When “Dementia Behaviors” Are Actually Silent Seizures

Could behavior that looks like dementia have another explanation? Silent seizures can be difficult to recognize, especially when changes in awareness or behavior are mistaken for symptoms associated with dementia. Understanding the possible connection between seizures and dementia-like behaviors may help families, caregivers, and long-term care professionals ask more informed questions about a resident’s condition. In this week’s episode, nursing home abuse lawyer Rob Schenk welcomes Russ Barker to explore when apparent “dementia behaviors” may actually be silent seizures.

Intro

Schenk:

When a resident suddenly becomes confused, agitated, or falls, dementia often gets the blame. But what if dementia isn’t the culprit? I’m attorney Rob Schenk. This is the Justice for Residents podcast, and this week I’m talking to Russ Barker, a former nursing home administrator and researcher who believes that silent seizures are being overlooked in dementia care.

We’re discussing the signs, documentation clues, and what facilities may be missing. Stick around.

Okay, so that was like a Riverdance jingle. I dig that one. That was a good one. Today we’re talking with Russ Barker about silent seizures and the issue with assessment of those with residents that have dementia. But if you want to learn more, I would recommend that you go back to episode 72, way back to episode 72.

That was in June of 2018, and that was Caring for Nursing Home Residents with Dementia, and our guest was Kate Swaffer. Wow, that was… Man, it’s almost been 10 years. So if you wanna learn more about dementia care and long-term care, check out that episode. Also, we had an episode more recently back in April of 2025, that’s episode 296, and that was Assessing Pain in Non-Verbal Dementia Residents, and that was with Dennis Collins.

Listeners can revisit our earlier conversations on caring for nursing home residents with dementia and assessing pain in nonverbal dementia patients.

Guest Intro

Schenk:

So a couple of good episodes to check out if you wanna learn more about care of residents with dementia. We had a great conversation with Russ today. So without further ado, we’ll go ahead and get into the meat and potatoes. Russ Barker is the founder of Segal Health and a former nursing home administrator focused on improving dementia care.

Through his doctoral research, Russ has explored the role of silent seizures in people living with dementia, and developed the Dementia Seizure Spectrum Framework to help identify these often overlooked neurological events. His work combines frontline care experience with clinical research to improve recognition, treatment, and outcomes for vulnerable residents, and we are very happy to be talking with him today.

What Do Silent Seizures Look Like in Dementia Residents?

Schenk:

Russ, let’s start with the basics. What is a silent seizure, and what does a silent seizure more or less look like in a dementia patient?

Barker:

That’s the thing. A silent seizure may not look like anything. A silent seizure, especially in a dementia patient, can look like normal behavior, a normal dementia-type behavior.

And that’s the issue with why this is such a missed part of dementia care. And to give a frame of reference, if I can give you a story just to bring it to identifying a typical resident, maybe a caregiver situation, another nurse. So if in the morning a caregiver goes in to get the resident up, get them ready for breakfast, get them dressed, the caregiver notices that the resident is just not really alert.

They’re not really responding, not responding to direction, not their usual self. And the caregiver tries to keep helping them with getting dressed. Eventually that happens. They get them out to breakfast. The resident’s really not eating. It takes them a while to get going, and they’re just having one of those days where it would get documented as, “Betty’s just not feeling well today, just having a bad day.”

But what we don’t know is what’s actually happening, and that very well could be a seizure effect. And especially with most of these seizures, and I’ll get into some data a little bit later, but most likely those seizures happen at night. And especially the silent seizures. Over 90% of them happen at night, so we’re not gonna see them.

So those behaviors really get attributed to, like I said, maybe the dementia’s progressing, or that’s just Ralph and what he does. His picking at clothes, his just general uneasy behavior. What we’re missing is that silent aspect of it.

And so it’s not the convulsive clinical seizure that we typically think of, and that’s what I thought of. And as an administrator, I knew to stay out of the way. I’m not a nurse, but I had my role if a seizure happened. But there is this whole other segment of the dementia care population that has these silent seizures.

