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Learning disability
Questions from healthcare professionals
Q: Question: Are there any guidelines or policies about advising/informing people with learning disabilities and epilepsy about the risk of SUDEP?
A: It is difficult to give general advice, as it depends on the individual's learning disability and level of communication and understanding. In general, the principles are that patients should be informed of all the risks of ongoing seizures, including SUDEP, in a manner appropriate to the individual. The risks need to be emphasised in individuals who have medicines adherence or compliance issues. It is also important to include carers (both family and friends and professional carers) so that they to understand the risks and can best support and supervise the individual. In patients with moderate to severe learning disabilities the information given needs to be balanced with their level of understanding and the potential distress that such information may cause to both the patient and their carer. This is particularly so when seizure freedom may not be achievable despite best efforts to treat.
Answered by Epilepsy Society's medical team
February 2011
Q: Do most generalised seizures in people with severe learning disabilities start focally (even those which appear to be primary generalised)? If not, roughly how common are true primary generalised seizures in this group?
A: Issues relating to epilepsy and learning disabilities are covered in the chapter Epilepsy and learning disability (pdf) in the library of articles on this website. This chapter also contains a number of references listed at the back which may be of interest.
Q: Is there a higher incidence of non-epileptic attack disorder (NEAD) in people with a learning disability?
A: There isn’t any clear information on the epidemiology of NEAD in learning disability, but it’s generally felt that learning disability is a predisposing factor. The following paper may be of interest: Reuber et al 2003 Psychogenic non-epileptic seizures : a review and update: Epilepsy & Behavior 4 205-216.
August 2005
Q: Do you have any figures that give an indication of how many people with a learning disability and epilepsy achieve seizure freedom?
A: This is very much dependent on the background aetiology for the epilepsy and learning disability and also the duration of the condition. Probably about 30 to 50% achieve seizure freedom.
April 2004
Please note: Epilepsy Society is unable to provide a medical opinion on specific cases. Responses contain information relating to the general principles of investigation and management. Answers are not, and should not be assumed to be, direct medical advice.
