SAN DIEGO – Adults who are diagnosed with epilepsy at 60 years or older face challenges and perceived negative life changes that are unique from those who are diagnosed at a younger age, especially in terms of managing medications and maintaining independence. The findings come from a qualitative study intended to describe problems and life changes faced by patients who receive an epilepsy diagnosis in later life.
Wendy Miller, Ph.D.
"People aged 60 and older are at the highest risk for new-onset epilepsy," Wendy R. Miller, Ph.D., said in an interview during a poster session at the annual meeting of the American Epilepsy Society. "We’ve only recognized this trend in the last 10-15 years. No one has really studied this population to find out how they cope with epilepsy self-management compared with younger people."
For the study, which was carried out in 2011, Dr. Miller and her colleague, Janice Buelow, Ph.D., interviewed 20 patients who had a diagnosis of epilepsy at or after age 60. Eligibility criteria included having had a diagnosis of epilepsy for at least 6 months, being on at least one antiepileptic medication, and being community dwelling. During face-to-face semi-structured interviews, the researchers asked participants open-ended questions about problems and perceived changes they had experienced since being diagnosed with epilepsy.
Of the 20 patients, 12 were women, mean age was 70 years, and they were a mean of 4.1 years removed from their initial epilepsy diagnosis, according to Dr. Miller of the Indiana University School of Nursing, Indianapolis. Key problem areas reported by the study participants included maintaining independence (40% expressed concerns about transportation while 80% worried about their ability to continue life normally) and medications (95% were concerned about side effects of antiepileptic medications, 60% worried about remembering to take them, and 55% worried about their ability to afford them). "Many of the people interviewed have tight financial concerns," Dr. Miller said. "There were also polypharmacy issues, where people elected not to take their antiepilepsy medication because they perceived that it was not as important as their heart medication."
The majority of negative changes reported by the study participants were related to lifestyle, including impact on daily function (100%), physical and emotional symptoms (100%), impact on the number of commitments made (80%), relationships with family and friends (60%), and their ability to fulfill age-appropriate roles and responsibilities (60%).
While not reported in the abstract, another common concern expressed by study participants was related to the process of being diagnosed with epilepsy. "Many were initially misdiagnosed," Dr. Miller said. "It was really difficult for them to get an accurate diagnosis. I didn’t anticipate that. When I sat down with them for interviews that’s what they wanted to talk about, and that wasn’t even one of my questions. They would go from doctor to doctor, or the doctor would say that the seizures are due to a condition they already have. So they would go long periods of time without being treated."
The top two positive changes related to their epilepsy diagnosis as reported by study participants were perspective (25%) and impact on spirituality (25%). Dr. Miller said that she plans to use the study findings to develop an assessment tool to guide the development and implementation of tailored epilepsy self-management interventions for older adults. "This is a very unique group," Dr. Miller said. "They have unique needs, and they’re a growing segment of the population, so we have to devise interventions that are specific for them."
The study was funded by the National Institutes of Health. Dr. Miller said that she had no relevant financial conflicts to disclose.