Memory impairments are often a frustrating and disheartening experience for many people living with epilepsy.
Seizures and memory loss frequently go hand in hand, posing unique challenges for people with epilepsy. Not only is it hard to remember little day-to-day details, but having memory impairments can also lead to more pervasive difficulties, like occupational stress, educational road bumps, and interpersonal struggles.
Most significantly of all, memory impairment makes it hard to accurately track seizures and medication, which can in turn lead to having even more seizures. It can easily become a vicious cycle, which is why it’s so important to have strategies in place to break the loop and lead a more empowered life.
To help shed light on this important issue, we spoke with Shannon Wills, Programs and Client Services Manager at the Epilepsy Foundation of San Diego County, to learn more about the challenges—and solutions—associated with memory impairment in epilepsy.
This Q&A interview has been lightly edited for clarity.
Could you tell us about your role at the Epilepsy Foundation of San Diego County and what services you offer for people with epilepsy?
I am a social worker and the Programs and Client Services Manager at the Epilepsy Foundation of San Diego County. We offer a variety of supportive services, including individual and family counseling, weekly support groups, music therapy for children, resources and referrals, advocacy, and community education. We also have annual programs such as our kids camp, family camp, scholarship program, and our Sharon’s Ride.Run.Walk.
What are some programs that the Epilepsy Foundation offers to tackle memory issues, and how do they work?
HOBSCOTCH (HOme Based Self-management and COgnitive Training CHanges lives) is a program specifically designed to deal with memory issues in people with epilepsy offered throughout the Epilepsy Foundation network. In partnership with a Memory Coach, individuals with epilepsy will identify their memory-related issues and find solutions to manage these issues. It is typically done in 8 sessions, and they are held both in-person and virtually. This program is free, and availability varies by chapter and affiliate.
Though not a memory-related specific program, we have also seen creative solutions around memory issues arise in our support groups. People living with epilepsy are the experts, and when they can gather and share their expertise with others enduring similar struggles, creative solutions can blossom.
What are some of the most common concerns, difficulties, and fears surrounding memory impairment that you hear about from your clients? How does it affect their day-to-day life?
There are a lot of concerns surrounding memory impairment. For those that develop seizures and memory issues in adulthood, they sometimes lose a sense of identity. If you are a person who always had a good memory, or your job depends on your memory, you may stop feeling like yourself and worry about how this new you will function in the world.
And anyone with seizures, regardless of age of diagnosis, worries about how that will impact them in the workplace. What if you get a job and can’t remember your daily tasks? Or you have to be re-taught things? Or you can’t remember something so you make a critical error? These are the things that might run through someone’s head as they try to imagine working with memory struggles.
If you are in school with memory impairment, classwork can be very difficult. Many children with epilepsy need academic accommodation through 504s and IEPs (Individualized Education Program), not because their intellect suffers, but oftentimes their memory is impacted. Things may need to be re-taught, they may require multimodal learning, and they may need individual support.
Building and maintaining relationships may also prove difficult if you have memory loss. If you can’t remember meeting people, it is difficult to establish a rapport with them. Sometimes in romantic relationships, the person may forget important things their partner told them, which can lead to hurt feelings. These are all elements that someone struggling with their memory may face.
More specifically to epilepsy, we’ve heard that memory hiccups can make it difficult to accurately track seizures and identify triggers. Do you have any tips here?
Tracking seizures is really key, and struggles with memory can make it difficult. Keeping a journal is something we recommend to anyone who has seizures so that you can track all the elements of your life—stress, sleep, diet, exercise, etc.—to help identify if there are contributing causes to your seizures. Writing down when you had a seizure in that diary, including the time it happened and the duration, is another way to make sure you won’t forget the details of it a few days later.
There are also a lot of wearable devices out there to help track seizures. They have apps, detectors on watches, and watches specifically designed to monitor seizures and keep records of it for you. The effectiveness of these devices depends on a lot of things, particularly the types of seizures you have, but we always recommend asking your neurologist about what supportive devices might be good for you.
Is there anything that seems to make memory problems worse in people with epilepsy?
Taking good care of your body is really important if you have epilepsy. This includes managing stress, getting a full night’s sleep, eating well, and exercising. I am not a medical doctor, but people we see typically have memory issues from the seizures themselves (or the subclinical seizure activity) and/or the medication they are on.
So, make sure you track in a journal or app what is going on surrounding the time you have a seizure or when you have changes to your medication, because perhaps memory could be improved by switching medications or lowering your dose. If you have tracked these things and can bring it to your doctor, together you and your neurologist can come up with a plan to help control your seizures and have a high quality of life on medication.
How can caregivers, loved ones, doctors, and people without epilepsy support someone who is struggling with memory impairment due to their seizures?
One of the most important things you can do is ask, “How can I support you?” To invite the person to tell you what would be helpful for them is the most supportive thing you can do, instead of assuming or taking on roles that aren’t yours to take. Really listening to the person about what it feels like to have seizures and memory loss, affirming them, and then letting them decide how their network can best support them is really the way to keep the person with epilepsy empowered in their life.
Things that could potentially be helpful would be to serve as a gentle reminder for things like medication, or helping them keep track of things and set up systems that may help them (such as making a specific spot right by the door for their keys, so they don’t keep forgetting where they are). Identifying and (gently) addressing where you see their memory impacted can also be helpful, since the person may not be aware of that pattern.
Another key thing is patience. If you are a loved one of someone with epilepsy and memory impairment, it can absolutely be frustrating. But remember that the person experiencing it did not ask to be in this position, so being gentle and patient with them as they try to figure out how to thrive with these struggles is another really important way to show up for them.
To learn more about the Epilepsy Foundation of San Diego County, visit their website at https://epilepsysandiego.org/