Epilepsy in Nursing Homes: The Need for Education

Andrew N. Wilner, MD; Ilo E. Leppik, MD


March 01, 2023

This transcript has been edited for clarity.

Andrew N. Wilner, MD: Welcome to Medscape. I'm Dr Andrew Wilner, reporting virtually from the American Epilepsy Society meeting.

Today, I have the pleasure of speaking with Dr Ilo Leppik, professor of neurology at the University of Minnesota in Minneapolis, Minnesota. Dr Leppik had a very interesting abstract at the meeting, and he's going to tell us about it.

Welcome, Dr Leppik.

Ilo E. Leppik, MD: Thank you, Andy. It's good to see you again after all these years and thank you for showing an interest. I've been very active in working in this area of epilepsy in older adults — they're not elderly anymore. My major concern is that there just doesn't seem to be much interest among neurologists and epileptologists in what I consider to be a major problem, but there is a great need.

Wilner: Just to set the stage, tell us what population you studied and why you studied it.

Leppik: We became interested in nursing-home epilepsy because we noticed that in our neighborhood, our pharmacists were reporting a large amount of antiseizure medication use. Some years ago, we got a CDC grant that allowed us to download data from over 9 million people in all US nursing homes for a 5-year period.

This database was monstrous, and luckily, we had some really good computing power at the University of Minnesota. This database contained all the International Classifications of Disease, Ninth Revision codes, so we were able to look at the actual prevalence and incidence of epilepsy by comorbidity. We published one of these papers a while ago in Neurology.

Of all nursing home residents, 7.7% had a diagnosis of epilepsy. We suspect that these are probably mostly convulsive seizures because in talking to medical directors when I go to their meetings, they're unaware of the focal seizures that probably happen often. We also had the ability to look at falls, fractures, and other information.

We just published in the Journal of the American Medical Directors Association the incidence — that is, new cases — of epilepsy. We did this by taking anybody who'd been in a nursing home for 3 years in our 5-year data set who didn't have epilepsy to begin with and then developed epilepsy sometime during the 3-year course.

We found that the incidence was 16 per 1000 per year, which is much higher than has been reported in the outpatient older adult population. The issue is that epilepsy is very common in nursing homes. That triggered the issue of what are nursing home doctors doing about it? What's their level of knowledge? What's the level of care in the nursing homes?

About 2 years ago, just about the time COVID-19 hit, we developed a questionnaire that we were able to administer over the internet. Our hypothesis was that rural vs urban [areas] differ in practices, and the second was just to gather information. Bottom line, the results were that we ended up with 69% urban and 31% rural, which is enough that we could perform statistical analyses.

We limited the responders to medical directors of nursing homes. We initially thought that maybe we could include nurses, but we thought that we'd get most of the information there. I think a major finding, which sort of shocked us, was that only 52% of nursing homes actually had a protocol to deal with seizures.

Wilner: This was in, I think, 91 nursing homes. Are they all in Minnesota or all over the country?

Leppik: No, these were 91 medical directors who responded. I think the one thing that disappointed us was the low rate of response, and we suspect people are just too busy with taking care of their own COVID-19 issues.

This is nationwide, and we do have a breakdown. I have a map with the United States, which we didn't show at the meeting. States like California, Texas, and New York had the most responders. Some of the rural states had maybe one or two responders. It was pretty much nationwide.

Wilner: If they don't have a protocol, that means the nurse sees the patient have a seizure, calls the doctor, and then the doctor would take action. That's what I am envisioning. Is that right?

Leppik: If they have a protocol, it's not so bad. Half the time, they just start scrambling, and it is a pretty scary thing to them. I think one thing we learned by talking to them at meetings plus doing the survey was that most of the time, they're not prepared to deal with epilepsy or seizures happening.

Wilner: Even though 10% of the residents, approximately, have seizures, right? It's close to 1 in 10, right, in the nursing home?

Leppik: Yes. The problem is, when you boil it down, we also had data on how many people you have in a nursing home. Most of the nursing homes had maybe 200 people in them. If you do the 7%, you're still not counting many people.

There is a large amount of missing information. How often do people have seizures in nursing homes? We don't know that. Even though 7% have a diagnosis of epilepsy, maybe they'll go a year or 2 without a seizure even though they've had a previous seizure. We need to do more studies investigating the probability of having more than one seizure.

The other problem is that, unlike people in the outpatient setting, we did have a relatively large falloff in patients in the study. At the end of 3 years, we had maybe only half the people that we started out with, and most of those were people who were deceased. Number one, there are many patients who do have epilepsy, but we don't know what the frequency of seizure is there, and we don't know how upsetting it is.

The other thing that we found very fascinating was when we asked how often patients or guardians of the patients want to transfer to a hospital. It was amazing. After a single seizure, 66% of family members or guardians wished to take them to the emergency room. The doctors really didn't want to send them to the emergency room, so there's a little bit of an issue there.

We found that an actual transfer to a hospital only occurred in 7.7% of people who had a known neurologic disorder known to predispose them to seizure. If somebody had a stroke and they had a seizure, most of the time, more in rural than in urban areas, they would just keep them in the nursing home.

In urban areas, the doctors I talked to said, "If we don't send them to the emergency room, we may get sued." That plays a big role. There's a real concern among the nursing home physicians about being sued.

I take care of pediatrics and adults. I have a saying that in pediatrics, it's the adults — parents of children — that give you a hard time. In the older adults, it's the adult children of parents that give you a hard time.

Wilner: Suppose I'm a medical director of a nursing home, and I happened across your study. I say, "Gee, this guy Leppik says I ought to have a protocol, and I don't have one. Maybe I should get one. Where do I get one?"

How do we fix this problem?

Leppik: The idea of the study was to find out what the need was. One thing we found in the survey was a very large number of nursing home directors would love to have educational programs. Our hope is that, based on the information we have, we will develop some kind of educational program for nursing home directors.

Almost all the directors I've talked to outside of the survey would be absolutely thrilled if somebody would come by and develop some kind of educational programs that they could use. The other thing we found is that most nursing homes don't really have educational programs for their nurses.

There's a high rate of turnover of nurses and caregivers, so there's a huge need. We think that an educational program developed in conjunction with perhaps the American Epilepsy Society and nursing homes would be of great benefit.

Wilner: Dr Leppik, this has been a great discussion. I want to thank you for sharing your research with Medscape. Before we close, is there anything you'd like to add?

Leppik: There was another thing that surprised me. I thought that, after a seizure, antiseizure medications would be started. We found that, more than half the time in a patient with Alzheimer's disease with a first seizure, nursing home directors did not start an antiseizure medication.

I think they were quite aware of the fact that, sometimes in people who have Alzheimer's, the antiseizure medications may cause more problems with cognition and behavior than is worth treating an occasional seizure. In roughly 30% of those without Alzheimer's disease, they would not start any seizure medication, which I thought was very interesting.

Wilner: That is interesting. Each case has to be individualized treatment or no treatment and which drug. You're a world expert on that. Maybe we'll learn more about that at next year's American Epilepsy Society meeting.

Leppik: My biggest concern is we just don't have much interest in the older adults in the American Epilepsy Society. The International League Against Epilepsy has just recently set up a commission, but we're all getting older. There's no question that one third of new epilepsy cases will happen in people over age 65 years.

Wilner: Dr Leppik, thank you very much for sharing your research results with Medscape.

Leppik: Thank you, Andy. This has been very helpful.

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