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Epilepsy is one of the most common neurological disorders of late adulthood, yet little research has examined the impact of epilepsy on the quality of life of older people. Current measures of health-related quality of life (HRQOL) have been developed and used almost exclusively in adults under the age of 65. The issues, which affect HRQOL in younger adults, may differ from those which affect older adults who may have age-related physical limitations and multiple co-morbidities. This study sought to explore the HRQOL and psychosocial function of a community dwelling sample of 64 older adults with epilepsy compared with a similar, age-matched control group. An additional objective of the study was to examine the impact of perceived stigma and seizure frequency on HRQOL and psychosocial well-being. Results indicated that HRQOL and psychosocial functioning in the epilepsy group was significantly impaired relative to normal controls. A greater perception of stigma and more frequent seizures was also strongly related to poor quality of life and reduced psychosocial function. Although more than two thirds of the sample had seizure frequency of less than one per year, it was apparent that even infrequent seizures had the facility to impair HRQOL, suggesting that in older adults, the apprehension induced by even the possibility of a seizure may be sufficient to reduce HRQOL. The results have implications for the clinical management of epilepsy and suggest the need for further research in older populations.
Seizure 2008 Apr
PMID:Stigma, seizure frequency and quality of life: the impact of epilepsy in late adulthood. 1793 45

Revered in some cultures but persecuted by most others, epilepsy patients have, throughout history, been linked with the divine, demonic, and supernatural. Clinical observations during the past 150 years support an association between religious experiences during (ictal), after (postictal), and in between (interictal) seizures. In addition, epileptic seizures may increase, alter, or decrease religious experience especially in a small group of patients with temporal lobe epilepsy (TLE). Literature surveys have revealed that between .4% and 3.1% of partial epilepsy patients had ictal religious experiences; higher frequencies are found in systematic questionnaires versus spontaneous patient reports. Religious premonitory symptoms or auras were reported by 3.9% of epilepsy patients. Among patients with ictal religious experiences, there is a predominance of patients with right TLE. Postictal and interictal religious experiences occur most often in TLE patients with bilateral seizure foci. Postictal religious experiences occurred in 1.3% of all epilepsy patients and 2.2% of TLE patients. Many of the epilepsy-related religious conversion experiences occurred postictally. Interictal religiosity is more controversial with less consensus among studies. Patients with postictal psychosis may also experience interictal hyper-religiosity, supporting a "pathological" increase in interictal religiosity in some patients. Although psychologic and social factors such as stigma may contribute to religious experiences with epilepsy, a neurologic mechanism most likely plays a large role. The limbic system is also often suggested as the critical site of religious experience due to the association with temporal lobe epilepsy and the emotional nature of the experiences. Neocortical areas also may be involved, suggested by the presence of visual and auditory hallucinations, complex ideation during many religious experiences, and the large expanse of temporal neocortex. In contrast to the role of the temporal lobe in evoking religious experiences, alterations in frontal functions may contribute to increased religious interests as a personality trait. The two main forms of religious experience, the ongoing belief pattern and set of convictions (the religion of the everyday man) versus the ecstatic religious experience, may be predominantly localized to the frontal and temporal regions, respectively, of the right hemisphere.
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PMID:Spirituality and religion in epilepsy. 2545 86

Epilepsy is a common neurological disorder that can be complicated by neurobehavioral comorbidities, which include cognitive impairment, psychiatric disorders, and social problems. Although such comorbidities are traditionally thought to arise predominantly from the effects of recurrent seizures, iatrogenic effects of medications, and adverse social reactions to epilepsy (eg, stigma), there is a growing body of evidence that other factors are involved. These influences include altered neurodevelopment of the brain, cognition, and behaviour; exacerbation of the comorbidities due to decades of medically intractable epilepsy; and possible acceleration of common age-associated changes, leading to uncertain and understudied outcome in old age. This Review summarises, from a lifespan perspective, the evidence for the neurodevelopmental origins of these comorbidities, how they develop over time, and their endpoints, with an emphasis on future clinical and research challenges.
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PMID:The neurobehavioural comorbidities of epilepsy: can a natural history be developed? 1820 13

Epilepsy is one of the most prevalent neurological conditions and it knows no age, racial, social class, geographic, or national boundaries. The impact of epilepsy rests not only on the individual patient, but also on the family and indirectly on the community. The burden of epilepsy may be due to the physical hazards of epilepsy resulting from the unpredictability of seizures; the social exclusion as a result of negative attitudes of others toward people with epilepsy; and the stigma, as children with epilepsy may be banned from school, adults may be barred from marriage, and employment is often denied, even when seizures would not render the work unsuitable or unsafe. Furthermore, epilepsy is a disorder associated with significant psychological consequences, with increased levels of anxiety, depression, and poor self-esteem compared with people without this condition. Here we discuss some of the aspects of the global burden of epilepsy.
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PMID:The global burden and stigma of epilepsy. 2543 47

Stigma is considered to be one of the most important factors that have a negative influence on people with epilepsy (PWE) and their families. It is a global issue commonly encountered in PWE in all cultures. Stigma may have deleterious effects on the patient's life, more than epilepsy itself. It is the duty of all health professionals to try and improve the quality of life of PWE beyond seizures control, and one of the important ways to do so is by fighting stigma. Many different health professionals including physicians, surgeons, social workers, psychologists, psychiatrists, and nurses deal with PWE, and hence stigma in PWE can be encountered and dealt with by many diverse specialties. Unfortunately, this issue is addressed primarily in specialized journals like Epilepsia, Epilepsy and Behavior, Seizure, and Social Science Medicine. Professionals interested mainly in epileptology or social sciences read such journals, and we feel that this issue should be addressed in a journal targeting readers of different specialties and interests.
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PMID:Stigma. An aspect of epilepsy not to be ignored. 1838 86

