Caregivers' Knowledge and Timing of Palliative Care in Parkinson's Disease: A Survey Study

BACKGROUND: Palliative care is underused in Parkinson's disease (PD) and often initiated only in the final days of life. Caregivers shape health care decisions as cognitive impairment advances, yet how PD caregivers specifically compare in perceived versus actual knowledge and what they believe about the timing of initiation remain incompletely characterized. OBJECTIVES: The aim of the study was to compare perceived and actual palliative care knowledge among PD caregivers, characterize beliefs about optimal timing of initiation, and identify associated factors. METHODS: A cross-sectional survey of informal caregivers was conducted at the Movement Disorders Clinic, Baycrest Health Sciences Centre, Toronto. Caregivers with health care training were excluded. Perceived knowledge was rated on a six-point scale; actual knowledge was assessed with true/false items benchmarked against the World Health Organization (WHO) palliative care definition. Sex differences were tested with Wilcoxon rank-sum and Fisher's exact tests (P < 0.05). RESULTS: Fifty-two caregivers participated (mean age 54 years; 50% female; 84.6% adult children). Ninety-two percent rated their knowledge as good or excellent, yet 88.5% endorsed the belief that palliative care is primarily for dying patients, the only item a majority answered incorrectly. Accuracy on remaining items ranged from 75% to 100%. Among caregivers whose relative had received palliative care, 73.1% recalled initiation at Hoehn and Yahr stage 5, although 50% preferred earlier initiation. Agreement with early integration exceeded 82% across all 20 attitude items. No sex differences observed. CONCLUSIONS: PD caregivers combine high self-rated knowledge with a singular misconception equating palliative care with dying, alongside a preference for earlier integration. The pattern indicates a system-level referral gap rather than caregiver resistance and supports clinic-embedded education and proactive, stage-decoupled referral.