Objective: To evaluate medication administration burden among Lewy Body Dementia (LBD) family caregivers and associations with caregiver and care recipient characteristics.
Background: Family caregivers of individuals with LBD frequently struggle with their loved one’s motor, cognitive, neuropsychiatric, and autonomic symptoms. Caregivers are often responsible for identifying and communicating new symptoms to healthcare providers, administering carefully-timed and complex medication regimens, and gradual and acute changes in an illness with hallmark motor and cognitive fluctuations. Medication management is associated with high caregiver strain and burden in other neurologic conditions, though remains unexplored in LBD. This cross-sectional analysis drawn from an ongoing national LBD caregiver study (PERSEVERE, R01AG079128) examines associations with medication administration burden.
Method: We analyzed baseline data from LBD family caregivers enrolled in PERSEVERE. Participants completed the 24-item Family Caregiver Medication Administration Hassles Scale, where higher scores indicate worse hassle, yielding a total score and four subscales: Information Seeking/Sharing, Safety Issues, Scheduling Logistics, and Polypharmacy. We calculated Spearman’s r between total and subscale scores, respectively, with caregiver demographics and care recipient characteristics, including LBD duration, dementia severity (Quick Dementia Rating Scale), and dependency for activities of daily living (ADLs).
Results: Among 196 LBD family caregivers, LBD severity (r 0.31, p <0.01) and ADL dependency (r 0.25, p <0.01) correlated with total medication administration burden. LBD severity was also associated with hassles in information seeking/sharing (r 0.25), scheduling logistics (r 0.31), and safety issues (r 0.27, p <0.01 for all domains), and polypharmacy (0.15, p = 0.04). ADL dependency correlated with hassles due to information seeking/sharing (r 0.24, p <0.01), scheduling logistics (r 0.19, p = 0.01), safety issues (r 0.17, p = 0.01), and polypharmacy (r 0.15, p = 0.04).
Conclusion: LBD family caregivers face significant medication administration challenges which correlate with advancing cognitive and motor impairments. Given the complex regimens, potential interactions, and consequences of medication errors in this population, identifying those at risk and designing interventions to mitigate medication hassles could improve both caregiver strain and LBD outcomes.
To cite this abstract in AMA style:
W. Ayele, J. Hemm, S. Mitchell Chen, E. Stevens, A. Taylor, K. Fargo, D. Mariani, S. Seshadri, C. Bentley, T. Manak, A. Miller, C. Pensyl, C. Pierce, M. Voss, B. Ouyang, J. Chodosh, J. Fleisher. Medication Administration Burden in Lewy Body Dementia Caregivers [abstract]. Mov Disord. 2025; 40 (suppl 1). https://www.mdsabstracts.org/abstract/medication-administration-burden-in-lewy-body-dementia-caregivers/. Accessed November 20, 2025.« Back to 2025 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/medication-administration-burden-in-lewy-body-dementia-caregivers/