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

Date Published: May 31, 2019

Publisher: Public Library of Science

Author(s): Geum-Bong Lee, Hyunhee Woo, Su-Yoon Lee, Sang-Myung Cheon, Jae Woo Kim, Oscar Arias-Carrion.


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.

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.

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.

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.

Partial Text

Parkinson’s disease (PD) is a neurodegenerative disease causing the loss of dopaminergic neurons in the substantia nigra, which chronically progresses [1]. Early PD patients undergoing medical treatment do not have significant difficulty in daily living, but patients with advanced PD experience difficulties in basic daily living activities due to various motor and non-motor symptoms, and the disability in daily living continually increases with progression of the disease [1,2]. Specific motor symptoms of PD, including bradykinesia, tremor, rigidity, and gait disturbance, are readily apparent to patients and caregivers, but their interests in and recognition of non-motor symptoms, including gastrointestinal symptoms, cognitive/emotional disorder, autonomic disturbance, and pain are lower [3]. In particular, the non-motor symptoms of PD have been identified as factors that increase burden of care and lower the quality of life more than the motor symptoms [4,5]. This finding has also been confirmed by a report showing that the non-motor symptoms may be the key factors that reduce the quality of life, even in early stages of the disease [6]. Therefore, proper understanding and recognition of the disease by PD patients and caregivers may be improved by providing more knowledge about the disease itself, and lack of understanding of the disease may have a negative effect on the care of PD patients [7,8].

The subjects of the present study had been diagnosed with PD without a cognitive disorder (Korean Mini-mental status examination (K-MMSE) > 24), and were stably undergoing management through an outpatient clinic. When patients visited the hospital with their primary caregiver, the structured interview was conducted after receiving a written informed consent. The burden of care of the primary caregivers was evaluated using the Caregiver Burden Inventory (CBI) [14]. The CBI is comprised of five sub-dimensions of time-dependence, developmental, physical, social and emotional burden. A higher CBI score means a higher caregiver burden. In the present study, the CBI questionnaire was modified by adding questions about economic burden. The questions for economic burden were consisted of three questions, but those were not validated prior to applicate in this study. To identify the factors related to caregiver burden, the demographical and clinical characteristics of the patients were investigated, in addition to the relationship between the patient and the primary caregiver, monthly income of the caregiver, time of care, and cost of care. The level of understanding the disease was evaluated by a test prepared by three experts on the physiopathology/diagnosis, symptoms, and treatment/progress. The test consisted of 20 multiple-choice questions.

The present study was conducted to identify factors associated with the burden of care of the PD caregivers and verify the effect of understanding the disease. The key results of the present study are described below.