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of everyone affected by epilepsy

Survey says many older people stigmatised by epilepsy

12 May, 2005

One third of
older people with epilepsy have experienced stigma because of their
condition, according to new research by the charity Epilepsy Action.

people are now, the charity claims, emerging as the largest single
group with epilepsy and the theme of this year's National Epilepsy Week
(15-21 May) is ‘Epilepsy in Later Life'. The recent Epilepsy Action
survey of members aged 60 and over also found that one third of older
people who responded believe that epilepsy affects their relationships
with family and friends.

This picture of the problems experienced by older people with epilepsy is supported by the findings of a MORI Social Research Institute
survey of geriatricians, also commissioned by Epilepsy Action. Of the
geriatricians surveyed, 53 per cent believe that a number of social and
psychological effects are more of a problem for older people with
epilepsy than others with the condition. These may include lack of
independence, lack of confidence and loneliness.

per cent of geriatricians recognise that physical effects are more of a
problem for older people with epilepsy than others with the condition.
These may include side effects from drugs/drug interactions, risk of
injury from falls and confusion. In addition, the survey found that one
third of geriatricians are unaware that the National Institute for Health and Clinical Excellence (NICE) has recently issued guidance for the diagnosis and management of epilepsy.

The NICE guideline on epilepsy
states that information on a range of issues should be made available
to patients to empower them to manage their condition, yet older
Epilepsy Action members highlighted a serious shortfall in advice and
information. Nearly 40 per cent of respondents to the Epilepsy Action
members survey were not provided with adequate written information
about epilepsy. The charity says that this is despite the fact that
older patients are particularly at risk of epilepsy drug side effects,
and are more likely to experience interactions between epilepsy drugs
and other medications.

Action claims that as a consequence of stigma, many older people with
epilepsy do not come forward to have regular specialist reviews and are
resigned to the burden of unacceptable side effects and increased
seizure frequencies. However, these can often be easily rectified and
addressed by a specialist review. The charity believes that a change in
attitudes towards epilepsy is essential before services can be improved
and older people can live as fulfilling a life - with epilepsy - as