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 2 A.M. Ghost: What to Do When Dementia Brings Hallucinations and Fear
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
Your loved one wakes at 2 a.m. convinced there's a ghost in the corner. What do you do?
Dr. Erik and Karen Gilbert slow that moment down and give you a practical playbook for Alzheimer's hallucinations, delusions, agitation, and nighttime fear — without reaching for a pill first.
You'll learn why antipsychotics carry serious risks for older adults with dementia, how to think about Lewy body disease, and why a UTI or unmanaged pain can look like a sudden psychiatric episode.
Plus: the ABC behavior framework, simple environmental fixes like motion-activated lighting, and communication techniques that actually calm things down — starting with stop correcting and enter their world.
Whether you're in the early stages or deep in the caregiving trenches, this episode gives you tools you can use tonight.
Subscribe, share with a fellow caregiver, and tell us — what behavior are you trying to decode right now?
Welcome And Why This Matters
SPEAKER_01Hi, everybody. This is David from David's Alzheimer's site, along with Karen Gilbert, my co-host. Today we're honored to have Dr. Eric back on our program. He previously talked to the guide program, and now he's going to talk about some very interesting information and very important information about caregiving and medications. So with Karen, without further ado, Karen, would you please introduce him again?
SPEAKER_02We are thrilled to have Dr. Eric back, and the information you previously gave about the Medicare Guide program has been so critical for so many caregivers and thrilled to see the federal government do something to benefit the caregiver who experiences a lot of stress and burden caring for a loved one that has Alzheimer's or one of the many related disorders. And what we'd like to have you talk about today is behaviors that are often evident in a loved one with Alzheimer's or a related disorder and how caregivers can better respond to those. You know, we're often looking for medications, but you'll explain why medication might not be the best option and what we can do instead. So we're going to let you take it away.
SPEAKER_00Well, first of all, really, really honored and humbled to be on your podcast, David. It's incredible. The work that you're doing is just incredible as well. And Dr. Gilbert, the work that you and your team at Alzheimer's Community Care is doing with so many things, one of being the Adult Daycare Center, but you do so much more than just that. So uh big props and respect to the good work that you guys are
Hallucinations And The Medication Reflex
SPEAKER_00doing as well. And and thank you for having me on your show. Uh today we are gonna speak about a very important topic, which is behavioral and psychological symptoms of dementia, right? And in my world and Dr. Gilbert's world, we know it as BPSD, right? So some of your listeners who are listening, you know, they may have a loved one who has certain behavioral actions that they're taking. And the question that we have to ask ourselves, Dr. Gilbert and David, is well, what do we do? Let's say my grandmother, it's two o'clock in the morning, and she's looking up at a corner of her room, and she's calling my mom, who's her caregiver, and she says, I see a ghost. Look at that ghost. The first question is, what do we do in that situation? Right? I mean, Dr. Gilbert, what do you think typically and traditionally is done in that situation for my mom? My mom's there, she's looking, my grandma has dementia, severe dementia, right? What are some of the things that you think is going through my mom's mind?
SPEAKER_02Well, in many cases, caregivers are thinking, is there a medication for this? These hallucinations or or delusions, you know, often what we teach is put yourselves in their position in the room, see what they're seeing. They may not be hallucinating, they may be misinterpreting a shadow, maybe from uh a car's going by, their headlights shining in the room. So we we're always looking at not thinking there's a medication cure for this. We're looking at understanding what they see, what they hear, and trying to find the root cause.
