How to Support Someone With Epilepsy

01 March 2024

There are currently 600,000 people living with epilepsy in the UK and 87 people are diagnosed with it every day.

Understanding how to provide meaningful support not only empowers caregivers but also plays a crucial role in enhancing the quality of life for those navigating their epilepsy journey.

In this article, we will offer tips and guidance to help you support someone with epilepsy and give you a fundamental understanding of the condition. This will also help equip you with the knowledge and tools you need.

What is epilepsy?

“Epilepsy is a common condition that affects the brain and causes frequent seizures.” Everyone’s experience of epilepsy is different and seizures vary in severity and frequency. Because of this, treatment plans are tailored to the specific needs of each person aiming to minimise seizures and enhance the overall quality of life for those living with the condition. However infrequent seizures are for the sufferer, it can be challenging not knowing when they might suffer one and always needing to be prepared in case they do.

Is epilepsy a disability?

Because the symptoms of epilepsy are variable, the question of whether epilepsy is a disability is very dependent on the severity of the seizures being experienced. “Epilepsy is considered a disability when it greatly affects someone’s ability to do everyday activities over a long period of time.”

Epilepsy is often referred to as a hidden disability or non-visible disability as it is not obvious that someone is living with epilepsy unless they experience a seizure. If the person you are supporting is struggling to live with their epilepsy on a daily basis, they may be entitled to some benefits to help improve their quality of life. These include:

What are the symptoms of epilepsy?

Symptoms of epilepsy appear as seizures; the presentation of which varies from person to person. No two people will experience seizures in the same way meaning that some may be very obvious, whilst others are more subtle and over in moments. Someone experiencing an epileptic seizure may experience:

Collapsing
Losing control and awareness of their body
Staring blankly into space
Jerking and shaking uncontrollably
Becoming stiff
Strange sensations including a rising feeling in their body, tingling and strange smells or tastes
Twitching eyelids

How to support someone with epilepsy

If you spend a lot of time with someone who is living with epilepsy, it would be a good idea to get to know their condition and find out what you can do that would support them in the best way.

Get to know their condition

Bear in mind that for the person you are supporting, talking about their epilepsy may not be easy. Everyone deals with health conditions differently and some people find it hard to be vulnerable and ask for help. Discussing practicalities is a good place to start. Find out where medications are kept and what dosage should be administered. You can also ask if there is anything specific they would like you to do during a seizure and ask them to explain what is normal for them so you are aware of anything that is out of the ordinary. This will also help you to know when you should seek medical help. You could also enrol yourself in a first aid course to equip you with the knowledge and tools to help support the person you are caring for.

Offer emotional support

Epilepsy can make someone feel very vulnerable at times and even unsafe. It is important to engage in open and honest conversations with the person affected and encourage them to share their thoughts and feelings without judgement. It is important to consider the impact that seizures may have on their self-esteem and emotional well-being so offer reassurance and remind them of their strengths.

Driving assistance

When a person is first diagnosed with epilepsy it is vitally important that they stop driving straight away and inform the DVLA of their condition. This is for the safety of the person and others around them. Although it is in their best interest, it can feel very debilitating to have their licence taken away so any assistance you can offer with driving may really help.

Understand their triggers

There may be certain triggers that will start a seizure and it is important to understand what these are. Some may be unavoidable whilst others can be managed. Common triggers include:

Missing medication
Stress and fatigue
Alcohol and recreational drugs
Menstrual cycle
Having an illness that causes a high fever
Not eating enough
Flashing or flickering lights

What is normal for them?

Take the time to understand what a normal seizure is like for the person you are supporting. How long does it last? What symptoms do they usually display? Not only will this help prepare you for when they have a seizure but it will also help them know that you are well-versed in what will happen and how you can best support them.

Caring for someone having a seizure

Everyone experiences seizures in very different ways but there are some basic tips to follow to ensure that you are handling the situation in the best way possible for the person you are supporting. These include:

If possible, help the person onto the floor or make sure they won’t fall from where they are sitting or lying.
Clear away any obstructive items to make sure they don’t injure themselves on anything.
Loosen any tight clothing and remove glasses or anything around the neck such as a tie that may make breathing difficult.
Do not place anything in their mouth.
Place a soft item such as a cushion or jumper under their head.
Time how long the seizure lasts.
If the person is in a wheelchair, put the brakes on and fasten any harnesses or seatbelts. Support them gently, being sure not to restrict their movements and make sure their head is cushioned.
If you know the person, be aware of anything that is not normal for them during a seizure. If you do not know the person, check for a medical bracelet or any other emergency information they may have on them.
Keep yourself and others calm and encourage any crowds to move on as most people prefer not to have an audience.
Allow the person to move freely during the seizure and stay with them until it has finished. Do not try and hold the person down or stop any movement.
When the seizure has stopped and the person is fully alert, food and water may be offered. It should not be offered before this time.

When should you seek medical help?

Although many people are able to manage their seizures without seeking any medical attention, there are some exceptions. These include:

If the seizure is longer than five minutes long
If it is the first seizure the person has had
If the person injures themselves during a seizure
If the seizure happens in water
If the person seizing also has another medical condition
If the person has difficulty breathing or can’t be woken after the seizure

Do you need support caring for someone with epilepsy?

If you are caring for someone in Essex with epilepsy and you would like some support, we have a range of services to assist you.

Butterfly’s is a highly professional, family-run care group who are passionate about delivering exemplary care along with our team of local, fully-trained carers. If you would like to speak to us about the care needs of a loved one, contact us today.