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Abstract Reasoning, Decision Making and Social Judgment as Markers of Frontotemporal Lobar Degeneration (FTLD) in Midlife in Juvenile Myoclonic Epilepsy (JME)
This study will look for emerging patterns of Frontotemporal Lobar Degeneration (FTLD), an early onset dementia, in Juvenile Myoclonic Epilepsy (JME). JME is a type of epilepsy that usually begins in adolescence and is known to be associated with disturbances of higher-level reasoning, mood and personality. JME patients are often managed by family physicians, rather than epilepsy specialists; with little known about aging with JME. We think that JME patients will demonstrate a pattern of executive dysfunction that is consistent with consensus criteria for FTLD, characterized by declines in abstract reasoning, judgment, and verbal problem solving, as well as behavior. We also think that there will be an inverse relationship between apathy and conscientiousness. We plan to obtain this information by formal cognitive testing of non-demented JME patients over a period of 2 years, at 6-month intervals, to look for progression of symptoms. Loved ones/caregivers will complete informant questionnaires about patient's mood and personality at the beginning of the study and at 6 month intervals throughout the duration of the 24 month study. We will also include loved one/caregiver cognitive testing at the beginning of the study to obtain healthy information for comparison to patient's findings. Our objectives are to characterize the executive functioning profiles of JME in midlife, taking into account cognition, mood, personality, nutritional status and lifestyle. The information obtained may contribute to better care of JME patients prior to midlife and throughout the course of aging.
Visit 1 for both patient and healthy caregiver participants will involve administration of the JME Virtual Visit Protocol via PSH Zoom. Participants will have completed their REDCap questionnaires prior to the visit to the research coordinator, who will be conducting the assessment. Visit 2-5 for patient participants will involve administration of the JME Virtual Visit Protocol via PSH Zoom. JME participation consists of 5 virtual visits with the study’s research coordinator, lasting approximately two hours each, for completion of standardized tests of problem-solving, thinking, and concentration, as defined above. Caregiver healthy control participation consists of 1 virtual visit with the study’s research coordinator, lasting approximately two hours, for completion of standardized tests of problem-solving, thinking, and concentration, as defined above. Remaining participation involves completion of objective inventories providing a caregiver perspective of the patient participant’s mood and behavior at 6-month intervals, within the 24 month time frame of the study.
Primary language English
age 45 - 65
Mainstream Education
Loved one or caregiver to complete questionnaires
Cardiac conditions affecting cognition
Other medical conditions affecting cognition,e.g.,hypoglycemia
Hospitalization for major depressive disorder within the past year
No available loved one or caregiver to complete questionnaires