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.

This research is being done to help us better understand the risk factors and protective factors for cognitive decline in people who are at increased risk for dementia. The goal of the study is to establish a data and biorepository for people at increased risk for dementia.

Eligible patients for the study, in addition to routine clinic visits, may undergo a series of questionnaires and blood testing.

The project focuses on gathering initial evidence about the opportunities and challenges of designing tailored financial technology (fintech) to support the care partners of persons living with Alzheimer’s disease (AD) and AD-related dementia (ADRD) to help them with collaborative and longitudinal financial management. To accomplish this goal, we will conduct 20 min survey study and optional follow-up interview activities with care partners.

We are recruiting care partners of individuals living with Alzheimer's Disease and Alzheimer's Disease Related Dementias. There will be two phases in the study. The first phase is a 20-min survey that will ask participants about their financial management behavior. The second phase is optional, and it is a 40-min follow-up interview with similar questions.

For the first phase, each participant may choose to enter a drawing for a chance to win a $50 Amazon eGift card. For the second phase, each participant will receive a $30 Amazon eGift card for their time.