Plain English summary
In 2006 Epilepsy Action helped fund a PhD studentship at the University of Sheffield looking at epilepsy and memory. Katharyn Hall was awarded the studentship. After three years of very hard work she received her PhD. Katharyn went on to train as a clinical psychologist at the University of Manchester.
A number of Epilepsy Action members took part in the research and Katharyn would like to thank everyone for their participation.
Below is a summary of the research.
Ninety eight people with epilepsy and 81 relatives took part in the main study, and many of these people also completed a follow-up one year later.
As a group, the overall verbal and visual memory scores were average. However, it was apparent that there was a wide range of memory abilities across people who took part in this study. While some people had difficulties with memory, others had excellent memory skills. (As a group, the average IQ score (general thinking abilities) was at the high end of the average range!)
As for other epilepsy research, verbal memory was reported to be the most impaired area of cognition (or thinking). The test scores showed that people’s immediate verbal memory skills were average but that they forgot verbal information over a 15-minute delay quicker than would be expected. People’s ratings of their memory were related to their performance on the delayed memory tests I carried out. These relationships between subjective memory and verbal forgetting scores suggest that memory complaints in epilepsy may be associated with poorer delayed memory.
In this study, we found that people who were taking more AEDs were more likely to have poorer attention and memory function. In addition, participants who had been diagnosed with epilepsy for longer and were older had worse visual memory and poorer memory after a delay. However, people’s memory abilities weren’t related to seizure severity, seizure frequency, or type of seizures.
Although there were some associations between people’s complaints of memory and their performance on the memory tests, there were fewer associations than might be expected. As for other studies in the area any significant associations were relatively small. This means that it is likely that people’s memory complaints in epilepsy are influenced by a variety of factors, rather than just their actual memory abilities. People’s perception of their memory was related to both their beliefs about their condition in general, and to their objective memory performance. Taken together, this suggests that, in epilepsy, memory complaints may be influenced by both objective memory impairment and the way in which people perceive their condition.
People who reported more difficulties with visual memory, attention, and language had worse quality of life. However, there were no relationships between visual memory, attention or language skills as measured by objective tests and quality of life. This is interesting because it shows that people’s perceptions of their memory have a stronger association with quality of life, than their actual level of memory ability.
In addition to investigating the nature of people’s memory complaints in epilepsy, we were also interested in how relatives are affected by epilepsy. Many people living with a long-term condition have also found that it can have an impact on the people around them, such as partners, relatives and friends. Unfortunately, the subject of epilepsy’s effects on relatives and friends has not yet received much attention. This is likely to be an important issue, as some people with epilepsy may have reduced independence and rely more on other family members. Obviously, this is not the case for all people with epilepsy, many of who live independently and do not require extra support from their families.
Our findings showed some differences in the way that patients and relatives perceive epilepsy. Most notably, relatives perceived fewer symptoms, less personal control, more consequences, and poorer containment over the disability effects of epilepsy.
Apart from reporting fewer symptoms, relatives’ perceptions of the condition were more negative. This finding suggests that they might be “maximising” the impact of the condition by perceiving greater problems than the person with epilepsy themselves. The study also established that as for other health conditions, relatives’ negative beliefs about epilepsy are associated with poorer adjustment and quality of life for people with epilepsy.
We also measured the coping styles that people with epilepsy and their relatives use. Research has already identified many general ways of coping. To help simplify matters, it is easiest to think of most strategies as either problem-focused or emotion-focused. A problem-focused approach is an active one where people try to find a solution to the problem they are faced with. In contrast, emotion-focused strategies are much less practical. People tend to focus on how they feel and distract themselves from the problem. They may avoid the situation and deny that anything is wrong.
In this study, participants with epilepsy used significantly more emotion-focused coping than relatives. As patients are experiencing the illness first-hand, they also experience a greater emotional response and therefore might employ more emotion-focused strategies to regulate this increased level of emotions. As for other coping literature in epilepsy, use of emotion-focused strategies, in both people with epilepsy and their relatives, was associated with greater anxiety.
As part of the project, I invited people to take part in a one-year follow-up. In this follow-up study we were interested in whether people’s beliefs about their condition had changed over time. Out of the original 98 participants, we were also able to interview 70 people one year later.
Our results showed that the way in which people perceive their epilepsy is fairly stable over time: for most people, the way in which they perceived their epilepsy did not change over the one-year period.
Interestingly, some of the beliefs people held about their epilepsy in the first part of the study were related to their adjustment and quality of life one year later. This is an important finding because it shows that beliefs people hold about their condition are one important predictor of their future adjustment and psychological health.
People who thought positively and believed that their epilepsy had less of an impact on their daily lives had a better quality of life one year later. This was regardless of the number or type of seizures that people reported.