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
The Foundation of Dementia Care: Love, Purpose, and Therapeutic Communication with Tino Negri // Part 2
In Part 2, Alzheimer’s educator Tino Negri dives deeper into caregiving — from validation therapy and handling triggers to creating routines and a sense of purpose that bring calm and connection.
This podcast shares insights, not medical advice. Please consult a professional for your care.
Speaker 2:Welcome back to David's Alzheimer's Fight. I'm Karen Gilbert and we're happy today to bring you the second half of our discussion with Tino Negri, certified Alzheimer's educator and absolutely phenomenal support group facilitator. I have an untold number of caregivers that Tino has supported, continues to support, and we're anxious for you to hear the second half of what he can share about helping caregivers on their journey.
Speaker 3:You know I'm going to give a plug to Alzheimer's Community Care. Okay, because I love the organization. You guys have made such a difference in so many people's lives over the years and I'm so happy that I was able to be affiliated with you over this time. But Alzheimer's Community Care not only do they have what 11 day centers, but you guys also years ago started the Silver Alert and you also have that lost on foot and this is a perfect example of this gentleman walking nine miles. You want to talk about that really quick?
Speaker 2:Well, we will initially evaluate a particular patient's risk to actually leave a supervised setting. Certainly, if they've done it before, it will happen again. But we look at. Are they expressing things like I need to go to church, I need to get to work, I want to go shopping? When they're expressing those kinds of thoughts, we know they're thinking about going out the door, and so we will educate the caregiver how to de-escalate, how to redirect, and we will generally advise one of the electronic locator devices. They do not prevent a wandering event but they will help locate that person quickly, and we've had our program in place for 12 years.
Speaker 2:Caregivers have reported these events close to 300 times, 300 different elopement events. Not one has ever been injured. They've all been returned home safely. So it is an important risk that caregivers need to understand. If their loved one can walk or self-propel their wheelchair, they are at risk to leave a supervised setting. And so that's just another aspect.
Speaker 2:And part of that teaching that we do is understand that when behavior changes suddenly, there's usually something medical or medication-related going on, because we know that those experiencing significant dementia symptoms, as you said earlier, thrive on a routine. They get comfortable with a routine. So suddenly, if they're not following their routine, they're not sleeping like they usually do, they're not eating like they usually do they need more help than they needed yesterday. The disease doesn't change overnight. So when behavior changes overnight we get concerned that there's something medical medication related, or maybe they're experiencing pain that they cannot express. So we urge caregivers that is the moment Get them into their physician's office, because if you ignore those early signs A, you might experience an elopement event because they're desperate to find help. So they go out the door or whatever's going on becomes very serious. And now they wind up in an emergency room or in the hospital when, if it was nipped in the bud early, they could be treated at home, which is far superior.
Speaker 2:So that's a lot of the teaching that we do in that regard as well. So you know, a caregiver will often say well, I've got. All of a sudden he's doing this or's saying that and trying to go out the door. We have to again remind them. It generally means something new is provoking that behavior. You know, when we're starting to become ill, we know it. We might say to the people around us I don't know what it is, but I feel something coming on. They can't. They can't say my tooth hurts, can we go to the dentist? Or it hurts when I take a deep breath, or it hurts when I urinate. They're not able to put that thought together, so they will show it with a new, often challenging behavior.
Speaker 3:Which is that red ball, and I'm going to tell you this, karen, you mentioned two things that I want to transition to. Okay, you mentioned routines. Okay, so let's talk about routines really quick, because for me, routines they give a sense of structure, they give a sense of stability. And they give a sense of stability and they give a sense of predictability and I think you know, when people know what to expect, it reduces their anxiety, it reduces their stress, all right. Also, routines can help in implicit memories that we were talking about, like developing new emotional memories, and it could help with neuroplasticity, and I know you have a lot to do with that. It's like your biggest thing. You love neuroplasticity. Can you explain what neuroplasticity is?
Speaker 2:Neuroplasticity is the ability of the brain to actually learn or gain the ability to do new things, and the thought used to be, once you were out of your 20s you didn't have that capacity anymore. Now we know the capacity stays with us. We have to exercise it. So if we try to learn a new language, it so if we try to learn a new language, learn a new kind of puzzle, do things with our non-dominant hand, make that hand start to write, you're forcing the brain to make new connections.
