dave, vinnie, colman city to quit, what did I just say?
Speaker 1:come over here and sit down hey, you just spoke italian no, I was english 95 of the human language is visual.
Speaker 3:So stop with with the word so much, guys, and just get more visual. There's so many visual cues you can do out there. I mean you and I, we're going to take a walk that way. Come on, Everyone knows what that means. Or how about this? Do you know what I just said? Karen did? What did I just say?
Speaker 2:Let's get washed because you smell. You got it. I didn't say one word. Actually, from one of our support groups was a gentleman who was caring for his wife and he was lamenting to the group that he will prepare her toothbrush, he'll get it all ready and he will say to her go brush your teeth and she'll walk into the bathroom. But come right out over and over again. And it was the other members in the group, the other men in the group, who said stop telling her to brush her teeth, just go into the bathroom, pick up your brush and start. Absolutely right that the action, the mimicking, the demonstrating can go a lot further than trying to instruct over and over again with a lot less wear and tear on the caregiver.
Speaker 3:I love it. The mirroring effect is the key. It's the reflection of what they're watching. You know, that's the other part of the nonverbal communication is all about the visual. I love that, Karen.
Speaker 2:Now you also talk about caregivers giving themselves permission permission to slow down, to not react immediately. Tell us a little bit more about that.
Speaker 3:Slowing down, just relaxing, is always a good thing, but you got to understand this is a tough process for everybody and people are in this grieving type of process right. So they have to deal with so many different emotions as they're caring for their loved one with dementia. And you know what People are grieving and we all grieve, right, don't get me wrong. We all grieve. We all grieve in our own time, in our own way. You know people going through this process of the grieving process. Some people go through it because they are losing the loss of their loved one little by little.
Speaker 3:Every day I see people in my groups who have anticipatory grief. I just had a mental health counselor on my support group yesterday. 20, 30 people I'm sorry, 35 people showed up. This mental health counselor really dug in to anticipatory grief. This is the fear of the unknown right, the things that we have zero control over, and then eventually, when they pass which we're all going to do we have to grieve all over again. All right, so it's not, it's, it's the whole process behind the emotions that they have to. Yes, they have to change. They have to do this, you know, going 180 degrees away from facts, logic and reasoning. But on top of that, they're dealing with these emotions and that is so hard for so many caregivers, right?
Speaker 2:And then what about when they come to the realization that, constantly trying to correct their loved one, who's talking about home and it's the home they remember from decades ago, maybe not the home they live in now. Or when they say I have to go to work, and the caregiver's initial reaction is to say no, dad, you retired 20 years ago. How do we address those kinds of issues?
Speaker 3:There is a lot of tools in dementia care and, if you don't mind, I'm going to make a shift, okay, uh, to these tools, because you just mentioned a really powerful tool and I hope we can get into that now. I know that you wanted to maybe do that a little later, but let's get into it because you just asked the question, okay, okay, so there's a tool that I actually stole and you got to understand, I don't have an original thought in my head. I mean, everything I've learned is from other people, like you, karen, and a bunch of others, but this one tool that I actually learned from a caregiver that was on my support group. I looked at her, her name is Roberta. I said I am stealing that tool and I have been using this tool for years and everyone loves this tool. They want to laminate this tool, keep it on their person, so before they speak, they want to read it. Okay, I had a guy that one time says I'm going to tattoo that sucker to my arm. I go no, no, no, don't do that. But the tool is actually called CART. It's an acronym, all right, c-a-r-t, and this is what the tool stands for. Okay, c means never, ever correct your loved one. When you correct someone, instantly, in that moment, in that time you're telling that person that you're right, I'm wrong, you're smart, I'm stupid. And when you make someone feel stupid, it makes you want to jump over the table and grab you by your throat. I mean, that's my natural fight, flight and fright instinct. You have one, and so do people with dementia. Okay, so stop correcting people. You're just wasting your time.
Speaker 3:A stands for don't argue with them. You know they're going to draw out their little swords on a daily basis and they're going to say things like don't tell me what to do, I can do this without you, I don't need your help. I don't have dementia, you have dementia. We have one of two choices we can draw out our sword with a lot more logic and a lot more reasoning, right, and we can start slashing at them. I promise you you're going to lose that fight, so we need to learn how to disarm. How do you disarm someone who's constantly arguing with you? You got to agree right, like this, with everything. Everything they say okay, I want to go home, what time is it, what day is it? What month are we in? All of these things are part of the language of dementia, where people are constantly trying to argue with them and you're losing that fight. Okay, now R stands for don't reason with them. Why would you reason with someone who's losing their logic and reasoning? That's the definition of insanity that we talked about before. Stop reasoning with them.