SPEAKER_00And and you're so right about that, because unfortunately, our society today, everything is how can I fix it quickly? But the issue with that is that usually if you try to do things too quickly and not the regular way, there is side effects and problems when you try to do things. Oh, let me just get it done fast. One of the biggest issues that happens with medications, for example, antipsychotics like CeroQL, um, quietypine is the generic name for it, is that it actually has a black box warning. And a lot of people don't know that. Now, today, Dr. Gilbert and I are not giving medical advice. If your loved one is taking any medication, we're not telling you don't give it, stop it. You have to speak to your neurologist, to your primary care doctor, to your specialist, because each case is specific, it's different. But most of the time, speaking
Antipsychotics And Black Box Warnings
SPEAKER_00generally, something like Sarakoil, quiet epine, has a black box, black box warning. And the warning on it is should not be given in the elderly, especially those who have dementia. Why? And the answer is very simple. Because it increases mortality, it increases death. So am I not gonna use it? No. But am I gonna be is it not gonna be my first go-to action as a caregiver? Yes, I'm not gonna use it first. Why? As you correctly said, we have to evaluate are there secondary reasons for why my loved one has behavioral and psychological symptoms that are going on? Well, okay, here's the biggest question. My grandma never sees ghosts. All of a sudden now she's hallucinating, right? She's seeing things, she's not delusional where she has a false belief, but she's actually hallucinating where she's seeing or hearing something that doesn't exist here and now in our reality. So the first question I ask is, well, huh? Does she have a UTI? Does she have an infection? That's the first thing on my mind. Why? Because if she does have a UTI and I call my doctor and say she's hallucinating, and I just sprinkle some seroquil or antipsychotics on her, am I gonna take care of the UTI? No. In fact, I have that little fire that's burning, right, in the urinary bladder, in the urinary system, and I'm just giving it to I'm giving the body to calm down, don't hallucinate. But the fire is getting larger and larger and larger. The bacteria is growing. And that could be sepsis, that could be in the ICU. That's what actually happened to my grandmother who passed away. Um, so the first thing I do is, is it an infection? How do I know if it's a UTI? Well, does my grandmother have increased frequency? I used to change her diapers three times a day. Now I'm doing it eight times a day. Is she going just a little bit, a little bit, a little bit? So there's increased frequency, but there's not a lot of urine coming out. Is there a foul smell of the urine? Huh. It used to not smell that bad in my grandma's room, but now every time I'm trying to change her, I can I gotta put on a mask. Does the urine look darker than before? And so all of these things are going through my mind as a caregiver. Does my grandmother wince and go every time she's urinating?
SPEAKER_02Yeah, I I will say, and and again, we teach this as well. Often caregivers think if there's no fever, there's no infection. But you're so right in pointing out these other symptoms. An adult may not have fever until that urinary tract infection becomes so serious that now it is a hospitalization, perhaps an ICU stake, perhaps very serious and life-threatening sepsis. So, yes, we would always look at those basic needs also. You know, first we want to see, are they just misinterpreting? If their blinds are partially open and the wind is blowing a tree back and forth and they're yelling, who's out there? It doesn't necessarily mean they're hallucinating. They may just be misinterpreting what they see. But once we get past those basics, you're absolutely right. What else could be going on? And urinary tract infections are so common as we age.
SPEAKER_00And that's very that's a very good point. Because for for me, you know, as a physician and and and for yourself as a clinician, we look as clinicians at the full picture. I first want to know: is there something that's a real fire, or is you're right, it's not a real fire. For example, very often, and for the caregivers listening, we have our
UTI Red Flags Behind New Behaviors
SPEAKER_00blinds open, as Dr. Gilbert correctly said, in our loved ones, in our person's room. That blind has some street light that comes in. The street light, there's a coat rack in the corner. The coat rack now has a shadow because on the coat rack, there's actually a jacket and there's a hat. Now the hat and the jacket looks like the figure of a human being. So my grandmother is looking there and thinking, oh my god, that's a ghost in my room. But in reality, it's just a coat racket, right? With a coat and a hat. So those are the first things that you have to take a look at before you start medicating. Like Dr. Gilbert said, correct, is it something that's a physical thing? And we recommend for everyone to keep the blinds closed at night. But then someone will come and say, But Dr. Eric and Dr. Gilbert, if I close the blinds, there's no light. My mom's gonna go to the bathroom. Well, there's a solution for that. Very, very cheap on Amazon. You can have these lights that turn on with motion, and you could put them along the pathway to the bathroom. That as soon as grandma puts her feet down, what happens? The lights turn on only when she puts her feet down and she starts walking, right? And that's that's incredible. That's really incredible. Yes, David.
