Epilepsy Action Membership Survey - July 2003
Summary of Findings
Later life is a common time for people to develop seizures. While people who are diagnosed after the age of sixty do share similar experiences, concerns and needs as other people living with epilepsy, there is evidence that this group experiences an increased risk of anxiety and a perceived reduction in their quality of life compared with people diagnosed at a younger age. This research aims to provide a brief overview of the experience of people diagnosed with epilepsy after the age of sixty. The study concentrates on the information and support given to the older person with epilepsy.
Overall results indicate that 50 per cent of patients felt they had not had their diagnosis of epilepsy adequately explained to them, and that they did not receive sufficient information about the side-effects the condition may cause. In addition, the view was voiced by several respondents that they felt they were not treated with respect, or their epilepsy was not taken seriously.
As expected the vast majority of respondents (97 per cent) were taking anti-epileptic medication. While 61 per cent of respondents considered that they had been told why they had been prescribed this medication, there was an apparent lack of discussion about the possible side-effects, although the majority of people felt they were able to talk to their doctor if side-effects occurred. By far the most common source of information about possible side-effects was the Patient Information Leaflet in the medication packaging. Indeed for 47 per cent respondents this was their only source of information.
There appears to be a shortfall in the verbal and written advice and information actually offered to older people with epilepsy. However, it was positive that a large number of respondents felt that they were able to access ongoing information about epilepsy when required. In particular, specialist nurses and Epilepsy Action were identified as invaluable sources of support.
Several respondents expressed concerns about such issues as medication; living alone and stigma. This research suggests that increased information about what a diagnosis of epilepsy means, and information on the treatment and support available, can help older people maintain their quality of life and independence. Based on the findings of this research a number of recommendations were made.
- People diagnosed with epilepsy in later life should be given the same level of care, treatment and support as younger patients.
- More time should be spent explaining about epilepsy at the time of diagnosis. This explanation should be backed up with written material.
- Information appropriate for older people diagnosed with epilepsy should be more freely available, and routinely offered throughout their lives.
- There is a need for an integrated and specific support service for older people with epilepsy.
- The level of education and awareness about epilepsy needs to be raised, not only within the medical profession, but amongst the general public.
This study highlights the need for further research into the advice, information and support available to older people with epilepsy.