Speaker 2:And retaining that ability is a real gift. But we have to think of ways to use it. So, certainly in the earlier stages, you can actually help your brain to your nerve cells and all your brain is is a bundle of 100 billion nerve cells. You could actually teach those nerve cells to bob and weave around an area that might have sustained a little damage. So obviously, the earlier in the disease we do that, the more improvement we can expect. But that is a wonderful capacity that we now know we can retain throughout life. But, just like anything else, if you do not use it you may lose it. So yes, we do a lot of training on how to retain that capacity for plasticity of the brain, or neuroplasticity as you referred to it.
Speaker 3:I still believe that when you're doing routines, caregivers, they need to set their boundaries, and it's more of an emotional boundary. A lot of people they get caught up in so many details, right, they're not a 30,000-foot overview type of person and they sweat the small stuff. And in dementia care you can't sweat the small stuff. You got to be able to go with the flow, right, and I think by setting these emotional boundaries up front, it will help people get through that routine a lot better and stop trying to force the issue, right. So now the other thing you mentioned and we can shift to this is going into triggers. Right, because you talked about we talked about triggers before. Triggers right, because you talked about we talked about triggers before. But I think to understand triggers, we need to understand what people with dementia are starting to go through, right? So what I do in the training, I always bring people back to the foundation, the baseline behind dementia care, and I think when caregivers understand this baseline, I think every tool that you get in dementia care you can stack right on top of this and your building will never crumble. Okay, so if you don't mind, I'd like to teach you guys the baseline behind dementia care. All right.
Speaker 3:So in our brains, in our souls, we only have two states of consciousness. Okay, we all have a cognitive state and we have an effective state. Now, the cognitive state is something that's locking with our loved ones. Okay, thinking, planning, organizing our thoughts, sequencing through tasks, logic, reasoning, executive function, impulse control, our personality and our behaviors are all done right up here, in that frontal lobe of the brain. Okay, responsible for all of it. When the cognitive state of consciousness starts to slip away from our loved ones, what starts to kick in in high gear is their effective state, right? So the effective state is the stuff that's hardwired in all of us. It's instinctual in nature, it's ingrained in our souls. There are six parts to the effective state of consciousness. I wish dementia would take away the first three, because the first three is what gives caregivers the most agita. You guys know what agita is. The agita is when you throw up in your mouth and you swallow it. Yeah, that's agita.
Speaker 3:Caregivers choke on these first three things, which are number one fear, and a lot of it, of it. I can't imagine waking up every day not knowing where I am, who I am, who my loved ones are, and being disconnected from reality. The fear that they feel on a daily basis must be overwhelming for them. It's our jobs as caregivers is to pull them out of that fear as fast as we possibly can. Okay, because with fear comes panic, with panic comes rage. This is their fight, flight and fright instinct. And when this kicks in, cortisol and adrenaline pump through our body. Cortisol and adrenaline is wonderful. When you're getting chased by a bear, it's not good when you have dementia.
Speaker 3:Now, the only thing that pulls people out of fear, panic and rage are the next three things, which I call my blessings okay, which are number one love and a lot of it. This one word, love, is, hands down, the best medication that we can give our loved ones. Okay, it's better than Numenda, aricept, exelon, razidine all the generic versions of those, the antipsychotics, the antidepressants, even Lekembe and Denaninib. Okay, this one-word drug, this love, is what cures people's spirits. Okay, and unfortunately, in caregiving, we're not doing this enough.
Speaker 3:I heard a quote recently. It goes like this okay, a connection between two people without emotional safety is nothing but an attachment. It's not love. How many people in our lives just feel attached to the person right in front of us out of guilt, out of obligation, out of duty, wedding vows that we took, making promises that we can't keep anymore. And then, on top of that, you got the pressures. You got the financial pressures, the peer pressures, right the kids. All of these pressures get pulled on top of us and what happens is we get pulled away from that one word that they desperately need we desperately need it too. We get pulled away from the emotional safety and all we feel is attached Okay, so we have to give back to that.