Speaker 3:I had a woman in my support group. Her name is Kitty All right, I love Kitty. And I asked Kitty, can I steal the story and mention your name? She says absolutely, kitty, just put her loved one into a memory care. Okay, and she struggled with that decision. But when she took him out, to take him out to lunch, they were on the way back. Her husband looks at her in the car. He's like where are we going? She looked at him. Now she could have logically reasoned with him, but she didn't. She could have said you're going back to the memory care because you have dementia. She didn't do any of that. What she did? She looked at him and she said we're going back into the air conditioning and he went oh, thank God, because I'm hot, right, that is a great way to shift. And that's exactly what she did. She shifted, all right. Now the T in CARTS C-A-R-T stands for don't test them. Okay, the words, do you remember, should never, ever come out of your mouth, ever. Okay, so don't test them.
Speaker 3:I had a woman in my group. Her name was Liz. Okay, liz came to the group one day. She says Tino, every time I walk into my mom's memory care, all right, she instantly gets angry at me within five or 10 minutes. And one day she actually spit on me and she threw me out of the room. I said okay, liz, we have to figure out what this is. What's triggering her? Okay, so I said to her I go when you're walking in, what are you doing? What are you saying? She said that I read somewhere that cognitive stimulation games are good for their brain and I'm just trying to exercise my mom's brain Now in Liz's defense. All right, the reason why Liz is doing all of these exercises is because she misses her mom and she just wants a piece of her mother back.
Speaker 3:But by exercising her brain, she was doing nothing but setting her off into an agitated state. So I said, and she was walking and saying things like what's my name, what day is it? How many kids do you have? What are their names? Hey, ma, you had breakfast this morning. Do you remember what you had.
Speaker 3:And little by little, her agitation was going through the roof. So I said all right, liz, stop, stop, stop, stop, stop. So I taught her cart, okay, and I said to her Liz, what's the one thing that your mom loved the most in life? She had to think about that for a second and she says you know what she always loved? Her Dunkin' Donuts coffee. I said great, dunkin' Donuts.
Speaker 3:When was the last time you brought your mother a cup of Dunkin' Donuts coffee? She goes oh, it's been years since I brought her in there. I go, you're going to change that Next time you go to see mom. I want you to buy you and her a cup of Dunkin' Donuts coffee and I want you to make sure it says Dunkin' Donuts right on there. Okay, and when you walk in, liz, this is all I want you to say hey, mom, it's me, liz, your favorite daughter. Hey, look what I brought you and I want you to present this Dunkin' Donuts. I just want you to sit down with her, enjoy that cup of coffee. Don't correct her, don't argue, don't reason and don't stop testing her.
Speaker 3:She comes back to the group one month later. I said hey, liz, how are you doing? How did that go? She goes Tina, I'm never going back into that memory care again unless I have a Dunkin' Donuts coffee in my hand again, unless I have a Dunkin' Donuts coffee in my hand. She said it changed everything. She said the minute I walked in and I presented it, she looked at me, she grabbed it, she smelled it, she went you made my day. Liz made a shift and she started tapping into mom's long ago memories, her emotional memories that made her happy. Okay, so CART and there's a million examples this is a tool that people can adopt and they can start making those shifts and those changes.
Speaker 2:You know, it's natural to immediately try to correct, and that's we have to put the brakes on it. And several years ago at our annual conference we had former Governor Schreiber of Wisconsin. He had been caregiver for his wife and he talked about a lesson that he learned. She would repeatedly ask him about her father and initially he would tell her you know, your dad died. And it would of course upset her. It was like a fresh trauma every time and finally he learned to say, oh, he's out fishing, he's having a blast. And she would say, oh good, and they'd move on. And she would say, oh good, and they'd move on. So we can't bring someone with profound symptoms of dementia to the here and now. We have to go where they are and understand we cannot correct.
Speaker 2:When I worked in a skilled nursing facility years and years ago, I had a 96-year-old resident. Every time she saw me she'd roll up to me and say, karen, I need you to call my mother, and she would give me the phone number. And I'm sure that phone number was correct because it was coming out of her long-term memory which stays pretty good for a long time. I can't tell her her mother's gone. I can't say well, you're 96. I don't think your mother would be alive anymore. I can't go there.
