Caregiver burden for older adults with serious mental illness and factors influencing it: A community-based exploratory survey

ABSTRACT Background: Caregivers of older adults with serious mental illness (OASMI) often experience significant burden. Determining this burden and identifying its associated factors can aid in designing better interventions. However, studies evaluating the burden on informal caregivers of OASMI in India are limited, and community-based research being especially scarce. Aim: Our aim was to determine the subjective burden on the primary informal caregivers of OASMI and identify the associated factors. Methods: We conducted a cross-sectional survey among 563 caregivers of community-dwelling OASMI identified through multistage cluster sampling across three districts in Kerala. The caregiver burden was assessed using the 20-item WHO Burden Assessment Schedule, and its association with various factors was analyzed. Results: Nearly all caregivers (97.9%) experienced some caregiver burden, with 26.3% falling into the ‘high-burden’ category. Caregiver burden increased with advancing age of caregivers, and spouses reported significantly higher burden than other caregivers ( P < 0.001). The OASMI factors such as being male, married, and living in poor housing conditions were associated with greater caregiver burden. The caregiver factors associated with increased burden were being male, having lower levels of education, and the responsibility of domestic budget handling. The most striking finding was that the caregivers of currently symptomatic OASMI reported an eightfold higher burden compared to those caring for currently asymptomatic OASMI. As regular treatment is known to reduce symptoms, our finding highlights the indirect role of treatment in reducing caregiver burden through symptom management. Conclusion: Given that OASMI symptoms significantly increase caregiver burden, prioritizing strategies for symptomatic improvement should be a key focus of intervention programs aimed at supporting OASMI and their caregivers.