Speaker 3:Love after love comes care, hardwired. They care, they care about you, they care about what this disease process may be doing to them, and they just want to feel that care in return. And when they don't get it, they go right back into fight, flight and fright, saying things to you like where are are you going? Can I come with you? Are you going to leave me? They say things as dramatic as I want a divorce or I just want to die. They say these things because they don't want to feel like they're a burden on you, because they care. Now, the last part of the effective state of consciousness is called play. Now, play is not coloring books, it's not crossword puzzles that cognitively stimulate someone's brain in the hopes that they're going to get their abilities back. That's not play. Play is tapping in to the number one want that burns in all of us, and this want is more imperious than the need of food and sleep, and it is the desire to be important.
Speaker 3:We got to start putting our loved ones on the team. We got to start giving them small jobs to do, even if they're doing it wrong. Okay, like putting dirty dishes back in the cabinet. Who cares? Who's it bothering? Is it bothering you or is it bothering them? Promise you it ain't bothering them. Instead, when they go to bed, you take those dirty dishes out and you put it in the dishwasher. We need to start building castles, not digging graves. We need to build them up, not tear them down. We need to put them on a team. We need to get them a sense of purpose and some value and we need to make them feel important. Okay, that is the foundation.
Speaker 2:The sense of purpose is incredibly important and I had a caregiver tell me in a support group once okay, I give my husband the job of setting the table for dinner, but he doesn't do it right. I said what about it isn't right? Well, the fork could be on the wrong side, the spoon is upside down. I listened to the whole and then I said, okay, but does it really matter? And she thought about it for a while and she said, oh, I guess not. I said it is a purposeful activity. He's giving you his interpretation of how to set the table and it is far better that he be engaged in a purposeful activity than just sitting and watching TV. So other things that he can do fold the towels that are coming out of the dryer. They might not be folded the way you would do it, but so what? It doesn't matter, it's the act of doing. And often in our day center, if we sense that that person is really lacking that sense of purpose, they will come as a volunteer or they will come in as a teacher and they lead some activities, activities, or for some, they believe it really is their job. And we even have some that get a check at the end of the week and then we recycle it the next week. But that's all okay. And in fact I will tell you, we had a family the husband and the son and his wife who did not believe the husband and the son and his wife who did not believe that their mother would attend our day center. This is not for her. And I said okay, let's just meet there this afternoon. Let's just see what happens if we meet there. We met at the day center. As soon as she sat down, one of the other participants came over to her and said you know, we have Halloween in a few weeks and the preschool children will be coming through with their costumes and I really need help making their goodie bags. Would you come and help? She said, of course I will. She started attending within a week or so. She was attending full time. So the sense of purpose, you're absolutely right.
Speaker 2:Often we'll say we need your help. I had a young lady who came to our day center on public transportation and the driver came to the door and said she won't get off the bus and I said okay, give me a few minutes. So I went on to the bus and I said I'm so glad you're here because we are a reminder about which music to put up. She got right up and came into the day center. So there's a really funny story in that regard, if y'all could tolerate this one.
Speaker 2:But we had a gentleman who was a retired judge and his wife drove him to the day center and he would not get out of the car. Our program manager, very creative, came out and said judge, I need your help. Of course this is all untrue, let me preface. But she said it was a therapeutic fib, we call it. She said I was arrested last night and I just don't know how to handle it. He got out of the car and marched right in. So we want to know what did they do for a career, what was their level of authority, because we can tap into that and create that sense of purpose.
Speaker 2:A gentleman in one of our other day centers was constantly trying to leave it's what we call exit seeking and he was very physically fit. He could get far in a short amount of time. He was new to the day center too. We got more information from his family that he used to kind of manage an office, so they created a small office for him in part of the day center and they had things for him to do, to shred or to put in order. They had a certificate of appreciation above the desk with his name, cured the exit seeking. Every day he came in he went to see what jobs were waiting for him. That's really therapeutic.
Speaker 3:You know the folding of the clothes and this and that, yeah, you don't want to take away their independence, but the word interdependence means you and I together are going to accomplish a common goal, right? So I love the word interdependence. And you mentioned another term that I think everybody needs to hear. All right, and you taught me this a long time ago, Karen, because people have a very difficult time saying I don't like lying to my loved ones, right? They have been married for 60 years. They never lie to each other and they're like well, I'm not lying, I go, stop looking at it as lies, Lookiful.
Speaker 2:Daughter, I believe.
