Exploring the economic and social effects of care dependence in later life: protocol for the 10/66 research group INDEP study.

Background: In low or middle income countries chronic diseases are rapidly becoming the main cause of disease burden. However, the main focus of health policymakers has been on preventing death from cancer and heart disease, with very little attention to the growing problem of long-term needs for care (dependence). Numbers of dependent older people are set to quadruple by 2050. The economic impact of providing long-term care is likely to be substantial.
Methods/design: The study uses mixed methods and draws on and extends the population-based surveys conducted by the 10/66 Dementia Research Group. We focus on two countries in Latin America (Peru and Mexico), China and Nigeria. The surveys comprised baseline surveys of health, socioeconomic circumstances and care arrangements, repeated three to four years later. We are going back to these households to make a detailed assessment of the overall economic status and the use of health services by all family members. We will compare households where: a) an older resident became dependent between baseline and follow-up (incident care), b) one or more older people were dependent at both time points (chronic care), b) c) no older residents had needs for care (control households) for household income, consumption, healthcare expenditure and economic strain. In each of the four countries we are carrying out six detailed household 'case studies' to explore in more depth the economic impacts of dependence, and the social relations between household members and others in their network.
Discussion: The INDEP study will provide a detailed examination of the economic and social effects of care dependence in low and middle income settings. As the proportion of older people with needs for care rises rapidly in these countries, this neglected policy area is likely to become increasingly salient for families, communities and policymakers alike. Our detailed multilevel plans for dissemination will ensure that the study helps to put this important issue on the agenda for the international and national media, the public and researchers.