September 30, 2025
Lewy body dementia (LBD) includes Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB). Lewy Body dementia it is the second most common form of progressive dementia after Alzheimer’s disease. It happens when abnormal protein deposits—called Lewy bodies—build up in the brain and disrupt how brain cells work together. LBD is unique among dementias in how widespread symptoms can be. LBD affects not just memory and thinking, but also movement, mood, sleep, and behavior, presenting ongoing challenges throughout the day and the night.
What We Need to Know about Care for People Experiencing LBD
All forms of dementia may involve good days and bad days, but LBD is unique in how rapidly things can change throughout the day. LBD also has more sleep disruptions than other forms of dementia, making nights demanding as well as days. But we know surprisingly little about patterns of symptoms throughout the day and night. Understanding how and when symptoms change would could help caregivers effectively respond to those symptoms, and minimize stress. Caregivers for LBD need interventions in the moments when problems are occurring.
Researchers at the University of Texas at Austin have received funding from the National Institutes of Health/National Institute on Aging to study LBD caregivers’ daily experiences. By learning more about daily experiences, researchers may be able to develop more effective interventions to address challenges at the time they arise.
What is being done?
Dr. Karen Fingerman at the University of Texas at Austin, an expert in understanding older adults’ family lives, and how spouses, parents, children, and other relatives support one another in daily life, is leading a study called the Lewy Body Dementia Caregiver Study. This study examines challenges that occur in everyday life for LBD caregivers in real world settings.
Importantly, all participation is by phone and virtual and the study team is looking for volunteers from all around the US.
Caregivers first complete a phone interview (the baseline interview) where they are asked to share their overall experiences helping their family member with LBD.
Then, caregivers wear FitBits that track their heart rate, sleep cycles, and physical activity such as sitting or lying down, or being mildly or very active. The researchers also provide caregivers with a smartphone that is easy to use: It has only the apps needed to answer brief surveys about symptoms, caregiving, and stress throughout the day for 4 days. The research team helps walk the caregiver through the process of using the app. If the person experiencing LBD is also willing to participate, they wear a FitBit as well. This allows us to compare the stress that both people experience and their patterns of sleep.
Participants receive compensation for their participation in each component of the study in the form of gift cards of their choice or a check. The research team keeps in touch with the participants throughout the study. Caregivers who have participated report feeling supported throughout the daily data collection.
What has the study team learned so far?
The researchers have already learned several important things about caregiving for LBD. For example, caregivers sometimes experience feelings of isolation because the family member experiencing LBD does not wish to discuss their experiences with the disease. So far in the study, approximately half of the family members with LBD were willing to talk with their caregiver about the disease, but close to half were not at all, a little or only somewhat likely to talk about it.
Healthcare professionals also seem to lack information about LBD. Over 40% of caregivers in the study so far reported receiving little or poor quality information about the disease, and over 40% also reported that they had to provide health care professionals with information about LBD. The plus side of that is that 60% of caregivers were receiving adequate information from their health care providers.
Some participants also reported rewards from caregiving: 49% of participants agreed that caregiving made them feel more useful, and 73% of participants agreed that caregiving made them feel needed.
The research team has also found large swings in the frequency of agitation. On average family members with LBD were agitated 6 times per day, but the number of agitation events ranged from “not at all” on some days, to one participant who experienced 24 episodes of agitation in a single day.
How can I get involved?
To learn more about this study, you can call the study team at 512-471-0618.
You can also visit the LBDA page for this study or the study team’s webpage.
Or if you have questions about the study or wish to enroll, you can also email caregivers@austin.utexas.edu.
For more information on clinical trials and other studies that might be right for you, LBDA encourages you to visit our clinical trials page. To stay up-to-date on new studies when they launch, you can also sign up for LBDA’s Lewy Trial Tracker.