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

Background Aggression is one manifestation of behavioral disturbances in neurodegenerative disease with emerging literature suggesting a high prevalence in Parkinson's disease and related disorders (PDRD). Objectives Our aim was to describe characteristics, associated factors, and consequences of aggression towards caregivers in PDRD. Methods This is a convergent mixed methods study, leveraging data from 296 PDRD patient-caregiver dyads in a clinical trial of palliative care and semi-structured interviews with a subgroup of 14 caregivers who reported aggression. The primary outcome was baseline caregiver-reported aggression. Using multivariate linear regression, baseline dyad characteristics (eg, measures of disease, psychosocial issues, caregiver strain) were examined to identify factors associated with aggression. Thematic analysis of interviews was used to augment these findings. Results Associated variables included disease duration (r = 0.15, P < 0.05), patient grief (r = 0.22, P< 0.001), symptom burden (r = 0.18, r < 0.01), resistance to care (r = 0.40, P < 0.01), caregivers' depression (r = 0.16, P < 0.05), and caregiving burden (r = 0.34, P < 0.001). We identified five themes: (1) Aggressive behaviors range from verbal abuse to threats of physical violence; (2) Caregivers believe that aggressive behaviors result from the difficulty patients experience in coping with disease progression and related losses; (3) Caregivers' stress and mental health are worsened by aggressive behaviors; (4) Aggressive behaviors negatively affect patient-caregiver relationships; (5) Caregivers are ill-prepared to manage aggressive behaviors and cope with the consequences on their own. Conclusions Aggression in PDRD is driven by diverse factors (eg, grief, fluctuations in cognition) with serious consequences for caregivers. Neurologists and movement specialists should consider screening for aggression while prioritizing caregiver education and wellbeing.

Automated summary

This study aimed to describe the characteristics, associated factors, and consequences of aggression towards caregivers in Parkinson's disease and related disorders. The findings revealed that aggression was associated with factors such as disease duration, patient grief, symptom burden, resistance to care, caregivers' depression, and caregiving burden. Caregivers believed that aggression resulted from patients' difficulty in coping with disease progression and related losses, and aggression had negative effects on caregivers' stress and mental health.