Page 389 - ILAE_Lectures_2015

the greatest concerns. Fears expressed include the potential inheritability of epilepsy and the
possibility that antiepileptic drugs may lead to birth defects7. As children grow older, parental
vigilance may intensify as a watch is kept for any behaviour or physical sign that might herald
the onset of epilepsy in their child. Older children may behave over protectively towards the
parent with epilepsy and may exhibit worrying behaviours, such as non-attendance school.

Social networks

Children and young people with epilepsy report concerns regarding difficulties forming
friendships 8. The ability to develop effective social networks greatly influences how we cope
in society. Social support is an established positive mediating factor which, irrespective of
seizure control, has been shown to be related to a better quality of life, life satisfaction and
health status. A recent population-based study found that the people most debilitated by their
epilepsy were those that had limited social support9.

Many factors may underlie social isolation, including anxiety, parental over-protectiveness,
lack of employment and limited activities outside the home. Anxiety may impact on social
presentation; a very anxious person may appear awkward, and even rude. Where anxiety
underlies social difficulties, stress management techniques may have a role.

Stigma may impede the development of social networks. In a survey of almost 20,000 young
people in the USA two-thirds stated they would not date a person with epilepsy and the
authors concluded that the social environment for adolescents with epilepsy is characterised
by stigma and lack of accurate knowledge about the condition10.

People with epilepsy should be encouraged to reap the benefits of social networking sites,
epilepsy forums and support groups. These outlets can provide emotional support, contacts
and information, and may help to reduce feelings of isolation. In addition, some people may
benefit from cognitive behavioural therapy (CBT) and other interventions aimed at reducing
social anxiety and developing social skills11.

Neuropsychological deficits (see also Chapter 41)

People with epilepsy have an increased risk of cognitive deficits. Much attention has been
focused on memory impairments but more recently disorders of social cognition have been
highlighted12. Cognitive difficulties will reduce the chances of academic success and reduce
employment opportunities. For individuals experiencing problems, a neuropsychological
assessment may help to identify cognitive difficulties and may assist in the setting of realistic
employment and educational goals. Memory deficits may lead to a loss of confidence in social
settings and feelings of inadequacy. Memory rehabilitation that addresses the broader impact
of memory disorders may prove beneficial13.

Emotional adjustment

Living with epilepsy means coping with an uncertain prognosis regarding seizure control.
Epilepsy carries increased risks of mortality and morbidity. Having epilepsy may mean
coping with additional hidden deficits such as language and memory problems, or with other
co-morbidities.

Diagnosis and prognosis aside, individuals have to cope with ongoing seizures. For some,
these may be rare, short-lived episodes, but for others, epileptic attacks may involve bizarre
behaviours, distorted awareness and perception, and embarrassing aspects such as
incontinence. The unpredictability of seizures may erode self confidence and self-esteem.
Public misunderstandings and stigma cause additional stress.