Epilepsy and seizures are more common in the nursing home than in any other population. In fact, epilepsy is the third-most common neurological disorder affecting older adults. “Seizures often cause panic,” says Ilo Leppik, MD, FANN, professor of pharmacy and neurology and director of the Epilepsy Research and Education Program at the University of Minnesota.

“Because they can be scary and staff are unsure how to handle them, they often send patients out to the emergency room [ER].”

It is time to take the mystery out of epilepsy by developing and promoting protocols and a streamlined approach to treating this condition, he says, especially new-onset seizures.

The good news, Leppik says, is that there seems to be a growing interest in the issue. He is currently working on a survey/study to gain insights into how facilities approach managing a first seizure in nursing home residents. In the meantime, much clinical knowledge and evidence are available to help ensure the best possible care for people who have epilepsy or experience a seizure.

Why Epilepsy? Why Now?

According to the Centers for Disease Control and Prevention (CDC), about 3 million adults in the United States aged 18 or older have active epilepsy, and about a million of these are 55 or older. The growing incidence of epilepsy in the elderly is linked to the increased prevalence of stroke, dementia, and brain tumors. The Cardiovascular Health Study confirmed that patients with a history of stroke have a higher risk of developing epilepsy.

“The number of people who develop epilepsy in the nursing home is about 12 times higher than in the community at large, and about 1.6 percent of residents develop epilepsy every year,” Leppik says. Individuals age 60 and older also are about twice as likely to develop a first unprovoked seizure than younger people, and they are more likely to have subsequent seizures in the first year after the initial event.

Sometimes Secretive Nature of Seizures

People often think of seizures as involving convulsions. However, in fact, seizures can be much more subtle, particularly in older people. For instance, they may exhibit brief episodes of memory problems, confusion, falls, or dizziness. A resident may stare into space; wander; be unable talk, answer questions, or respond to instructions; or exhibit a chewing motion with the mouth. These may last a few minutes or hours. If staff aren’t trained to recognize these behaviors as signs of a seizure, a patient’s epilepsy may go undiagnosed and untreated.

There are three main categories of seizures: generalized-onset, focal-onset, and unknown-onset. Generalized-onset seizures affect both sides of the brain, or neurons on both sides simultaneously. For these types of seizures, symptoms may include sustained rhythmical jerking movements, muscles becoming limp or weak, muscles getting tense or rigid, brief muscle twitching, or epileptic spasms where the body flexes and extends repeatedly. People also may experience absence seizures, which are staring spells.

Focal-onset seizures can start in one area or group of neurons in one part of the brain. Focal-onset aware seizures happen when the person is awake and aware during the seizure. This used to be called a simple partial seizure.

Focal-onset impaired awareness, which used to be called a complex partial seizure, is when the person is confused or their awareness is affected in some way during the seizure. Symptoms may include jerking, limp or weak muscles, tense or rigid muscles, brief muscle twitching, and repeated movements such as clapping or rubbing hands, lipsmacking or chewing, or running. Patients also may exhibit changes in sensation, emotions, thinking or cognition, gastrointestinal sensations, waves of heat or cold, goosebumps, or a racing heart.

If an unknown-onset seizure of this type isn’t witnessed by anyone, it may be diagnosed later as a focal or generalized seizure.

Education Needed

When people think of epileptic seizures, they often imagine what used to be called Grand Mal seizures. These are convulsions and can be very alarming for staff, Leppik says. People begin to jerk around and might lose control of their bladder or bowels. These types of seizures are easy to recognize, but when staff don’t know how to handle them, they may send patients to the hospital when they could be managed onsite.

“The first thing we need to do is educate everyone on what to do in terms of first aid for convulsive seizures,” Leppik says. “We have cards in our clinic we hand out to people with this information. In addition, every facility should have a protocol in place.” He suggests that videos and other materials can be helpful as well.

Seizures with more subtle signs are easy to miss or misinterpret. Sometimes practitioners and other team members need to be detectives and ask a lot of questions to determine if someone is indeed having seizures.

Rebecca O'DwyerFor example, Rebecca O’Dwyer, MD, assistant professor in the Department of Neurological Sciences at Rush Medical College, had an older patient who was excitedly looking forward to a family celebration. On the day of the event, his family reported that he “wasn’t quite himself, and he wasn’t excited.” They brought him to see O’Dwyer because he had no memory of the day and insisted he hadn’t been at the event.

“When we took a deeper history, we discovered he had days where he would just stare into space,” she recalls. It turns out that he was having seizures, but no one realized it. “The nice thing about seizures in the elderly is that when you get them under control, [the resident’s] cognition often improves,” says O’Dwyer, which was what happened with this patient.

Hold Off on Hospitalization

“We’ve found that many facilities don’t have a protocol for seizures, and staff often don’t know what to do when one occurs. As a result, they often send patients to the hospital or ER,” Leppik says, which is disruptive, costly, and often unnecessary. “Most patients recover in a few minutes, so the seizure is often over by the time the ambulance arrives.”

This situation can be avoided by having a seizure protocol that all staff are trained to follow, Leppik says. This would detail what to do to keep the patient safe and comfortable, what medications (if any) to use, and when it might be appropriate to send them to the ER. “A uniform plan will prevent confusion and give staff the confidence to care for patients who experience a seizure,” he suggests.

O’Dwyer adds, “Keeping the patient safe and comfortable can do more good than calling 911. Staff having appropriate training can give them the confidence to handle seizures safely and avoid unnecessary transfers to the hospital or ER.”

This means making sure they know what not to do as well as what to do.

For instance, O’Dwyer notes that people used to put something in a seizing person’s mouth to keep them from biting their tongue. “You don’t want to put anything in their mouth. They could bite you. Just get them flat, preferably on their side on the floor. Don’t try to stop their arms and legs from convulsing. Make sure there is nothing in their hands.” It can seem like a seizure goes on forever, O’Dwyer says, but in reality, it usually is only a few minutes.

If this is the person’s first seizure, O’Dwyer says, “Look for common triggers for when the patient is back to baseline.” These could include fever, stress, or lack of sleep. Often a further workup is necessary to determine what’s happening with the patient. A follow-up with a neurologist is important, but not immediately necessary.

However, O’Dwyer says, “Try to figure out why the patient had a seizure and follow up. If someone has an established diagnosis of epilepsy, their seizures will likely look similar every time. And this is important to know as well.” If the person becomes limp on one side, one side of the face droops, or doesn’t come back to baseline within 30 minutes, then consider that the patient has had a stroke and that an emergent evaluation will be necessary, she says.

Meds or No Meds?

Jumping right to pharmacologic treatment may not be the best intervention for long term care residents. All antiseizure drugs have significant drug interactions that may cause cognitive side effects. “We need more research to determine if it is appropriate to treat seizures with medications after the first seizure,” says Leppik. It may be advisable to monitor the person to see if they have additional seizures, realizing this could be an isolated event and not a condition requiring lifelong treatment. In fact, many older adults don’t experience another seizure episode after the first one.

Candidates for antiseizure medication therapy include those with recurrent seizures, an onset of epilepsy, or a clear predisposition for seizures. When medication is determined to be appropriate, it is recommended to start low and go slow with one antiseizure drug.

Learning More for Better Care

“We really need to get a current level of understanding and practice. Then we can develop resources for education programs based on what we find. We can’t develop these until we know what the level of knowledge and treatment is for facilities and practitioners,” says Leppik.

At that point, consistent information, clinical evidence, and best practices can be shared to improve seizure and epilepsy care and maximize quality of life for residents and confidence and peace of mind for staff.