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Living with epilepsy accompanied by cognitive difficulties: Young adults experiences
Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Neurology.
University of West, Trollhattan, Sweden .
Linköping University, Department of Clinical and Experimental Medicine, Neurology. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Neurology. Östergötlands Läns Landsting, Local Health Care Services in the West of Östergötland, Department of Medical Specialist.
2011 (English)In: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 22, no 4, 750-758 p.Article in journal (Refereed) Published
Abstract [en]

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. less thanbrgreater than less thanbrgreater thanMethod: 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. less thanbrgreater than less thanbrgreater thanResults: Four themes emerged: "affecting the whole person," "influencing daily life," "affecting relationships," and "meeting ignorance in society." less thanbrgreater than less thanbrgreater thanConclusions: 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.

Place, publisher, year, edition, pages
Elsevier , 2011. Vol. 22, no 4, 750-758 p.
Keyword [en]
Epilepsy, Young adults, Cognition, Memory problems, Focus group interviews, Qualitative study, Daily life
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-74162DOI: 10.1016/j.yebeh.2011.09.007ISI: 000298067600020OAI: oai:DiVA.org:liu-74162DiVA: diva2:480847
Available from: 2012-01-20 Created: 2012-01-20 Last updated: 2017-12-08
In thesis
1. Epilepsy in young adulthood: medical, psychosocial and functional aspects
Open this publication in new window or tab >>Epilepsy in young adulthood: medical, psychosocial and functional aspects
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of this thesis was to describe the medical, cognitive and psychosocial consequences of epilepsy in young adulthood. Four studies were carried out with this patient group. The first two papers were based on a follow-up study regarding young adults with epilepsy that investigated medical and psychosocial aspects and compared the present results with those five years earlier. We then conducted focus group interviews with young adults with epilepsy and subjective cognitive decline to assess the deeper meaning of living with epilepsy accompanied by cognitive difficulties. In the fourth study we studied cognitive dysfunction further, choosing the language function in young adults with epilepsy. We firstly examined whether language impairments were associated to functional brain alterations and secondly related the language performance to demographics, clinical data, Quality of Life (QoL) and self-esteem.

The five-year follow up of 97 young adults with uncomplicated epilepsy revealed no improvement regarding seizure frequency or side effects from anti-epileptic drugs (AEDs) over time, even though many new-generation AEDs had been established during this period. During the study period 21% had recovered from epilepsy, Seizure frequency among those who still had epilepsy had not improved, and 42% had experienced seizures during the past year. New-generation anti-epileptic drugs (AEDs) had been introduced to PWE, especially to women. There is still need for new and more effective treatment options for this group in the future. It is essential to find alternative approaches to develop better treatment options for this group in the future. However QoL was normal compared to the general population, indicating that new options regarding treatment can have made an impact. Lower QoL was correlated to high seizure frequency and to cognitive side effects. Self-esteem and Sence of Coherence were impaired compared to the situation at adolescence. Self-esteem was correlated to seizure frequency and to side-effects of antiepileptic drugs. Sence of Coherence was not correlated to epilepsy-related factors in the same way as QoL, but mirrored the phenomenon of epilepsy.

The qualitative study showed that the consequences of epilepsy are not only restricted to the consequences of seizures, but also concerns many other aspects of life. The interviews revealed four themes: “affecting the whole person“, “influencing daily life”, ”affecting relations” and ”meeting ignorance in society”. Another important factor was language function; when one loses some language ability, this gives a feeling of losing one’s capability.

The fourth study examined language by neuropsychological methods and correlated this function to brain activation measured by fMRI. Language functions measured in verbal fluency and abstract language comprehension were impaired in participants with both generalized epilepsy and epilepsy of focal onset. Age at onset of epilepsy and education are the most important factors correlating to language function. An additional factor that impacts abstract language comprehension is the frequency of convulsive seizures, while use of topiramate /zonisamide affect verbal fluency negatively. QoL was not correlated to language impairments, but for patients with focal onset seizures there was a correlation between self-esteem and abstract language comprehension. The fMRI investigation revealed altered activity during language tasks in participants with epilepsy compared to controls. In epilepsy with focal seizures originating in the left hemisphere, we found increased bilateral activation of supporting areas, in the anterior mid-cingulate cortex and the anterior ventral insulae, indicating a compensational functional reorganization. In generalized epilepsy, the functional language network showed an imbalance, as this group expressed an inadequate suppression of activation in the anterior temporal lobe during semantic processing. Subtle language impairment can, even if it does not occur in everyday dialogue, be of importance and have consequences for the person affected. The negative consequences of language decline must be addressed in people with epilepsy of different etiology. Young adults with epilepsy are still substantially affected by the condition. The consequences are not only restricted to the seizures, but concern many aspects of life and there is a great need for new treatment options for this group in the future.

Place, publisher, year, edition, pages
Lin: Linköping University Electronic Press, 2012. 66 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1309
Keyword
Epilepsy, young adult, Quality of Life, self-esteem, daily life, antiepileptic drugs, cognition, language, fMRI, Sence of Coherence
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-80388 (URN)978-91-7519-893-4 (ISBN)
Public defence
2012-09-13, Linden, Hälsouniversitetet, Campus US, Linköpings universitet, Linköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2012-08-24 Created: 2012-08-24 Last updated: 2013-09-04Bibliographically approved

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Gauffin, HelenaLandtblom, Anne-Marie

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