Spiritual explanations for epilepsy have existed since antiquity and continue to be prevalent in some communities today. While the vast majority of the unfortunate recipients of this understanding are thought to be possessed by evil forces, a few are deemed to be special vessels for divine communication. Here we present the intriguing case of Christina the Astonishing (1150-1224). Christina appears to be unique in the archives of the religious interpretation of epilepsy in that her seizures were understood to represent her willing submission to demonic torments to provide much needed respite for those in purgatory. Thus she provides an ingenious link between the demonic and divine explanations of the disorder. From a medical perspective, the analysis of contemporary accounts of her afflictions provide compelling evidence of status epilepticus, olfactory auras, and probable frontal lobe epilepsy, with frequent secondary generalization. Even more remarkably, the 13th century accounts of Christina's shame and embarrassment and the social stigma associated with her seizures strike a startling contemporary chord.
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PMID:The intriguing case of Christina the Astonishing. 1975 62

The data on sociocultural, demographic, and psychosocial aspects and types of treatment strategies adopted by families of patients with epilepsy in northwestern India were collected by the interview schedule method from 400 patients (200 idiopathic and 200 symptomatic) at the outpatient department of the Neurology and Epilepsy Clinic of the Postgraduate Institute of Medical Education and Research (PGIMER), Chandigarh, India. Epilepsy was classified as idiopathic or symptomatic on the basis of clinical tests (EEG, CT scan, and MRI). It was observed that socioeconomic factors had no bearing on epilepsy in the present sample. Early onset, that is, before 20 years of age, reduced the chances of patients' finding a spouse among those who disclosed the disease information, thereby impacting the nuptial and fertility rates of patients with epilepsy. The present sample of patients was well informed about and sensitized to the efficacy of the modern system of medicine, as 80% of patients sought medical treatment on the very same day as or within a week of onset of seizures. The data were compatible with the framed hypothesis that well-being and safety of the patient would override the stigma burden factor, as 94% of the affected families made no attempt to hide the disease from their neighbors, friends, and colleagues, and teachers of the affected patients. Surprisingly, only 7.5% of the families admitted that they consulted a faith healer. Families did adopt some culturally prevalent methods to control involuntary movements during seizures. It can be concluded that trust in faith healers exists strongly as an undercurrent, but is not overtly admitted by the majority of patients. Some families concurrently visited modern hospitals and occult healers seeking a cure for the disease. The fear of having a child with epilepsy or other abnormalities discouraged married patients from becoming pregnant after developing epilepsy.
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PMID:Psychosocial, demographic, and treatment-seeking strategic behavior, including faith healing practices, among patients with epilepsy in northwest India. 1855 Apr 40

Epilepsy is a common disease found in 2% of the population, affecting people from all ages. Unfortunately, persons with epilepsy have previously been discouraged from participation in physical activity and sports for fear of inducing seizures or increasing seizure frequency. Despite a shift in medical recommendations toward encouraging rather than restricting participation, the stigma remains and persons with epilepsy continue to be less active than the general population. For this purpose, clinical and experimental studies have analysed the effect of physical exercise on epilepsy. Although there are rare cases of exercise-induced seizures, studies have shown that physical activity can decrease seizure frequency, as well as lead to improved cardiovascular and psychological health in people with epilepsy. The majority of physical activities or sports are safe for people with epilepsy to participate in with special attention to adequate seizure control, close monitoring of medications, and preparation of family or trainers. The evidence shows that patients with good seizure control can participate in both contact and non-contact sports without harmfully affecting seizure frequency. This article reviews the risks and benefits of physical activity in people with epilepsy, discusses sports in which persons with epilepsy may participate, and describes the positive effect of physical exercise in experimental models of epilepsy.
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PMID:Physical activity and epilepsy: proven and predicted benefits. 1855 61

Epilepsy-associated stigma is a well-recognized phenomenon that adversely impacts the lives of people with epilepsy (PWE). The burden of stigma follows power differentials, with socially and economically disenfranchised groups being particularly susceptible. To guide instrument development for quantitative studies, we conducted a series of focus group discussions among PWE and found that women with epilepsy experienced especially adverse social and economic problems because of epilepsy-associated stigma. The social burden of the disease largely outweighed the medical burden. Women revealed seizure worries related to accidental and intentional injury and the risk of breaking taboos as well as limitations in role fulfillment and extremes of social rejection by family and community. Our findings have implications for access to care and care delivery for vulnerable populations with epilepsy.
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PMID:Women's experiences living with epilepsy in Zambia. 1868 19

Epilepsy is common and has a variety of causes and associated pathologies. Increased understanding of the pathophysiology underlying the epilepsies and advances in classification, diagnostic imaging and drug treatments have led to a reduction in stigma and growing demand for services to be improved for patients. A number of important reports and guidelines have emerged in the UK in recent years, which are summarised here. Diagnosis, classification, management and models of care are discussed as well as the management of drug intractable seizures, status epilepticus, and approaches to special patient groups: women in the fertile years, the elderly and those with learning difficulties.
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PMID:Epilepsy: a review of reports, guidelines, recommendations and models for the provision of care for patients with epilepsy. 1872 15


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