Living with epilepsy accompanied by cognitive difficulties: young adults' experiences.
OBJECTIVE
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.


METHODS
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.
Division of Neurology, Medical Faculty/IKE, Linköping University, Sweden. helena.gauffin@lio.se
Helena
H
Gauffin
Gullvi
G
Flensner
Anne-Marie
AM
Landtblom
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D003072:Cognition Disorders / Q000209:etiology*; D004827:Epilepsy / Q000150:complications* / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008569:Memory Disorders / Q000209:etiology; D009483:Neuropsychological Tests; D011788:Quality of Life; D055815:Young Adult