Objective: To examine changes in caregivers and predictors of increased caregiver strain in Parkinson’s disease (PD).

Background: Caregiver strain can increase with advanced PD. In a study using the National Parkinson Foundation Quality Improvement Initiative (NPF-QII) baseline data, the best predictor of increased caregiver strain was the PDQ-39. However, few studies have observed changes over time in caregiver strain or specific areas of strain. Longitudinal assessments of PD caregivers are critical for identifying their needs across the entire disease timeline.

Methods: Baseline, year 1, and year 2 follow-up NPF-QII registry data for PD patients with Multidimensional Caregiver Strain Inventory (MCSI) total and domain (physical, social, financial, time, interpersonal, family conflict) scores were analyzed. Baseline characteristics between patients with and without MCSI data were compared. Changes in total and domain MCSI scores were compared from baseline to year 1 and year 2. Regression models were used to examine predictors of change in MCSI variables over time with baseline demographics, PD duration, H&Y stage, comorbidities, mental health referrals, cognitive functions, Timed-Up-And-Go (TUG), and PDQ-39 as independent variables.

Results: The dataset included 8,078 patients with records at their first 3 visits, of whom 2,730 had MCSI data (n=1,574 for all 3 visits). Those with MCSI data were more likely to be male, live at home, have longer PD duration, and more advanced PD. Regular caregivers changed in 14.8% from baseline to year 1 and 16.0% to year 2, with caregiver changes seen with older, female patients, more advanced PD and higher MCSI scores. MCSI scores increased at year 1 and 2 visits (p<0.0001), with increases in all domains except for financial strain. Age was the most common significant predictor of change in MCSI; a one-year increase in age in PD patients was associated with an average of 0.11 points more increase in MCSI total from baseline to year 1 and 0.15 points more increase from baseline to year 2 (p’s<0.0001). PDQ-39 was not a significant predictor of caregiver strain change over time.

Conclusions: Caregiver strain increases over time for those caring for PD patients in general and in specific domains. Interventions to ease strain should address caring for older PD patients as well as physical, social, time, interpersonal, and family conflict issues.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/longitudinal-assessment-of-caregiver-strain-in-parkinsons-disease/