Burden and depression in the caregivers of blind patients in India

Purpose: Several studies have examined the rates of depression in caregivers of patients with debilitating neurologic diseases. This study describes the degree of burden and the prevalence of depression among individuals caring for legally blind patients. To the best of our knowledge, no prior studies in the ophthalmic literature have reported this relationship.

Design: Clinic-based, cross-sectional study.

Participants: We included 522 individuals in Rampur, India, providing care to their close family relatives who were legally blind. Visual acuities varied from 20/200 in the best eye, to no light perception (NLP) in each eye.

Methods: Several surveys were completed by the caregivers of patients whose sole impairment was visual, allowing us to quantitatively and selectively assess burden and depression among caregivers of blind patients.

Main outcome measures: The Burden Index of Caregivers (BIC) was used to measure care burden and the Center for Epidemiologic Studies Depression scale was applied to determine depression.

Results: Caregivers of patients with NLP experience higher burden than caregivers of patients with lesser degrees of blindness. Daily hours spent on close supervision and the intensity of care-giving were the definitive factors linked to high BIC scores (P<0.01). The prevalence of caregiver depression increased with degree of visual impairment from 16% in the 20/200 group to 48% in the NLP cohort (P<0.01). Independently related variables for depression in caregivers were daily hours required for close supervision of the patient, intensity of care-giving, low household income, and the caregiver being the parent of a blind adult child (P<0.01).

Conclusions: Severity of blindness in patients directly correlated with burden in caregivers. More severe forms of blindness meant patients require more help with their activities of daily living and additional hours of close supervision per day, both of which increase care burden. The same 2 factors also increase risk of caregiver depression along with low household income and the caregiver being the parent of a blind adult child. Awareness of the extent of burden and depression among caregivers of blind individuals is required by vision health personnel to identify at risk caregivers and implement effective interventions and support strategies.