And they come in four forms, and this is what I’ve classified as I pursued my doctorate. I framed them in four different ways. There’s the seizure event, which is what we think of, a clinical seizure, convulsive seizure. There can be a movement seizure. There’s a term that I had to learn, ’cause again, I did not know this until it happened to my mother, called a myoclonic episode, myoclonus.

So just a startled jumping action. Awareness is another category. So you may get a response of, again, zoning out, the “When did you come into the room? I didn’t know you were here.” And just like this kind of reawakening of, they were off, and then they’re back, and then, “Oh, I didn’t know.

When did you get here?” This time lapse. And the other one is behavioral, and that gets into what can be misattributed to sundowning. The abrupt aggressive behavior, the mood changes right away. So there really can be those four categories, and there’s different variations within those.

But that’s what we’re looking for. The struggle is that they look very much like normal dementia behavior. And the art in this is there is no clinically validated tool for risk assessment in the dementia population for seizure risk. Just as we have one for fall risk, we do fall scoring, we do mini-mental exams, we do swallowing studies, we do all kinds of assessments.

There is no clinically validated tool that I’m aware of, and I’ve asked quite a bit, to assess for seizure risk. But there are some key factors that can come into play, and that’s where you start to put those together, based on that assessment and the behavior you’re seeing. Maybe it’s something we need to look at and refer to the neurologist for consultation.

That’s the piece that’s getting missed. So it’s tough, and that’s where the training comes in. That’s where the documentation comes in. That’s why it’s so important.

Families and caregivers can learn more about the link between seizures and dementia.

What Documentation Clues Suggest Possible Seizure Activity?

Schenk:

So with respect to documentation, what would be some of the documentation, at least in your research, that would essentially be a red flag or be an indicator of a silent seizure?

Barker:

What I look for are patterns. Whether it’s the documentation in the nurse’s note, any type of charting, an incident report, I look for unobserved falls, falls without a reason. If you start to see patterns with those, and again, you start to look at other aspects of that resident’s care, that’s where you start to investigate further.

Unexplained falls also raise the question of whether Georgia nursing homes have to prevent all falls.

And you don’t try to diagnose, but you at least flag those for referral to a neurologist. But really it’s the pattern of, is it the same time of day where we start to see these behaviors? Is it every morning when this resident gets up? Is it three or four times a week?

This clustering of symptoms. But what the charting’s gonna show is just vague phraseology of, “Mary didn’t participate in bingo this afternoon because of whatever.” The key is when we look at those patterns, what I wanna see, to flip the script, is what was the environment like? What was going on before? Are there triggers? What was the situation? What happened, and for how long? And then how was the resident after? Was the resident confused? Was the resident tired? ‘Cause that’s usually the clue that you look for, because seizures, especially with somebody who’s frail, more advanced in their level of dementia, even though they’re silent, they still take a lot out of a person. It’s basically the brain firing and completely not being able to stabilize.

So there’s this after effect. You start to see documentation of an event, and then maybe that evening they’re just very tired. They don’t wanna come out of their room. They’re gonna eat in their room. There’s confusion. But you’ve gotta be able to start collecting the data points to put those things together.

And again, that’s where the incident reports come in as well. It’s not just one isolated event. It’s putting those factors all together to tell the story.

What Led You to Research Silent Seizures in Dementia Care?

Schenk:

You had talked to me before we started the show about how you came into this space.

Would you mind telling us a little bit about your story and what led you to the research that you’re working on right now?

Barker:

Sure. I’ll try to keep it short. So yeah, I was a nursing home administrator, a recovering nursing home administrator, as they say. And I went right into being an administrator right out of grad school.

And did that for 25 years, different levels of care, different sizes of facilities, CCRCs, independent, skilled, memory care. What we called memory care back then, it was Alzheimer’s units. So I did that for 25 years, and I left and did some other things in other industries.

But in that time, I’m an only child, and my parents were local in Kansas City, but my mom developed Alzheimer’s. So I said, “All right. I’m ready for that.” And I was talking to Dad, and this was right around COVID, when it became very apparent that she needed to… And I had some help come in to the home, but my dad decided to move her to memory care right about towards the middle of COVID.

