Challenges, Advice for Caregivers of Patients With Parkinson Disease Experiencing Psychosis

Among caregivers of patients with Parkinson disease experiencing psychosis, only 11% learned about the symptom from a physician, with communication challenges attributed to having to prioritize other issues in a limited appointment time.

In assessing the impact of Parkinson disease (PD), caregivers and patients both take on the role of managing the progressive neurodegenerative disorder. Notably, this burden becomes more intensified amid the reappearance or worsening of motor and nonmotor symptoms, known as “OFF” periods, which are shown to occur in 40% of patients after 4 to 6 years of treatment and in 90% after 10 years.

As indicated in prior studies, OFF periods have a significant impact on the ability for patients with PD to work and on caregivers who have to dedicate increased time to care for patients. In fact, caregivers of patients experiencing OFF periods were associated with a greater loss of earnings, opportunities, or ability to maintain employment compared with caregivers for patients without OFF periods.

Seeking to gauge challenges for care partners of patients with PD experiencing psychosis, the authors of a study published in Frontiers in Neurology explored the responsibilities of these caregivers, as well as sources of support and peer advice.

As they note, care partners experience worsened mental and physical health and rely on informal networks in managing psychosis, which occurs in up to 80% of patients with advanced PD.

“Individuals who provide regular care for patients with PD psychosis….provide large amounts of uncompensated care and experience higher levels of psychosocial strain,” the study authors highlighted.

Conducting a mixed-methods cross-sectional study, they recruited 145 care partners of patients with PD psychosis, and were suffering hallucinations and/or delusions, from the online Fox Insight study cohort (mean age [SD], 66.4 [9.4] years; 75.9% women). Participants were administered a multiple-choice questionnaire regarding their caregiving experience, which included:

  • Medications taken by patient, if any
  • What prompted the health care provider to prescribe the medication to treat psychosis symptoms
  • How the care partner first learned about PD psychosis
  • Information that would be most helpful to have when the care recipient first started experiencing psychosis symptoms

Participants additionally answered a free-text question in which they were asked to give advice to a hypothetical peer care partner.

Among the respondents, 79.3% provided caregiving on a daily basis, cited as a combination of physical, emotional, medical, and financial responsibilities. In learning about PD psychosis, just 11% of care partners reported having been educated by a physician, with more respondents (21.4%) learning from personal research.

Several communication challenges were cited, including not wanting to speak about psychosis symptoms in front of a patient (14.4%), not wanting to embarrass the patient (17.2%), and feeling there were more important symptoms to discuss during appointments (18.6%). Care partners additionally noted that their caregiving role contributed to feelings of exhaustion (73.1%) and depression/sadness (53.8%).

For information that would prove helpful, care partners cited a need for more practical advice on how to handle PD psychosis (68.3%), explanations of PD psychosis (46.9%), and options for treatment (38.6%). Moreover, care partners’ most common piece of advice to fellow care partners was to alert the care recipient’s neurologist (30.4%), followed by remaining calm (27.2%), supporting the patient (23.2%), and reassuring the patient (15.2%).

“Few care partners advocate for medications to control PD psychosis, instead preferring nonpharmacological management strategies,” concluded study authors. “Peer advice favored alerting the care recipient’s physician, suggesting that care partners do desire more information from the medical team.”


Mantri S, Edison B, Alzyoud L, et al. Knowledge, responsibilities, and peer advice from care partners of patients with parkinson disease psychosis. Front Neurol. Published online February 1, 2021. doi:10.3389/fneur.2021.633645