Lewy Body Dementia Caregiver Study Project Description 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. Information For Potential Participants This study depends on the generous help of individuals who are currently: An unpaid caregiver living in the same household with a family member who is experiencing Lewy Body Dementia The primary person who cares for that individual CURRENTLY ENROLLING HERE This study consists of: Eligibility Questions (approximately 10 minutes) After you complete the form from this link, we will call you to tell you more about the study, confirm that you are eligible, and invite you to participate. Baseline Interview (approximately 60 to 90 minutes) Caregivers will receive a thorough explanation of the study procedures and provide informed consent if they choose to participate A trained interviewer who is sensitive to the issues caregivers face will conduct the survey This interview will occur at a time of your convenience and will accommodate work schedules or other demands. You can break it up into more than one session. Daily Life Assessment Over 4 Days Caregiver completes a 5-minute brief survey every 3 hours (5 X a day) on a study-provided smart phone Caregiver and the person experiencing Lewy Body Dementia both wear a Fitbit to assess heart rate, physical activity, and sleep. The smart phone records sound in the environment for 30 seconds every 6 minutes. Participants have the opportunity to set up a schedule for when they don’t wish to be recorded (such as during work hours) and turn it off at any time for privacy. You may opt out of this part of the study and we do not include this part of the study in some parts of the country. You are free to choose to participate in different aspects of the 4 day study or not. All Participation Occurs by Phone or Virtually Benefits of taking part in this study You will help improve an understanding of daily caregiving, stress, and sleep patterns among caregivers for family members experiencing Lewy Body Dementia. This information is vital to develop interventions that can improvide the well-being of caregivers and the people experiencing Lewy Body Dementia whom they support. Participation in the study is voluntary The information collected is kept confidential and you can stop participation at any time. You will receive compensation for taking part in the study Caregivers will receive $75 after completing the baseline Interview. Caregivers will receive $25 for a brief walk through to go over how to complete the brief surveys Caregivers will receive $25 each day for the 4 days of data collection ($100 total). Thus, upon successful completion of the study, caregivers will receive up to $200 The person experiencing Lewy Body Dementia will receive $10 per day for wearing a Fitbit if they choose to do so ($40 total) Participants also receive prints out of their activitiy levels and sleep patterns recorded by the Fitbit. Any identifying information of participants will be removed from all reported results. The identities of study participants will never be disclosed. Participants are free to skip any parts of the study they do not wish to participate in and to withdraw participation at any time. Project Information This study is funded by the National Institute on Aging. The project director is Karen Fingerman, PhD Interested caregivers can sign up to determine their eligibility to participate and learn more using this link Please contact us at caregivers@austin.utexas.edu or call 512-471-0618 for queries about participation