SPEAKER_01I have a question. What about dreams? That's another it's similar to what we're talking about, but dreams are probably even harder because they can be more erratic, they can be more unusual. How do you help them with that?
SPEAKER_00Yeah, dreams are very interesting. So the first thing you always want to figure out is what is the mind of the person living with dementia? What are they consuming during the day? So, for example, if 5 p.m., there's a movie that we always watch in the home, and grandma sits with us, and it's an action movie about a war in some kind of country, and there's right, there's shots being fired, people jumping, blood splashing, and my grandma, who has moderate or severe dementia, is sitting there and she's watching it with the family. What do you think is going to happen at night? That information that she processed is going to come to her in a dream. And she may start being scared in a dream. She may even start being delusional or have some hallucinations because of the content that she consumed. So a lot of the times the dreams are a reflection of what we saw in our reality. So it's very important from a sensory perspective to not overstimulate the person living with dementia with too much sensory things, especially violence and things of such nature. Dr. Gilbert, what do you think of that matter?
SPEAKER_02Things that they might think are going on right around them. They may think that the this uh conflict is outside their door. So, yes, we do look at those types of shows that would uh possibly instigate that kind of fear and anxiety. It's it's so much about often what we do that that can actually prompt these behaviors. Are we constantly correcting
Fixing Shadows With Simple Home Changes
SPEAKER_02the person? And that has a bearing on the family caregiver, whose first instinct is to correct, you know, if they still think they live somewhere else. Oh, but we've lived here for 10 years. That loved one can't process that. They're not in the here and now. Their long-term memory is taking over. And in the healthcare setting, uh, nurses and allied professionals are taught this concept of reality orientation. You're always telling them exactly what's correct right now. And that works well for the person who's temporarily confused because maybe they're very sick or very injured, they'll come around because they were cognitively intact before they were sick or injured. But those we care for with Alzheimer's or related disorder don't have that ability to come around. We have to enter their world.
SPEAKER_00Correct.
SPEAKER_02So we avoid correcting, we avoid arguing, we don't test them by saying, don't you remember, because they don't.
SPEAKER_00Yes.
SPEAKER_02And so often it's how we are behaving that can propel that challenging behavior, and then we look to medicated.
SPEAKER_00Right. And and speaking, speaking of speaking of medicated and speaking of dreams, uh, before the show we talked a little bit about things like Benadryl. So people say, well, you know, mom's not sleeping well. Let me give her a little bit of Benadryl. In fact, if you go to Rite Aid, all World Greens, you'll see a package. It's gonna say sleeping aid in big letters, and it'll be $7.99. And then on small letters, it's gonna say diphenhydramine, benadryl. So think about this. If you're giving someone Benadryl, which is going to really, really affect their cognitive uh function at that time that they take it, and they're going to sleep, they're gonna be confused, they're gonna have dreams, right? They're gonna have hallucinations. And so what Dr. Gilbert correctly said, and we see it together in the clinical world and the real world, is that it's it's an ABC type of situation when it comes to behavioral and psychological symptoms and dementia. What do I mean by A, B, C? The A is the antecedent. Ante means before. Before the behavior happened, there's usually a trigger. There's usually something that's triggering it. For example, the person living with dementia is not going to tell you that the home health aide who's coming into her room has scrubs on, and that scares her because she thinks she's
Dreams And Overstimulation From TV
SPEAKER_00in the hospital where she had a bad experience, so she doesn't think she's home. She thinks she's in the hospital. Why? Because the home health aide, not the nurse, but the caregiver, right, who's hired, has scrubs on. But the person living with dementia won't tell you that that's the A causing the B, which is a behavior leading to the C, which is the consequence of the behavior, which is someone acting out and yelling and screaming and being fearful, right? So there, or for example, they may not tell you that the room is too loud. That's the A. The room is too loud, and that's why they're having this behavior. They may not tell you that they're constipated. They may not tell you that they're in pain. They may not tell you that they're thirsty or hungry. That's the A. So what we have to do as caregivers, and Dr. Gilbert and I, as clinicians and other clinicians in the world, don't jump right away to when there's a B, when there's a behavior, giving a medication. Don't do that. All of us, right? First, we say, okay, there is a B, but what's the A?
