The burden of care and the understanding of disease in Parkinson’s disease

Background and objective: Education of disease plays an important role in management of Parkinson's disease (PD). However, little is known about the link between the understanding of disease and the burden of care. This study was carried out to find the correlation between the burden of care and the understanding of disease in caregivers for PD patients. Methods: Non-demented patients with PD and their caregivers participated in structured interviews. Understanding of patients and caregivers was evaluated through newly-devised questions. The caregiver burden inventory was used to assess the burden of care. Results: A total of 142 pairs of patients and their caregivers were recruited. A correlation analysis showed that the burden of care was positively associated with low understanding of the disease by the caregiver. Daily care time and female patients were revealed to be independently associated with the burden of care through a multivariate analysis. Further analyses were performed in the caregiver group according to relationship with patients. The spouse group showed an increased burden of care and poor understanding compared to the offspring group. A multivariate analysis revealed that daily care time and understanding were independent predictors for the burden of care in the spouse group. There was no significant association in the offspring group. Conclusion: The burden of care was associated with higher daily caregiving time and female gender of the patient, and was significantly increased in the spouse of the patient. In the spouse group, better understanding of the caregiver correlated with less burden of care.