Lewy Body Dementia Caregiver Study

THIS STUDY IS NOW CLOSED TO ENROLLMENT. WE THANK THE MANY CAREGIVERS AND PERSONS LIVING WITH LBD WHO PARTICIPATED

Lewy Body Dementia (LBD) is the second most common cause of dementia after Alzheimer’s Disease. This disease is a family affair, affecting not only the person experiencing the disease but also the loved ones who care for them. Rapid changes and cognitive difficulties, motor declines, lack of attention, frustration, hallucinations, sleep disturbances, and restlessness come and go, making it difficult to know how to interact with the person experiencing LBD at any given moment. Despite the daunting demands that caregivers for individuals experiencing Lewy body dementia face, these caregivers often receive less help than caregivers for other forms of dementia. Understanding how and when these symptoms fluctuate throughout the day and night could help caregivers respond effectively and minimize stress.

Our research team at the University of Texas at Austin have received funding from the National Institutes of Health to document LBD caregivers’ daily experiences, with the goal of developing more effective interventions that address challenges at the moments when they arise

This is the first study to track caregivers and family members experiencing LBD throughout the day and night in real-time. We will identify how caregivers respond to family members experiencing LBD, and how stresses and rewards fluctuate and accumulate throughout the day and at night. We track sleep patterns and sleep disturbances overnight. The study will identify factors that trigger symptoms and factors that contribute to caregivers’ stress as they occur in real-life situations.  This is the first study to gather information about caregivers’ experiences throughout the day, enabling us to design effective interventions that will help caregivers at the moments when they need it.

 

NO LONGER ENROLLING