SPEAKER_02What's the A? Well, something that we uh that we teach extensively with the nursing and allied health professionals that we teach is one of the most important questions you can ask yourself about the person you're assigned to care for is can they make their needs known? Everything you're saying, can they tell you it hurts when I urinate, or it hurts when I take a deep breath, or I'm hungry, I'm thirsty, my hip hurts. No, they can't. They're not able to make their needs known. And that automatically means that you, either as family caregiver or professional caregiver, needs to be that detective. What might they need? So we always look at the basics first. When were they last in a bathroom? When did they last have something to eat or drink? And we take care of those basics. If that still doesn't redirect the behavior, now we're looking even deeper. Could it be an emerging illness or infection? Could it be a medication side effect, something they're newly taking? But again, just as you said, giving them a drug for the behavior wouldn't fix any of that.
SPEAKER_00No.
SPEAKER_02Whatever that need is, is still going on.
SPEAKER_00Right. And it's it's really there's a lot of side effects. I always I used to teach medical students and I teach my nurse practitioners and my team members,
Benadryl Risks And The ABC Method
SPEAKER_00medications are not TikToks, right? They're not little TikToks that are harmless. They have side effects. And stuff like CeroQL, um, again, I'm not telling people not to take it, I'm saying discuss it with your doctor, but view the pros and the cons. So first ask yourself, like Dr. Gilbert said, did I look at all the antecedents? Did I look at all the possible causes before I give my mom who I love, or my dad, or my wife, or my husband, a medication that has a black box warning and says, will increase death in elderly who have dementia? I mean, if that doesn't tell you something when you're reading that, I mean, you know, so so it's worth going through and seeing, is my home too loud? Do I have a teenager who's you listening to rock and roll music too loud, right? Or hip hop or RB or anything, and it's so loud, and that's what's the A. Is it that there's some things that are visually scaring? Uh David and I, uh and I spoke at an incredible uh Alzheimer's community care uh conference that you guys held. I think it was your 27th? May 21st. But I think it was your 27th, right? It was our 27th conference, yes. And uh I had the uh uh the pleasure of speaking there, and David was there with me in the room, and there was a caregiver there. And the caregiver came up, he was asking me questions, everyone was there, and he said, You know, Dr. Eric, every Tuesday and Thursday, my wife, she has, you know, at night, she's all agitated and scared. And I don't know why. And I said, Well, let me ask you something, Mr. Smith. Um, what do you do on Tuesdays and Thursdays? And he said, Well, we watch a certain TV show. I said, What TV show do you watch? And then he mentioned something about like an army or Vietnam or some kind of series with a lot of fighting and stuff. And I said, Well, that's the reason why every Tuesday and Thursday. Now look at the flip side. If he would have said that to me and I would have said, Yeah, because it's easy for me, right? I would say it's probably the progression of her disease. And you don't know with these things. Sometimes it could be on Tuesday, something it could be on Thursday. Here's Seracol, 50 milligrams.
SPEAKER_01Oh one of the questions I have, which is which is important to me, is and also it's important what you're talking about, is when is this something to realize which you just mentioned that the progression is happening? There's it goes in stages. Alzheimer's
Staging Dementia With CDR And FAST
SPEAKER_01goes in stages, from my understanding. One of the things I fear myself is well, I know, and will my will Claire know, or how will somebody able to tell that maybe I need something else or nor assistance? Or how does that how does that relate to all this information you're saying? Because it all can relate back to the fact that they have progressed or they are progressing to a different stage. And there's no really way to know that or measure that, is there right?