And that was tough, but a couple moves later, she was in a community that was closer to me and where he could be upstairs in an apartment. But she started developing myoclonic episodes, but I did not know what they were. I’d be at breakfast with her, and she’d start to just jerk.

And, “Mom, what happened? What scared you?” It was nothing really. And I brushed it off. But it kept happening, and so I started to ask questions. I didn’t really get any answers in the community. So of course, I played Dr. Google and I researched. “What is this?”

I didn’t even know how to search for it. But I came up with myoclonus. And so I read about that, and then one thing led to another. We brought her back home. I was a caregiver. I took the night shift. One morning she had a full seizure when I was getting her up, completely out of the blue. And after that she developed more seizures.

The point of that is I was not prepared. I was prepared for all kinds of things about Alzheimer’s. Trying to leave, talking through the night, all kinds of things. I was not prepared for seizures to be on my radar screen. And through that process, I became fascinated with the neuroscience behind why this is happening, and that led me to go back to school and pursue a doctorate.

Initially, it wasn’t really drilled down to seizures, because at that time it was just more the neuroscience behind Alzheimer’s. But as her seizures became more prevalent, I really drilled down to realizing that there’s nothing out there for administrators. I’ve talked at a few conferences, and every time I’ve asked who’s been to a seminar on seizures and dementia, nobody raises their hand.

I’ve talked to medical director groups, it’s not talked about. I’ve talked to MD PhDs whose whole career is in epilepsy and Alzheimer’s, and they find the same struggle. I don’t know why it’s not being talked about. So it became this kind of passion of, okay, this happened to me, and I’ve just stumbled on this whole thing of, this is a big deal.

And so my dissertation is on seizure risk assessment. I’m trying to create a framework by which at least the model is out there for communities to use, because there is no clinically validated tool to do an assessment. And so it is very personal to me because I’ve lived through it. And like I said, I have the administrator hat, and I have a caregiver hat, and I have a researcher hat.

And all three of those play into what I’m working on. And so when I look at the research, I put myself into the role of, oh man, I can think of this resident that happens to. I have this lens now, so if I am visiting a community for whatever reason, I see everything through that lens.

I see it a completely different way. And it’s like, how many of these did I miss? ‘Cause my mom had unwitnessed falls. My mom was found on the floor. The staff would go in, and she’s on the floor next to the bed. In her case, most likely those were seizure-related and weren’t identified.

So on the facility side, that’s census, that’s family satisfaction, that’s confidence, that’s deficiencies, obviously. It just takes one fall and a broken hip for my license as the administrator to be in jeopardy. So all those things come into play. But no matter what country I’ve talked to, I see the same issue.

When falls and deficiencies raise concerns, families may also want to know who investigates a nursing home abuse case.

Dementia’s not just the US, it’s worldwide. And the research is there. It’s certainly in the literature. It’s just thin, but the connection has been established for decades. It’s just we haven’t put the pieces together.

Clinicians have also written about the dual challenge of epilepsy and dementia in older adults.

Question of the Week

Schenk:

All right, so we interrupt this conversation to bring you the Nursing Home Regulation Question of the Week.

This week, the difficulty level is medium-hard, and if you get this right, you get to be yourself when it comes to whatever you find comfortable, no matter what the situation is. So for example, I used to have a boss that would bring his own coffee beans and roast them in the office, and he would get mad if I used the Kroger Irish creamer, like the cheap stuff.

He’s like, “This ruins what I’m trying to accomplish here.” But that’s what I want. It’s my comfort thing. It could be you’re at an office party or whatever, maybe a Thanksgiving office party, I should say, and you wanna wear your ugly sweater.

The one that you’ve had for 30 years. You can do that even though everybody else is in suits, if you get this question right.

Under 42 CFR 483.20(h), which of the following must conduct or coordinate the resident’s comprehensive assessment? Is it A, the attending physician, B, the registered nurse, or C, the director of nursing?

