Reducing caregiver burden in advanced Parkinson's disease through targeted training: A longitudinal study with...

Family caregivers of people with advanced Parkinson's disease (PD) experience substantial psychological, physical, and economic strain. The optimal intensity ("dose") of structured caregiver training to lessen this burden is unknown and rarely quantified.

We prospectively followed 1757 family caregivers (April 2021-February 2025) at a single tertiary PD center. Caregivers received a predefined seven-module (∼30-h) curriculum (PD management, mobility/fall prevention, behavior/communication, caregiver self-care, system navigation, emergency response). Training exposure was summarized on a 0-100 index (dose, timing, engagement, boosters) and analyzed in tertiles. Mixed-effects models related exposure to Zarit Burden Interview (ZBI) change over 18 months (24-month extension) and to depressive symptoms, healthcare use, and quality of life.

Among 1757 caregivers supporting 1757 patients with advanced PD, higher training exposure was associated with greater 18-month ZBI improvement (-4.4 vs -2.5 points for high vs low exposure; p < 0.001). Spline analyses indicated the steepest associated benefit at ∼40-55 exposure units and minimal added gain beyond ∼75 units; within this range a ≥7-point ZBI reduction yielded an NNT-equivalent of 2.4 under a causal assumption. Higher exposure was also associated with fewer emergency visits, lower depressive symptoms, and better quality of life. Gains were smaller in older, less educated, and multiply disadvantaged caregivers, and were largely maintained at 24 months (92.4 % retention).

Higher caregiver training exposure was associated with lower burden, better mood, and less healthcare use in advanced PD. These single-center observational data do not prove causality or generalizability; multi-site randomized or stepped-wedge trials are needed.