Cost and burden of informal caregiving of dependent older people in a rural Indian community

BACKGROUND Lack of state supported care services begets the informal caregiving by family members as the mainstay of care provided to the dependent older people in many Low and Middle Income Countries (LMICs), including India. Little is known about the time spent on caregiving, its cost and the burden experienced by these informal caregivers. We aimed to estimate the costs of informal caregiving and to evaluate the nature as well as correlates of caregivers' burden in a rural Indian community. METHODS We assessed 1000 people aged above 65 years, among whom 85 were dependent. We assessed their socioeconomic profiles, disability, health status and health expenditures. Their caregivers' socio-demographic profiles, mental health, and the time spent on caregiving were assessed using standard instruments. Caregiver's burden was evaluated using Zarit Burden Scale. We valued the annual informal caregiving costs using proxy good method. We employed appropriate non-parametric multivariate statistics to evaluate the correlates of caregivers' burden. RESULTS Average time spent on informal caregiving was 38.6 (95% CI 35.3-41.9) hours/week. Estimated annual cost of informal caregiving using proxy good method was 119,210 US$ in this rural community. Mean total score of Zarit burden scale, measuring caregivers' burden, was 17.9 (95% CI 15.6-20.2). Prevalence of depression among the caregivers was 10.6% (95% CI 4.1-17.1%). Cerebrovascular disease, Parkinson's disease, higher disability, insomnia and incontinence of the dependent older people as well as the time spent on helping Activities of Daily Living and on supervision increased caregiver's burden significantly. CONCLUSIONS Cost and burden of informal caregiving are high in this rural Indian community. Many correlates of burden, experienced by caregivers, are modifiable. We discuss potential strategies to reduce this burden in LMICs. Need for support to informal caregivers and for management of dependent older people with chronic disabling diseases by multidisciplinary community teams are highlighted.