Speaker 2:I believe it's available on the internet. But there's a point in the film where the daughter finally gets it and she looks into the camera and says something like what difference does it make if she thinks it's May and it's really April? She got it and it doesn't matter. We have to enter their world, we have to go along and of course what we're talking about is loved ones who are really well into the middle stage of the disease. And this is where caregivers really start to feel that burden. And this is usually when our organization gets the phone call. The caregiver will say I need help, I'm at wit's end and they haven't had any direction or any guidance up until that point. So we definitely want to inspire caregivers that there are tools, Definitely want to inspire caregivers that there are tools, there are ways that they can decrease that burden that they're feeling and get that help along the way. It's a journey, for sure.
Speaker 3:It's a journey and therapeutic, fibrous. They definitely honor a higher truth and we got to remember that because we're constantly trying to keep them out of fight, flight and fright instinct, that fear, panic and rage. So let's go into that fear, panic and rage. And this is probably the last part of the segment. So let's talk about the triggers, because I really want to talk about triggers and what sets people off. Ok, I learned a long time ago that we, as caregivers and professionals, we need to start understanding their world and what triggers them into a bad behavior.
Speaker 3:Someone gave me an analogy that really helped me. It was called the donut analogy, okay, where the outer circle represents the environment. Right, is it too hot? Is it too cold? Is it dark? Are there reflections that they're seeing in windows that they actually think is a real person and they're getting scared? Is it too noisy? You know, I give an example of a noisy.
Speaker 3:I was in a memory care one time. I walked in to go do my music program and I did this for years and volunteer my time all over the place with my sing-along program because I'm a musician. I walked in and I saw a gentleman in the corner of the room in a fetal position and he was wearing a hat, a World War II hat, right. What was triggering him that no one understood was that they were watching TV and on that TV was a military show, all right, with a lot of guns and ammunitions and bangs going off. And this guy went right back to that trigger, right. And so that's part of the environment.
Speaker 3:Now, the inner circle is the person. What's going on with them that is causing it? Like you said, karen, they can't express how they're feeling. Are they sad? Why are they sad? They could be hungry, they could be thirsty, they could be in pain. They could be in pain, they could have a urinary tract infection, which, by the way, is 95% of the reason why most people are acting out in those behaviors is because there's a pain going on, and usually people automatically go to the first thing, which is a urinary tract infection, because they can't express how they're feeling, right, or they're uncomfortable about something Wearing shoes on different feet. That makes them uncomfortable, right? I give you another story and we're telling a lot of stories today, and this is good because this is how I relate to people.
Speaker 3:But there was a gentleman at one of your day centers up in Fort Pierce. Okay, I walked in one day to do my music program and there's a gentleman by the name of Bob. We all love Bob. Bob had such a sense of humor and, believe it or not, sense of humor is one of the last things to go. Ok, and Bob would walk up and he used a punch line on us all the time. He would walk up to me and he would say, hey, no booze, no babes, why bother? And he would shake my hand, right, and I would laugh. And because I laughed, it made him feel important. And then, 10 minutes later, bob came back to me and said hey, no booze, no bays, why bother? And I laughed the second time the same way. I laughed the first time, right. One day I walk in it was probably a month later and Bob is in there flipping over tables. He's punching people. I go to my friend Chris who was running the day center at the time. I said yo, what's going on with Bob? She's like we don't know. Please go take everybody, go do the sing along. We have to figure out what's going on with Bob.
Speaker 3:So they took Bob into the bathroom and Bob's daughter came in for a visit from out of town. All right, and what she did is she changed Bob's underwear. He used to wear tighty whities and instead she took away all of his tighty whities and she gave him boxer briefs. Now, if you knew Bob, bob would sit around and he would sit on his chair and he would scoot across the room and what Bob was doing is that he was scooting his underwear straight up his butt. He had a wedgie, so when they took him into the bathroom to try to figure out what was going on with Bob, they went oh, pulled it out. Next thing, you know, bob is good old Bob. Hey, no booze, no babes, why bother? He went back to being good old Bob.
Speaker 2:He couldn't say whatever I'm wearing is irritating me. That's the point. So I'm sure she had good intention. Obviously she might have thought you know, he's getting older, these are looser, they'll be more comfortable. But it had the exact opposite effect.
