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of everyone affected by epilepsy

Carers of people with epilepsy and a learning disability

This information is for carers of people with epilepsy and a learning disability

Introduction

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.

Health information

Follow the links for general information about the:

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 of them 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.

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.

Code: 
B010.03

Our thanks to Professor M. Kerr, Welsh Centre for Learning Disabilities, who reviewed and contributed to this information.

Professor M. Kerr has no conflict of interest to declare.

This information has been produced under the terms of The Information Standard.

  • Updated November 2015
    To be reviewed November 2018

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