To estimate the point prevalence and cumulative incidence of caregiver-reported aggressive behaviors among people living with advanced Parkinson disease and related disorders (PDRDs) and secondarily examine variables associated with aggression.
Caregivers from a clinical trial of outpatient palliative care for PDRD were surveyed about patient aggression at baseline and every 3 months over 12 months. Baseline responses were used for point prevalence. Cumulative incidence was calculated using responses from caregivers with no reported baseline aggression and available data at all other time points. Measures of disease severity, quality of life, mood, and caregiver burden were included in correlation and relative risk models, adjusting for age, sex, and diagnosis.
Of 170 caregivers, 31 (18.2%) reported physical aggression, and 18 (10.6%) reported sexual aggression. Twelve-month cumulative incidence for physical and sexual aggression was 21.1% (23/109) and 16.0% (19/119), respectively. Physical aggression cumulative incidence was associated with patient depression (r = 0.37), patient-perceived quality of life (r = –0.26), caregiver burden (r = 0.26), caregiver-perceived patient quality of life (r = –0.26), and caregiver anxiety (r = 0.20). Age, sex, cognitive impairment, and dementia were not associated with aggression. No variables were associated with cumulative sexual aggression.
There was a high prevalence and incidence of aggression in our PDRD cohort. This is an understudied issue in PDRD, and our findings highlight the need for increased awareness among neurologists. Providers should consider assessing for aggression when discussing neuropsychiatric symptoms or screening for caregiver burden. Future research should examine the relationship between aggression and patient and caregiver health outcomes.
Trial Registration Information
Clinical trial registration number: NCT02533921.