Prevalence and Cumulative Incidence of Caregiver-Reported Aggression in Advanced Parkinson Disease and Related Disorders

Abstract

Objective:To estimate the point prevalence and cumulative incidence of caregiver-reported aggressive behaviors amongst people living with advanced Parkinson’s disease and related disorders (PDRD) and secondarily examine variables associated with aggression.Methods:Caregivers from a clinical trial of outpatient palliative care for PDRD were surveyed about patient aggression at baseline and every three 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 timepoints. 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.Results:Of 170 caregivers, 31 (18.2%) reported physical aggression and 18 (10.6%) reported sexual aggression. 12-month cumulative incidence for physical and sexual aggression were 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.Conclusion: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.

Aggression Towards Caregivers in Parkinson's Disease and Related Disorders: A Mixed Methods Study

“…Research suggests aggression in advanced stages of PDRD is common and associated symptom burden. 11 Our study expands on this by pinpointing specific, disease-related factors seen in the context of aggression as a behavioral change in PDRD, such as patients' reactions to functional decline and fluctuations in cognition.…”

“…Aggression, including physical harm, verbal abuse, or unwanted sexual advances towards others, is well‐documented in Alzheimer's disease (AD) but less studied in other neurodegenerative illnesses 8,9 . Emerging research suggests the prevalence of aggression in PDRD is comparable to AD 8–11 . Of 170 patient–caregiver dyads, physical aggression was reported by 18.2% of caregivers 11 .…”

“…8,9 Emerging research suggests the prevalence of aggression in PDRD is comparable to AD. [8][9][10][11] Of 170 patient-caregiver dyads, physical aggression was reported by 18.2% of caregivers. 11 Previous studies utilizing the perspectives of caregivers in AD and non-PDRD dementia have adopted the Antecedent-Behavior-Consequence (ABC) framework for examining problematic behaviors.…”

“…[8][9][10][11] Of 170 patient-caregiver dyads, physical aggression was reported by 18.2% of caregivers. 11 Previous studies utilizing the perspectives of caregivers in AD and non-PDRD dementia have adopted the Antecedent-Behavior-Consequence (ABC) framework for examining problematic behaviors. 12,13 This framework is based on how individuals experience specific situations and has the benefit of leveraging eyewitness (i.e., caregiver) observations to provide a complete description of these behaviors.…”

Caregiver Burden in Partners of Parkinsonian Patients with Deep Brain Stimulation

“…There are even extreme examples where PD patients cannot tolerate being alone at all [ 2 ]. Neuropsychiatric complications can result in physical aggression against the caregiver, also being directly connected with CB in advanced PD patients [ 15 ]. The 25-item self-reported Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue) identified in 74 informal caregivers of advanced-stage PD patients in Hoehn and Yahr stage IV–V the three most rated aspects: “feel of guilt if not there” (71% affirmed), “situation wears me down” (65%) and “always on my mind” (61%) [ 16 ].…”