This information is for carers of people with epilepsy and a learning disability
This information is for carers of someone with epilepsy and a learning disability. By carer we mean anyone who is caring for someone as a family member, friend or support worker.
In the first section you’ll find health information. This covers the link between epilepsy and learning disabilities and facts about epilepsy and epilepsy medicines. We also look at how to get the best care and treatment for the person you look after.
The second section covers information on living with epilepsy. This includes education and the equality laws. And we signpost you to information on social care and financial support. Finally there’s a list of useful organisations.
Being a carer
Caring for someone can be a real joy. And it can be really demanding.
Among other things it can be hard to:
- Get the information you need about the person you’re looking after
- Get service providers to take your role seriously and involve you in information and decisions
- Have enough time and energy to find places of possible support for you both
- Stay healthy enough in mind and body to continue being the best carer you can be
We hope these pages will help you with some of those things.
The link between epilepsy and learning disabilities
People with a learning disability are not one group. There will be major differences between the experiences of people with mild, moderate and severe learning disabilities.
Out of every 100 people with a learning disability, around 22 also have epilepsy. This means epilepsy affects about one in five people with a learning disability.
The more severe the learning disability the higher the possibility that the person will also have epilepsy.
A smaller number of people with Down’s syndrome have epilepsy (two out of every 100). But if someone with Down’s syndrome also has dementia, they are then much more likely to develop epilepsy.
As a carer you will know it’s harder to support someone and to access care for them when they have two or more health conditions.
Definition of epilepsy
In the UK, there are over 600,000 people with epilepsy.
Having epilepsy means that you have a tendency to have epileptic seizures.
Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This is often referred to as epileptic activity. The epileptic activity causes a temporary disruption to the way the brain normally works, so the brain’s messages become mixed up. The brain is responsible for all the functions of the body. What happens during a seizure will depend on where in the brain the epileptic activity begins, and how widely and quickly it spreads.
Epilepsy can start at any age and there are many different types. Some types of epilepsy last for a limited time and the person eventually stops having seizures. But for many people epilepsy is a life-long condition.
Causes of epilepsy
Some people develop epilepsy because of brain damage caused by a difficult birth, a severe blow to the head, a stroke, or an infection of the brain such as meningitis. Very occasionally the cause is a brain tumour.
For people with a learning disability, the cause of their learning disability can also be the cause of their epilepsy.
As doctors understand the causes of learning disability better it is becoming clear that certain genetic causes, such as in Rett syndrome or Angelman syndrome, are linked with particular patterns of epilepsy. A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition.
In around 6 out of 10 people, doctors don’t know the cause of their epilepsy.
Different seizure types
There are a lot of different seizure types. They can happen in any part of the brain. Some seizures are generalised, meaning they affect both halves of the brain. Others are focal, meaning they affect a small part of the brain.
Epilepsy Action has more information about seizure types.
NICE (National Institute for Health and Care Excellence) guidelines and diagnostic tests
NICE is an independent organisation that provides guidelines for treatment and care for people using the NHS in England, Northern Ireland and Wales. The guidelines are for healthcare professionals, local authorities, charities, and patients and their carers. They are to help them make decisions about healthcare, public health or social care services. They are also to make you aware of the services available, and to have the confidence to ask for the treatment, care, and information you need.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.
Epilepsy Action would like to thank Dr Lance Watkins Consultant Psychiatrist, Neath Port Talbot Community Learning Disability Team for his contribution to this information.
He has no conflict of interest to declare.
This information has been produced under the terms of The Information Standard.
- Updated November 2018To be reviewed November 2021