SPEAKER_00Well, there is, there is. So there's a couple of ways. There's a scientific way, and then there's a non-scientific way. So the scientific way is here, for example, the guide model, what the new program with Medicare, we do something called the CDR, the clinical dementia rating scale. It's an objective test, validated test, screen validated test that actually stages the dementia. So someone could be mild, and then every six months to a year, we redo the CDR, and we know objectively, and it's about an hour, hour and a half test. It's not there's two types of tests. There's the fast, which Dr. Gilbert knows very well, and then there's the CDR. The fast is exactly what it is. It's very fast. It's an easy way to do it, it's not as accurate, it's this, okay, let's do it quick, let's stage you, boom, boom, bam, we're done. Then there's the like what I consider the real way, right? For me personally, because you know I like things to be super thorough. There's the CDR. So that's a scientific way of doing it. Every six months to 12 months, you stage someone and you see how they progress, right? And that should be done every six to twelve months, in my humble opinion, because it lets you know why is staging so important. David, as you know, you may be driving a car right now, and for you, it's This stage it may be okay. And nobody noticed in the non-scientific world that you're actually progressed. And nobody knew. And then all of a sudden your spatial, your decision maker got affected, and God forbid you're in an accident. But if you get staged every six months, you could act every 12 months, six to twelve months, you're able to see uh what changes you need to make in your life.
SPEAKER_01Does it also help to get the uh PET scans and so forth, those tests done at the same time or once a year, or does that make sense or does it matter?
SPEAKER_00Uh uh not really, to be honest. We haven't seen that, for example, in Alzheimer's disease that PET scans are used just staging someone. It's more the CDR that's used or the fast to stage someone. And staging is so important because if you're mild, it's maybe it's okay for you to have knives in your home. But if you're going to moderate to severe, maybe the knives shouldn't be open. Maybe the Draeno shouldn't be open on the bottom and not sealed. Right? Maybe the home the door should be protected now, as far as okay, how do I have a picture of a bookcase there? How do I have a door alarm? How do I have a wandering uh uh uh um the stuff that ACC does so well, the wandering bracelet or the watch that tells me if I left my geography of the home? That's different. So you bring up a great point. Staging is super important.
SPEAKER_02You know, there there are so many things a caregiver can look at. Of course, the environment itself. And then also what's in their diet. Is there something you're feeding them that that could be triggering some kind of gastric distress? Again, they can't tell you this upset my stomach or I have heartburn. They're going to act it out with behavior. And so when we get to the root cause, when we when we can identify a trigger, we can usually figure out how to avoid the trigger. And uh, you know, it's it's such a great aha moment with a caregiver. And I've had so many of these phone calls, and we've gone through this analysis, and they'll say, Oh, you know, I'm always correcting him, I'm always trying to bring him to the right information. Okay, stop doing that. Whatever his reality is, it's okay. Also, often they'll uh tell the the uh their loved one, you have
Enter Their World With Calmer Words
SPEAKER_02a medical appointment today's Monday, you have a medical appointment on Thursday at 9 a.m. Oh, that's upsetting information. Uh also, are you scheduling their appointments for the time of day when they are the least alert and frankly the least cooperative? You know, see what their rhythm is. If they are best in the afternoon, that's when you schedule the appointments. So it it again is that underlying theme of entering their world. And just as you said, and and we teach the nurses, there in healthcare, there's never a never and never an always. Are there some people who may be helped with that small dose? It might even be an antipsychotic, but the benefits were determined to outweigh the risks for that person. Correct. Yes, sometimes that happens. Uh, and I've seen people in that scenario and they and they were doing quite well. But it is important to understand the potential risks, particularly for a loved one with Lewy body disease. That risk of an antipsychotic is even greater in causing a severe or fatal stroke. So people really need a good diagnosis when they're determining medications, and you know, to understand all medications have side effects, all of them. They all have the potential to interact badly with others. And so um, so often, though, we we look for the trigger, that antecedent, that trigger, and then we can modify the environment, we can modify how we are communicating to that loved one or patient in a clinical setting, and we can avoid the need for medications altogether.
