June 3, 2025
Lewy Body dementia (LBD) includes Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB). As the disease progresses, people with LBD need assistance that is not readily available. This often leads to family members stepping in and becoming primary caregivers around the clock for their loved ones with LBD. Research in both Alzheimer’s Disease and LBD has shown that being a family caregiver can lead to significant strain. Researchers at Rush University Medical Center in Chicago, with funding from the National Institutes of Health/National Institute on Aging, are currently testing an education-focused, peer-mentoring intervention that you may be eligible to join if you are an LBD caregiver. All participation is virtual, and the study team is looking for volunteers from all around the US.
Why study LBD caregivers?
LBD is the second most common form of neurodegenerative dementia, affecting 1.4 million Americans. Because LBD progresses across multiple motor, cognitive and psychiatric domains, it’s often unpredictable and leads to higher caregiver strain and comorbidities in comparison to other diseases, such as Alzheimer’s. While the situation can feel dire, research in other conditions has shown the benefits of peer mentoring as an effective way to support family caregivers. Peer mentoring involves pairing a more experienced caregiver with someone who is newer to the caring role for a person with the same condition.
What is being done?
At Rush University, movement disorders neurologist Dr. Jori Fleisher and her team previously found that Parkinson’s Disease and LBD-specific peer mentoring interventions had beneficial effects on caregivers’ knowledge and attitudes—two key contributors to caregiver strain. When mentoring was paired with an LBD-specific curriculum, caregiver confidence, attitudes, depression and LBD knowledge also improved. These findings give us hope that help is out there, in the wisdom of current and former caregivers. Partnering with former caregivers, the curriculum has been designed and revised by dozens of LBD caregivers. The study team then expanded the resources included and made the intervention virtual for the PERSEVERE study, so volunteers can participate from anywhere.
The PERSEVERE study is a fully virtual study designed to test whether providing LBD-specific resources and peer mentoring support improves not only the outcomes for the family caregiver, but whether the knowledge, skills, and confidence gained by the caregivers translates into improved outcomes for their person living with LBD. PERSEVERE covers topics from motor to cognitive symptoms and self-care to care planning. All participants receive 12 weeks of LBD specific resources and are asked to complete surveys for a 9-month period. Participants whose person living with LBD has had cognitive changes for more than three years, or has passed, will be trained to serve as peer mentors. Participants whose person living with LBD has had cognitive changes for less than three years will be randomized 1:1 to an education or mentee group. Mentees and mentors will be asked to call each other once a week during the 12-week curriculum.
During this study, participants will answer questions about their LBD knowledge, strain, quality of life, support system, and the quality of life of their person living with LBD. This data will help gain insight into the challenges caregivers are facing and what can be done to help.
What has the study team learned so far?
The PERSEVERE study is still enrolling participants. So far, baseline data from 196 participants, whose PLBD had cognitive symptoms for less than three years at the time of enrollment, have been analyzed. (Baseline data means data from the first virtual study visit.)
From that group, caregiver strain was found to be correlated with loneliness, caregiver sleep efficiency and duration, and overall sleep quality. Overall sleep quality was also correlated with dementia severity and dependency when completing activities of daily living. Caregiver loneliness was elevated and was associated with younger age and female gender. Loneliness was also inversely associated with social support and positively associated with depression. In other words, the younger a caregiver is, the fewer social supports available, or the more depressive symptoms they have, the more likely they are to be lonely. Additionally, female caregivers were lonelier than their male counterparts.
What do the findings this mean?
Initial data shows many factors are associated with the strain of LBD caregivers. Of those factors, caregiver sleep quality is associated with conditions of the person living with LBD, and loneliness was associated with caregiver demographics, social support and depression. These findings are consistent with the notion that peer mentoring interventions may improve caregiver strain. Once the first cohort of participants has finished the study, data can be analyzed to determine if the education or mentoring support had an impact on these baseline findings. Data will need to be collected from many more participants to verify the impact of the LBD education and peer mentoring support provided as part of the PERSEVERE study.
How can I get involved?
To learn more about the PERSEVERE Study, view the LBDA PERSEVERE page. Alternatively, you can visit https://redcap.link/PERSEVERE1 to watch a video by Dr. Fleisher, testimonials from former participants, and complete a survey to see if you may be eligible. If you have specific questions about the study, please email persevere@rush.edu.
Reference
Fleisher JE, Suresh M, Levin ME, Hess SP, Akram F, Dodson D, Tosin M, Stebbins GT, Woo K, Ouyang B, Chodosh J. 2023. Learning to PERSEVERE: A pilot study of peer mentor support and caregiver education in Lewy body dementia. Parkinsonism Relat Disord. doi: 10.1016/j.parkreldis.2023.105492.