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

Abstract

BackgroundIn 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/designThe 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.DiscussionThe 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.Electronic supplementary materialThe online version of this article (doi:10.1186/2193-1801-3-379) contains supplementary material, which is available to authorized users.

“When someone becomes old then every part of the body too becomes old”: Experiences of living with dementia in Kintampo, rural Ghana

“…We used an adapted version of the 10/66 DRG INDEP study topic guide as a starting point for the 149 development of our topic guide. The aim of INDEP was to study the economic impact and needs for 150 care among older people in four low and middle income countries (Mayston et al, 2014). Given our 151 focus on the lived experience of dementia, causality, care arrangements etc.…”

Health and economic correlates of autonomy among older people in Peru, Mexico and China: The 10/66 INDEP study

“…The INDEP study 12 conducted in China, Peru, Mexico and Nigeria, was designed to assess the effects of care dependence among older adult residents on household economic functioning. For the INDEP quantitative survey (2012), conducted in China, Peru, and Mexico, households were selected from previous waves of the 10/66 Dementia Research Groups catchment area surveys, based upon the needs for care of older residents.…”

“…We also linked INDEP interviews with the clinical information gathered at the last (incidence phase) 10/66 survey conducted two to three years previously. Our open access protocol paper provides a full account of the interviews administered in the INDEP study 12 . Here we summarise those elements used for analyses presented in this paper.…”

“…A wide range of potential determinants of autonomy were considered, and assessed in detail using cross-culturally validated measures 16,21,22,24 . In particular, household and individual incomes were ascertained with rigour, enquiring after all sources of income for all household members 12 . Analyses of associations with autonomy were based on a priori hypotheses, and stratified by site before meta-analytical synthesis.…”

Caring for older dependent people in low and middle-income countries: the effect of age on mental health in caregivers

“…Household size refers to number of household members of the older people household. It is often associated with considerable mental health due to long term care for older people in the household [29].…”