On the Role of Caregivers in Epilepsy Treatment

November is epilepsy awareness month. Practical Neurology’s November 2023 issue focuses on updates in the evaluation, management, and treatment of genetic forms of epilepsy, and we invite you to check it out. We’d also like to highlight the role that caregivers play in epilepsy.

In clinical practice, much emphasis is placed on the relationship between patient and physician. It is important also to remember the vital, multifaceted role of caregivers, who provide physical, medical, and emotional support to their loved ones living with epilepsy. They also serve as mediators and advocates in interactions with health care providers (HCPs) and as educators in the patients’ wider community. Oftentimes, caregivers can provide physicians with unique insight into signs, symptoms, triggers, and patterns that patients themselves may not be able to remember or recognize. In this way, caregiver, patient, and physician can work together to achieve the best possible care and treatment.

Actor, producer, and comic book artist Greg Grunberg is well known for his roles in the television series Heroes and the Star Wars film franchise, but he and his wife Elizabeth also play the vital role of caregiver for their adult son, Jake. As a child, Jake showed symptoms of seizure during car rides. Greg and Elizabeth discussed these symptoms with their son’s teacher, who confirmed that Jake presented seizure-associated behaviors in school. Jake was subsequently diagnosed with epilepsy at age 7, after experiencing a seizure in the presence of his physician. Jake’s diagnostic journey exemplifies how patient, physician, and caregiver can collaborate to reach a diagnosis. Now a young man, Jake lives a happy and active life as an instructor of Tae Kwon Do martial arts.

Through his experience raising Jake, Greg has become passionate about caregiving, and has started the Talk About It! podcast to raise awareness about epilepsy and to address stigma. He has also recently partnered with Jazz Pharmaceuticals to develop The Care Giver series, specifically focused on building community among caregivers, predicated on the idea that the best way for caregivers to learn is by talking to other caregivers. The Practical Neurology team sat down with Greg to discuss the integral part that caregivers play in the treatment for epilepsy, and how they fit into the relationship between patient and physician. Greg identified 3 critical concepts as a framework for the role of a caregiver.

1. Caregivers are a vital part of treatment for conditions such as epilepsy. Caregivers can be present at times when a physician cannot, and they can relay information to a physician to assist in diagnosis, disease management, and treatment. Their role is especially critical for conditions such as epilepsy, in which a patient might not remember the events leading up to a seizure and may not recall specific behaviors that would provide key insight to a physician.

“Pay attention to everything that’s happening with your child or spouse or your partner or whoever,” said Greg regarding observing and relaying symptoms to physicians. “Look at what happened right before [the seizure]. Did they have a lack of sleep? Were they fatigued? Were they stressed out? Did their diet change? Did they do drugs? Did they drink alcohol in combination with something? Whatever. Just be hyper aware and jot things down, make notes. If a seizure happens, time it.”

Greg further noted that physicians and caregivers can regularly communicate as treatment technology advances, and new medications are developed. “If you hear something on the internet, or you hear something on the news or whatever, ask your doctor. Talk about it with your physician. Bring these things up and say, ‘Hey, I’ve heard about this. Can this work? Does this apply to me?’”

2. Caregivers can communicate with one another to share their experiences and form a mutually supportive community. Having a loved one receive a diagnosis with a condition such as epilepsy can be challenging. Greg notes that it is important for caregivers to remember that they are not alone. “There are 3+ million people in the United States alone who are dealing with epilepsy. So, you add their friends, family, and it ripples out to tens of millions of people affected by this or who know people that are affected by this.”

By communicating with one another, caregivers of people with epilepsy can share information, techniques, and advice for seeking the best care for their loved ones. Also, critically, the caregiving community functions as a source of emotional support for the caregivers themselves. As Greg noted, “As a caregiver, you have to take care of yourself to be able to take care of others.” Caregivers have first-hand knowledge of the challenges involved in caring for someone with epilepsy and are therefore uniquely equipped to reassure and assist one another.

3. Finally, Greg emphasized the role that caregivers play in spreading awareness and knowledge about neurologic disorders and conditions. This aspect of the caregiver role is particularly important in reducing the impact of stigma, which can serve as a barrier for treatment for people with epilepsy. Notably, by sharing their knowledge, caregivers of people with epilepsy can help to decrease the risk of injury during seizure on a community level, equipping others to act and assist should they see somebody show symptoms of seizure in their daily lives. “Someone needs to get this conversation going and encourage people not to be afraid or ashamed, but to talk about it. Because if people around you know what to do in case you have a seizure, then you’re safer.”

Greg envisions a future where knowing how to intervene during seizure is as commonplace as CPR or the Heimlich maneuver. And what should we do if we see someone experience a seizure? Protect the head!

For more information, listen to the full interview with Greg Grunberg on the Practical Neurology website. Greg Grunberg’s "Talk About It!" podcast is available at TalkAboutIt.org, and his series "The Care Giver" is available at TheCareGiverSeries.com