Objective: To identify predictors of accelerated caregiver burden in patient-caregiver dyads of people with Parkinson’s disease and related disorders (PDRD).

Background: PDRD are characterized by progressive motor, cognitive, and neuropsychiatric disturbances. Care needs of patients are frequently met by informal caregivers who provide vital support and whose presence translates to higher quality of life and less existential distress for patients. Caregiver strain can negatively impact caregiver well-being, in turn affecting patients’ quality of life and overall disease management. However, little is known about factors that predict longitudinal worsening of caregiver burden.

Method: We conducted a secondary analysis of data collected from PDRD patient-caregiver dyads as part of a multi-site community-based pragmatic stepped-wedge trial. Linear mixed regression models were used to investigate variables associated with rates of change in Zarit Burden Inventory (ZBI) over 12 months, adjusting for treatment group, disease severity, baseline ZBI, and primary diagnosis.

Results: Data were collected from 300 participant dyads (76% of caregivers were women, with a mean age of 67.6 (SD=11.3) years). Treatment group was not correlated with either ZBI score at 12 months or the change in ZBI score from baseline to 12 months. Caregiver characteristics associated with accelerated burden over 12 months included younger age (ß=1.14, 95%CI 2.14, 0.14, p<0.05), higher scores for depression (ß=2.29, 95%CI 1.31, 3.26, p<0.001) and anxiety (ß=2.31, 95%CI 1.31, 3.26, p<0.001), and lower perceived ability to provide caregiving (ß=1.24, 95%CI 0.76, 1.73, p<0.001). Patient characteristics predictive of accelerated caregiver burden included cognitive impairment (ß=-2.08, 95%CI -3.72, 0.44, p<0.05) and falls in the past 3 months (ß=3.41, 95%CI 1.06, 5.77, p<0.01), especially where falls warranted medical treatment (ß=5.43, 2.05, 8.82, p<0.01).

Conclusion: Caregivers’ mental health and perceived competency along with patients’ motor deterioration and cognitive dysfunction were drivers of accelerated caregiver burden in our study population. These potentially modifiable factors are promising intervention targets for future clinical trials to decrease burden and increase support for caregivers of patients with PDRD.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/drivers-of-burden-over-time-in-caregivers-of-patients-with-parkinsons-disease-and-related-disorders-findings-from-a-community-based-clinical-trial-of-outpatient-palliative-care/