Knowledge, Responsibilities, and Peer Advice From Care Partners of Patients With Parkinson Disease Psychosis

Sneha Mantri; Briana Edison; Lamees Alzyoud; Steven M Albert; Margaret Daeschler; Catherine Kopil; Connie Marras; Lana M Chahine

doi:10.3389/fneur.2021.633645

Knowledge, Responsibilities, and Peer Advice From Care Partners of Patients With Parkinson Disease Psychosis

Front Neurol. 2021 Feb 1:12:633645. doi: 10.3389/fneur.2021.633645. eCollection 2021.

Authors

Sneha Mantri¹, Briana Edison², Lamees Alzyoud², Steven M Albert³, Margaret Daeschler⁴, Catherine Kopil⁴, Connie Marras⁵, Lana M Chahine²

Affiliations

¹ Department of Neurology, Duke University, Durham, NC, United States.
² Department of Neurology, University of Pittsburgh, Pittsburgh, PA, United States.
³ Department of Behavioral and Community Sciences, University of Pittsburgh, Pittsburgh, PA, United States.
⁴ The Michael J Fox Foundation for Parkinson's Research, New York, NY, United States.
⁵ The Edmond J Safra Program in Parkinson's Disease, Toronto Western Hospital, University of Toronto, Toronto, ON, Canada.

Abstract

Introduction: Care partners (CPs) of individuals with Parkinson disease psychosis (PDP) experience increased strain and rely on informal support networks. The objective of this study was to characterize CP responsibilities, sources of support, and peer advice. Methods: This was a mixed-methods cross-sectional study. The sample was recruited from the online Fox Insight study cohort. CPs who indicated their care recipient suffered hallucinations and/or delusions were administered a questionnaire regarding their caregiving experience to person with PDP. A free-text question asked CPs to give advice to a hypothetical peer CP. Responses to multiple-choice questions were tabulated; responses to the free-text question were grouped into advice categories. Results: 145 CP of individuals with PDP were included in this analysis, mean age (standard deviation, SD) 66.4 (9.4) years; 110 (75.9%) were women. Most (115, 79.3%) provided caregiving on a daily basis, with a range of responsibilities. Only 16 (11%) learned about PDP from a physician; communication challenges included perceived embarrassment or having to prioritize other issues in a limited appointment time. The most common peer advice was to alert the care recipient's neurologist (n = 38, 30.4%); only 8 (6.4%) suggested medication changes. Conclusion: CPs face challenges with clinician communication and learn about psychosis from a variety of informal sources. Few CPs advocate for medications to control PDP, instead preferring non-pharmacological management strategies. Peer advice favored alerting the care recipient's physician, suggesting that CPs do desire more information from the medical team.

Keywords: care partners; mixed-methods analyses; parkinson disease; peer advice; psychosis experiences.