Epilepsy Self-Management in Older Adults: A Qualitative Study

Indiana University-Purdue University Indianapolis (IUPUI)Epilepsy is the most common chronic neurological condition in the United States, and it is incurable. Those who suffer from it must engage in both collaborative and independent management of their condition for the remainder of their lives. The treatment and care of those with epilepsy must therefore include not only medical interventions, which alone cannot cure the disorder or prevent the disability associated with it, but must also prepare persons for and facilitate their independent management—self-management—of the disorder. Self-management is a process that affects important outcomes including resource utilization, mortality, and quality of life. In the United States, those age 60 years and older have the highest incidence of new-onset epilepsy. Despite the high incidence of epilepsy in this population, coupled with the knowledge that self-management affects important outcomes, a thorough search of the literature suggests that self-management experiences of older adults diagnosed with epilepsy late in life have not been investigated. The purpose of the study was to examine, using a qualitative descriptive design, the self-management experiences of older adults diagnosed with epilepsy at or after age 60. Semi-structured interviews were used to generate data. A total of 20 older adults participated. Major findings indicate that older adults in the sample, and particularly the women, experienced a delay in receiving an epilepsy diagnosis. These older adults experienced multiple problems and life changes since diagnosis—some of which are unique to this population and many of which are amenable to intervention. These older adults devise and execute a variety of management strategies, within a system, that are classified as disease/treatment-focused and problem/life changes-focused. These strategies further are categorized as proactive or reactive, with proactive strategies being pre-planned and effective, and reactive strategies being unplanned and less effective. Knowledge generated from this study reveals the problems experienced by older adults with epilepsy, as well as their management needs. These findings will inform future studies, the aim of which will be to investigate more thoroughly these problems and needs and, ultimately, to inform interventions aimed at resolving this population’s problems and concerns while also improving outcomes