SPEAKER_00Yeah, and you're so right in our response as clinicians, as caregivers, right? Caregivers watching today, Dr. Gilbert said correctly, do not correct. Do not say, for example, no, there's no ghost there, or no, your mom's not alive. She's she's passed away, she's been dead. That is only gonna get their anxiety levels up. Because imagine, imagine someone telling you right now, the audience that's watching, someone's telling you, Dr. Eric, Dr. Gilbert, and David are not in front of you right now. What's gonna be a reaction? You're gonna say, What? They are in front of me. I'm watching them right now, right? And so you could tell, you could tell that you we shouldn't. Well, instead, we could say, if someone's upset, oh grandma, I can see that that this is upsetting you. Uh, you seem scared. Uh, I'm here with you. Let's slow down for a second, okay? Oh, uh, yeah, I do see that coat rack. I do see that ghost of it. One second, and don't you come out and don't you come back in. That's it, grandma. He's gone. He's never gonna come back again. And you didn't just say, Oh, he's gone. You actually took the coat rack. Because if the cold rack is still there, you saying quote unquote, he's gone, if the antecedent is still there, and you telling them, oh, it's not there anymore, it's not gonna work, right? So it's truly looking for that antecedent.
SPEAKER_02Yeah, it's it's going where entering their world and understanding that uh you've got to step into how they see the world and and go along with it, and it's okay. We call those therapeutic fibs. And if you're ever uh at a loss for what to say, sitting down next to them at eye level, saying, just as you said, I hear you, tell me more. Sometimes they just need to get it out, yes, and then they can move on.
Resources, Support, And Closing Thoughts
SPEAKER_02So, you know, we we do want to wrap up with telling people where they can see this complete narrative that you prepared, which is outstanding. So, my understanding is if they go to an internet search, if they go to Google, the Dementia Times, Dr. Eric, E-R-I-K, you will get to these links and get to this information. Uh, frankly, I have prepared it to share with all of our staff. Again, it is what we teach, but I always like to present information coming from another expert, which gives it even more validity. Um, and um. And uh I think care just gets better, whether it be in the home, in the hospital, in the physician's office, in a rehab setting, in an assisted living, in a skilled nursing facility, when all caring for the person understand these concepts.
SPEAKER_01One of the things I want to end up with is this uh I do have a website, David's Alzheimer's Fight.org. And there's two very important things I want to bring out about that. Number one, I have a peer-to-peer group meeting every third, every the last Monday of every month, that I'm trying to reach out with people with mild cognitive impairment so we can discuss our issues. I don't know if anybody else is doing this. I think it's uh it's been absolutely fabulous to talk to each other, you know, and to tell about our experiences and help each other. And the other thing is I do and still willing and trying to do my speeches, my my the the about why you want to know, do you want to know? And that's what I talked about at our at the conference this year, is it's very important to find out early. As we've all said, everybody in this business, everybody that knows anything about Alzheimer's knows the earlier you find out, the better off you have in trying to at least subside or reduce the symptoms. So that's critical. So that's all on my website. They can sign up. I also encourage people that want to be on the website, anybody that thinks their doctor or their nurse practitioner or whoever would like to add their opinions about what can be done like we do today. That was I also have a place on the website, they can sign up and we can schedule them for a podcast. So with that in mind, thank you, Dr. Eric. Thank you, Karen. Thank you so much for joining us today. And I hope you tell people about the podcast and get the word out that we are people that can help you.
SPEAKER_00Thank you so much, David, for everything you're doing, and Doctor Gilbert, thank you for everything you're doing.