Speaker 2:So instead we would talk about mother. That sounds like a New York phone number Does she live in New York? And she would say yes, and we'd have a discussion about where she lived and I would say you know, I forgot what's your mother's name. And she would tell me. And so that was kind of a redirection into a purposeful conversation and it met her need to kind of feel mother, versus us thinking she literally wants to get her mother on the phone, which is not possible. So it's all about remembering. We have to just enter their world. Where they think they are, which could be 20, 30, 40 years ago, is their reality.
Speaker 3:You're pinching something, and it just reminded me. You know the reason. I think early stages of this disease process is really the hardest for family caregivers, because they don't understand why their loved ones are doing what they're doing. And I would say this is the main reason why. Ok, and this is just, and I know you know this, but, and, david, I'm sure you know this too. And this is just, and I know you know this, but, and David, I'm sure you know this too.
Speaker 3:But the listening audience, I want you guys to understand that you know, in the early stages of the disease, ok, which is the hippocampal area, which is right behind that frontal lobe, in between the temporal lobes, we all have a small little seahorse looking creature in our brain called the hippocampus. And what this hippocampus does is it registers and it processes brand new information, right that comes in through all of our senses what we see, what we smell, taste, hear and feel. It takes it in, it registers, it processes it and stores it to a file cabinet called the memory bank. Now, the problem with Alzheimer's disease is that this is usually the first area of the brain that the disease attacks. So what happens? They can recall from their long ago, impressionable, emotional memories. These are called implicit memories. Okay, what they're forgetting is the details behind those memories and the new stuff. This is called explicit memories. And going back to what we were talking about what day is it, what time is it? What month are we in? Do we just have a holiday? You know there are so many different examples, you know and we talked about. You know, some people say things like I want to go home that's a big one. I hear that one a lot. I want to go home that's a big one. I hear that one a lot. I want to go home because they feel unsafe, or I need to get to work. Or they say things like I want to see mom. Okay, now, we have one or two ways to approach this and there's two different type of therapies. We have reality therapy and we have validation therapy. As you taught me from a long time ago, karen, reality therapy just doesn't work right when someone says something like I want to go home or no, let's go back to this one I'm missing mom. That's a big one. Okay, big one. Okay, I miss mom. Reality therapy is saying this Ready, your mom has been dead for 20 years. We've talked about this Don't you remember? What you're doing in that instant, in that moment in time, is you're making them relive that moment because they don't remember the detail that mom is dead. So shifting to validation therapy is a lot better.
Speaker 3:By saying things like it sounds like. I don't care how you start your sentences, I always started with it. Sounds like it seems like it feels like because you're connecting on their emotion. Right, that's exactly what you're doing. It sounds like you're missing mom. Yeah, Tell me about mom. What is it about mom that you miss the most? Is it her hugs? She's not here right now, but I can give you one of those. That's validation. You know you had a story, karen, about the going to work one with the machete or something like that. Tell everybody about that one.
Speaker 2:This is a situation that could have ended very badly. This was a gentleman who lived out west, in a farming community way west of western part of Palm Beach County, and he had worked in the fields. He had been retired for quite some time, but one early morning his memory took him back to when he would get up in the dark and head out to work, and the tool of his trade was his machete the home with that tool. Of course, they called 911 and called us. He was actually a gentleman attending one of our day centers and what we conveyed to law enforcement was he's not carrying a weapon, he's not out to hurt someone. He thinks he's going to work.
Speaker 2:Oh well, tell us about your work. And indeed, where was he found? Nine miles away from his home in the fields. He could get that far on foot, and so we worked with the family. The family now realized he really needs to be in a setting where there's 24-7 people awake and supervising, and he transitioned to an assisted living facility. But understanding his behavior to be an expression of him doing what's in his long-term memory was incredibly important. Tino, you are an incredible resource for caregivers. You're an incredible support group facilitator. You have a wealth of information. So we're going to stop for now, and then we will continue with the second half of what you shared with us today in the next episode. Thank you so much.
Speaker 1:Please note this podcast provides information only. Podcasts should not be considered professional advice or a substitute for professional advice. Viewers of the speakers do not necessarily reflect those of Alzheimer's, Community Care or David Ufelder. Listeners and viewers are encouraged to consult with appropriate professionals and are responsible for how the information provided is used.
