Abstract
BackgroundLack 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.MethodsWe 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.ResultsAverage 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.ConclusionsCost 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.
Highlights
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
We aimed to estimate the cost of informal caregiving and to investigate the factors associated with burden among caregivers of dependent older people in a rural Indian community
Female gender (n = 56; OR = 1.7; 95% CI 1.1-2.7; p = 0.03), lacking formal education (n = 75; OR = 4.7; 95% CI 2.3-9.4; p < 0.001), past occupation as manual laborers (n = 78; OR = 2.5; 95% CI 1.1-5.6; p = 0.02), cerebrovascular disease (n = 8; OR = 31.6; 95% CI 8.2-121.5; p < 0.001), dementia (n = 4; OR = 11.2; 95% CI 2.7-45.8; p < 0.001), falls (n = 7; OR = 20.4; 95% CI 5.8-71.3; p p < 0.001) and incontinence (n = 13; OR = 54.9; 95% CI 15.3-197.0; p < 0.001) were significantly associated with functional dependence, while comparing the dependent older people (n = 85) with the independent older people (n = 915)
Summary
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. LMICs rely on their family members due to the absence of social security systems and of any formal care support. Their informal caregivers continue to provide care without any financial or physical assistance from the state. Informal caregivers in high-income countries suffer high physical, psychological and financial burden [5,6,7] Their quality of life and work participation deteriorate [8,9]. These issues are more relevant to LMICs, pertinent research in LMICs remain sparse
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