Epilepsy can sometimes be followed by memory impairment. This can result from the underlying cause of epilepsy or from recurrent seizures, or can be a side effect of antiepileptic drugs or a symptom of another disease such as depression. The aim of the study described here was to explore the experience of living with epilepsy and subjective cognitive decline.

Method

To better understand the deeper meaning of the phenomenon, a qualitative design was chosen. Fourteen adults aged 18–35 took part in focus group interviews. The participants were divided into four groups, two groups of women and two groups of men, and the interviews were conducted according to a semistructured protocol. Transcripts were analyzed in accordance with the content analysis guidelines.

Results

Four themes emerged: “affecting the whole person,” “influencing daily life,” “affecting relationships,” and “meeting ignorance in society.”

Conclusions

Cognitive decline has a heavy impact on young adults with intractable epilepsy. In contrast to seizures, the cognitive decline is persistent. The themes reflected different hardships faced by the participants. The consequences of living with epilepsy and cognitive impairment concerned education, employment, social life, self-esteem, and hope for the future. The participants were already using strategies to cope with their cognitive decline, but may benefit from help in developing new strategies to better adjust to their memory problems. Development of more educational programs for both people with epilepsy and their relatives could improve their difficult situations. With help, people can learn to adjust their goals in life and live a fulfilling life despite the disease.

Highlights

► Cognitive decline has a heavy impact on young adults with intractable epilepsy. ► It has consequences for employment, social life, self-esteem, and future plans. ► Participants employed many strategies to cope with their cognitive decline. ► Young people with epilepsy would benefit from help to better adjust to memory problems.