Caregiving Activities and Outcomes Among Family Caregivers of Individuals With and Without Parkinson’s Disease and Lewy Body Dementia in California Caregiver Resource Centers

PURPOSE: To describe characteristics and outcomes of family caregivers for persons with Parkinson’s disease and Lewy body dementia (PD/LBD) and compare them to those of other family caregivers. METHOD: Using a California statewide database, we examined caregiver characteristics and outcomes (strain, loneliness, worse health, and depressive symptoms) and compared them by care recipient diagnosis (PD/LBD, Alzheimer’s disease and related dementias, or other chronic conditions) using descriptive statistics and multivariable logistic regression. RESULTS: PD/LBD caregivers were more likely to identify as female, married, and college-educated; engage in high-intensity caregiving; and report their care recipient wakes them or others up at night. In multivariable models, PD/LBD caregiving was associated with worse health. Among PD/LBD caregivers, performing medical/nursing tasks was associated with higher odds of strain, loneliness, worse health, and depressive symptoms. CONCLUSION: PD/LBD caregivers are a distinct group who often experience high-demand caregiving. Tailored support can help address the unique needs of this population.