Comparison of LBD research priorities by caregiver characteristics

AbstractBackgroundCaregivers of individuals with Lewy body dementia (LBD) experience high levels of caregiver burden while having a pivotal role in clinical and research decision‐making. Despite the importance of the caregivers in LBD, little is known about their research priorities. Targeting these priorities may help research engagement and more meaningful study aims.MethodA web‐based survey of current and former caregivers of people with LBD investigated research priorities through forced ranking and exploration of experiences in LBD. Importance of research topics were queried and further analyzed descriptively based on age, gender, relationship type (spouse, sibling, adult child), and location type (large city, suburb, small town, rural). Race and ethnicity were not included due to small sample size.ResultBetween 4/7/2021‐7/1/2021, 984 responses were recorded: 550 identified as current caregivers and 280 as former caregivers. Younger caregivers (<60 years) were more likely to express interest in research participation, as were those residing in large cities. No difference in research interest was seen between caregiver gender or relationship type. The top research priority for all caregivers was development of disease modifying therapy. More women were interested in LBD‐specific healthcare education. Both women and adult children caregivers prioritized identifying individuals at risk for LBD. Spouses prioritized understanding disease course and progression, whereas siblings prioritized pathophysiological changes and alternative medicine approaches. Individuals from large cities and suburbs prioritized medication development and those from rural areas and small cities valued improving methods to diagnose LBD.ConclusionThis study emphasizes varying research priorities based on age, gender, relationship, and area of residence of LBD caregivers. Recognition of the heterogeneity of LBD caregivers allows for personalized outreach and support, as well as tailored research projects and goals. Identifying the unique priorities of those personally affected by LBD can guide research development towards maximally impactful outcomes.