“OFF” periods—re-emergence or worsening of motor and nonmotor symptoms—intensify the burden of Parkinson’s disease (PD) for patients and care partners, impacting work, finances, and daily function. They occur in ~40% of patients after 4 to 6 years of therapy and ~90% after 10 years. A mixed-methods cross-sectional study examined 145 care partners of patients with PD psychosis (hallucinations/delusions; mean age 66.4 years; 75.9% women) to characterize responsibilities, supports, and peer advice.
Most respondents (79.3%) provided daily care across physical, emotional, medical, and financial domains. Only 11% learned about PD psychosis from a physician; more relied on personal research (21.4%). Reported barriers to discussing psychosis in clinic included not wanting to talk in front of the patient (14.4%), fear of embarrassment (17.2%), and competing priorities (18.6%). Caregiving was linked to exhaustion (73.1%) and depression/sadness (53.8%). Care partners wanted practical management tips (68.3%), clear explanations (46.9%), and treatment options (38.6%). Peer advice most often urged contacting the neurologist (30.4%), staying calm (27.2%), supporting (23.2%), and reassuring the patient (15.2%). Few advocated medications, favoring nonpharmacologic strategies and more guidance from the medical team.
Reference: Gavidia M. Challenges, Advice for Caregivers of Patients With Parkinson Disease Experiencing Psychosis. AJMC. Published February 26, 2021. Accessed September 12, 2025. https://www.ajmc.com/view/challenges-advice-for-caregivers-of-patients-with-parkinson-disease-experiencing-psychosis