And that answer is B. Under the federal regulations, the nursing home’s comprehensive assessment must be coordinated or conducted by a registered nurse.

What Is the Dementia Seizure Spectrum Framework?

Schenk:

Tell me more about the Dementia Seizure Spectrum Framework. I know that you’re still working on everything, but is there anything that you can tell us about where you’re headed with that?

Barker:

That’s actually the backbone by which everything is built. Everything is driven from that.

What I’m working on now… I wasn’t really planning on talking about this, but you asked, and this is one of my babies. I’m taking the CMS public record, what we can get through CMS, and I’m filtering it through the Dementia Seizure Spectrum.

So it’s dependent on the deficiencies. I’ve identified certain F-tags. I’ve identified certain staffing patterns. I’ve identified certain size and ownership characteristics, everything that’s public record that you can get. And if I filter it through the DSS, which is again, the seizure events, the behavior, the awareness, and the motor or the movement, I can map those through and then identify patterns by which certain deficiencies…

Staffing patterns and ownership characteristics can also help explain why nursing home abuse occurs.

If I know this deficiency’s marked, that’s most likely an awareness issue. I can map that to a dimension three or a domain three. And if I do that, then the question is, what’s next? That becomes my next piece, which is what I call seizure-safe protocols. So if we have identified the type…

I’m kinda naming the type of seizures, and that’s my goal. I’m trying to get naming out there where it’s not just, “Oh, she was in a fog. She was just acting weird,” or whatever. It’s like, is it one, two, three, or four? And based on that, then we go to the protocol, which is recognize.

We gotta recognize, that’s part of the training. We gotta recognize what it is, how to respond based on that, how to document it, and then how to advocate for it. And so all those come into play. And if we close that loop, then I fully believe, I don’t have a license anymore, but I fully believe that falls will go down.

I can’t get answers to… And I know administrators are so protective. What I’ll do is I’ll say, “Just think of all the awareness falls you had in the last month in your incident reports, whatever that number is.” Let’s say it’s 10. What if I could say three of those I could eliminate next time you run a report?

But nobody will give me a number, because nobody wants to say a number out loud. But the thing that really hits home is, the way to think of it is every resident that has a documented seizure disorder, so there are some residents that have epilepsy in their chart, and that’s it, and it’s very evident.

They may have seizures, but those are the ones we can see. For every one of those, there are four or five others we don’t see.

Schenk:

Wow.

Barker:

So that’s how you think of the numbers. The prevalence that’s out there in the literature is about 8% of the Alzheimer’s population. But those are the clinical convulsive, what we see, type seizures.

So let’s say 8%. There’s a whole other population that’s out there. Without going into the weeds on the math, that’s where I get that for every one of those, there’s four or five others that we miss, that we don’t see. And those are the ones where every time that happens, cognitive decline accelerates, because…

Researchers continue to study how often seizures occur in people living with dementia.

Just think of yourself when you have a bad night’s sleep. We’re so focused on sleep hygiene for us, the Oura Rings, the Apple Watches, we put the blinders on, or we make it cold, all these things to protect our sleep. We don’t do that in communities.

We don’t do that in nursing homes. We do the two-hour bed checks. We have alarms. We have all these things. And if 90% of those silent seizures are happening in the night and we’re not seeing them, and those residents wake up… Think of how you wake up when you have two or three hours of sleep and you’re struggling.

And okay, now I’ve got the staff coming in to do stuff to me, and I’m not feeling it, and I’m not recovered yet, because every seizure requires a recovery period. And that’s why I say a lot of that sundowning may not be sundowning. It may be seizure recovery, and I’m still trying to recover, and it’s the afternoon, and everything’s happening around me.

We got visitors, we got dinner, we’ve got activities. It’s so noisy. The light changes. And I need my space, but you’re in my face, and that’s where the behaviors come in. And then that gets documented, and that’s where we have antipsychotics. That’s typically where we see, okay, now we need to intervene with a medication.

