Contributory Factors to Caregiver Burden in Parkinson Disease

BACKGROUND: In Parkinson disease (PD), patients often require burdensome assistance, delivered by informal caregivers (eg, spouse). DESIGN: Prospective questionnaire and clinical-based investigation. OBJECTIVES: To investigate both patient- and caregiver-derived factors contributing to caregiver burden (CB). METHODS: We assessed, in 59 patient-caregiver pairs, various motor, nonmotor, and cognitive symptoms as well as quality of life by standardized tests and questionnaires. Repercussions on the caregiver were evaluated by Zarit Burden Interview, Health-related Quality of Life (HrQoL), Generalized Anxiety Disorder Assessment-7, Patient Health Questionnaire-9, and the Montreal Cognitive Assessment. Transcultural comparison was ensured by validation of the tests in the 3 used languages. RESULTS: Sleep problems and autonomic dysfunction of the patient strongly impact CB (r = -0.414 to -0.335, P < .01) and HrQoL of the caregiver (r = -0.335 to -0.314, P < .05). Higher CB is less strongly linked with patient's motor impairment (P < .05). Large time investment, including nocturnal care in 41% of the caregivers, strongly influences CB (P < .001). The mood, but not the cognitive status, of the caregiver is directly linked to CB and HrQoL of the caregiver (P < .01). CONCLUSION: In PD, the CB is primarily dependent on patients' nonmotor symptoms. Patient care requires considerable time investment and can trigger depression in the caregiver.