Predictors of caregivers’ burden of Parkinson’s disease in India: experience of a tertiary care center in India

Vikas Agrawal,¹ Vinay Goyal,² Garima Shukla,² Madhuri Behari<sup>2

1</sup>Department of Neurology, Yashoda Hospital, Secunderabad, Andhra Pradesh, India; ²Department of Neurology, All India Institute of Medical Sciences, New Delhi, India

Introduction: Parkinson’s disease (PD) is a progressive neurodegenerative disorder characterized by increasing dependence on caregivers for activities of daily living that imposes a major burden upon the patients’ caregiver. Caregiver burden (CB) refers to the physical, mental, and socioeconomic problems experienced by the caregivers of chronic patients.
Patients and methods: This is a onetime cross-sectional observational study carried out in the movement disorder clinic of a tertiary referral center in India. Persons with PD were interviewed and information was collected regarding demographic and clinical details, treatment taken, and presence of non-motor features such as dementia, psychosis, depression, etc, on a pre-tested format and their caregivers were interviewed for self-perceived burden using Zerit’s caregivers’ burden inventory.
Results: We interviewed 91 persons with PD (71 [78%] men, 20 [22%] women) with their primary caregivers. The age of the patients ranged from 25 to 75 years (mean 56.66 ± 11.83 years). After regression analysis, depression in patients (beta = 0.352, 95% confidence interval [CI]: 0.275 to 0.790), high UPDRS-motor scores (beta = 0.255, 95% CI: 0.108 to 0.532), and presence of sleep disturbances in the atient (beta = 0.206, 95% CI: 0.817 to 11.823) were associated with increased caregiver burden and the presence of multiple caregivers was associated with lower caregiver burden (beta = −0.311, 95% CI: −10.155 to −3.436).
Conclusion: The total number of caregivers was found to be an important predictor for reducing CB. Multiple caregivers is a phenomenon which has not been studied till now. Other factors which were found to have adverse predictive effect on caregiver burden are presence of depression, high UPDRS-motor scores, and sleep disturbances in patients.

Keywords: caregiver, burden, Parkinson’s disease, predictors