Those medications actually lower the seizure threshold. A lot of antipsychotics will lower that seizure threshold, so we’re just creating this cycle where we’re not addressing the root cause of what’s happening. And some of your guests talk about falls and talk about the FAST assessment or approach to stroke recovery. We don’t have that for seizures.

We need that for seizures. So that’s what I’m trying to do.

Clinical studies have also examined epilepsy and seizures in patients with dementia.

What Should Facilities Train Staff to Recognize?

Schenk:

In the last couple minutes, explain to me any ideas about how skilled nursing facilities can train their staff to recognize this. I understand some things might be easy, some things might be hard. I think this is more towards the hard, ’cause you’ve described that you have to look almost holistically at each resident.

So how do you anticipate that staff can be trained on this?

Barker:

Yeah, I think it’s just a matter of… And I’m very sensitive to that because, like I said, as the administrator, I don’t want another clipboard to fill out. I don’t want another screen, another checklist to fill out.

I don’t want any time added to what my nursing staff and dietary staff and housekeeping staff have to do. But it really is just a matter of awareness of describing what you’re seeing. You don’t have to worry about diagnosing, just describing. Even if that’s the only change, even if you just identify those particular residents that may have more unwitnessed falls than another, maybe there’s two or three.

Every role in the building plays a part, which is why it helps to understand the types of nursing home staff.

Focus on those two or three and just kinda do a trial. And for those two or three residents, make sure the staff know to be more descriptive in their charting. What do you see? What was the environment? And what happened after? If you do before, during, and after, and that gets followed up on and reported, just on those two residents, see what happens.

Start there. Because there’s no new fancy training tool, training mechanism. It’s just an awareness of, okay, Mary’s mom had Alzheimer’s. Every resident has an assessment, they have a care plan. We’re able to see the history.

Her mom had Alzheimer’s. She has a traumatic brain injury. She has these medications. Those things start to stack against somebody. So if I see lip smacking, if I see repeating of words, my mom used to say “man can,” which I now know was a seizure, all the time. I did not recognize it.

Those types of patterns would make the total difference in the world, and then you think of it through a different lens, of how you approach this resident and then get an intervention. The seizure medication that she started on was after a full seizure. If you can start identifying those things early and get on, one of the common ones is Keppra.

There is literature out there that shows if you get on Keppra a little bit early and start to identify, yeah, I start to see these, that can slow cognitive decline some, because you’re calming the brain, the hyperexcitability. The other point I’ll make is early onset. If there’s any early onset Alzheimer’s residents in anybody’s building, those residents have 80, 90% higher risk of having a seizure.

So it’s pretty much a given that they’re having seizures, and typically those are the ones that are younger, 40s, 50s, so they get that aggressive behavior label, and that’s where the medication comes in just to calm things down. But it really isn’t solving the issue.

It’s actually making it worse.

Some researchers have noted that epilepsy may go unrecognized in early Alzheimer’s, and listeners can hear more about understanding dementia care in nursing homes.

Schenk:

Russ, we really appreciate you coming on the show, sharing your story, and sharing your knowledge with us today.

Barker:

Thank you for the opportunity, and it’s just one step at a time. Just trying to get some education out there, and feel free to contact me with any questions.

I’d be more than happy to help.

Schenk:

Folks, I hope that you found this episode informative. And if you have an idea for someone that you would like for me to talk to, let me know. If you have an idea for something that you would like for me to talk about, let me know that as well. If this goes according to plan, this episode should be published, I believe, October 26th of 2026.

So almost getting into Halloween. So I hope that you have a happy and safe Halloween, and we will see you next time.

Thanks for tuning in to the Justice for Residents podcast. Nothing said on this podcast, either by the host or the guest, should be construed as legal or medical advice, nor is intended to create an attorney-client relationship between the listener and either the host or any guest. New episodes are published every Monday and are available on all your favorite podcast apps, as well as on YouTube and our website, justiceforresidents.com.

Again, that’s justiceforresidents.com. The Justice for Residents podcast is hosted by Rob Schenk, a trial lawyer representing victims of nursing home abuse and neglect throughout the state of Georgia. We’ll see you next Monday.