Speaker 3:It upset his world and we have to keep things steady, no matter how good we think a change would be, unless it's really something that's endangering them, that has to be changed we should leave it alone With that all said, and David, I'm sorry that Karen and I this was the Karen and Tino show today so let me ask you, david, okay, hearing all this, knowing that you have a diagnosis of Alzheimer's disease, all right, how does this make?
Speaker 1:you feel. Well, I have to tell you it's a lot of information and, according to what you're saying, everything makes total sense. The question in my mind is, as I'm hearing this now, will I hopefully be able to retain this as long as possible so I know what not only I can do for myself, but how I can help other people like myself? My goal is to not have these things happen and to do what I'm doing the exercise, the eating properly, so I can postpone or prevent these things from happening, that I won't be in the situations like you've described, and this is learning for me to realize. There's two sides of the story and future podcasts will talk, I think, more about what I'm going through and how I'm reacting in general situations, because I've felt some of these things you've spoke about, but I've realized it. But once you can't realize it anymore. That's when the caregiver is so important and that's what I totally appreciate.
Speaker 1:Everything you said, like I said, I hope I retain it and I'll probably talk to my wife, claire, about some of these things and she'll be on one of our podcasts talking about how she's caring for me in a way, but right now it's not much care, it's more of understanding. You know, instead of starting an argument, instead of you know saying something that irritates me, and I've told her the things that irritate me, which is good because I can do that. In your cases, these people can't tell you what they're doing. So if I can tell her now why she understands, and I'm talking to her about it, that's huge. So all these things you're saying to me are all things that are something that hopefully I never have, but will be something that I hopefully will retain and I'll be able to help other people as well.
Speaker 3:I love it, dave, and, honestly, the stuff that we said, like I said, it's common sense, and that acronym of CART that we were talking about before, it's not only good for dementia patients, it's good for everybody. All right, I don't like feeling corrected, I don't like arguing. I hate when people try to reason with me all the time or test me all the time. So that tool is very powerful. But I want to tell you this, david, and I got to know you for a very short time. I'm so impressed, I'm so glad that Karen introduced me to you, because I would love to have you on one of my support groups as well, because you, like many others, are dealing in the word and I love the way you're conquering this. But I'm going to get to that.
Speaker 3:This word is called fear. Ok, it's a powerful word and we could either let this word control us or we can control it to the best of our abilities. There's a lot of acronyms to fear that I've learned over the years. The first acronym stands for forget everything and run Okay, run away from your problems, run away from the bad situations. Run away from change Okay, away from the bad situations. Run away from change, okay, or it can mean this false evidence appearing real. That's more like it.
Speaker 3:Think about it. Think about the one thing that you're afraid of the most. Ask yourself a question Is it real, or is it a thought that you're putting in your head that's manifesting itself into something that's not the truth. What's the truth? Because the truth is fear is like a fire, and if you don't control the fire, it's going to burn you up and it's going to burn everybody around you up. Right, but this is what you're doing. That I admire about you. This is what I like to look at fear as Ready. Face everything and rise, and you're rising above it, david, and I can't tell you how many lives are going to be affected because of what you're going through and what you are going to bring to the world, and I believe that God is not done with you, david.
Speaker 1:One of the things I always say and I'll say it again is that the only thing in your life you have control over is how you let things affect you. That's it. Forget about anything else. And that's what I'm doing. I'm taking the bull by its horns and saying what do I got to do and Karen will attest to this I started doing it the day she told me, and that's what's made a difference up until now, and I continue to do that, and I wish everyone else would do the same things that we'll be talking about in these other podcasts.
Speaker 2:We can inspire everyone to do what you did to act at the earliest symptom, and we'll talk in another episode about why so many do not. We're trying to change that, because the earlier you know, the better you can grab that bull by the horns and the more options you have. And that's what you're doing, david. For those who are caring for a loved one that didn't have that opportunity, that's now in middle stage disease, that's another large population that we need to handhold and we need to help as well. So we'll keep going. We'll be hitting these different topics. We want everyone to keep listening, to also send us your story or your questions and we will provide the email addresses, even phone numbers, to engage and everybody get into this fight together. But again, so admire David for leading this and wanting to get the word out, and it's a very, very important message.
Speaker 3:Thank you both for having me today. I appreciate it. I enjoyed my time, karen, it's always good seeing you, my friend, absolutely.
Speaker 2:Thank you so much.
Speaker 3:You got it. Take care guys.
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.
