Care networks in later life: A comparative study of five communities in Indonesia using ethnography and surveys

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As people age, they sometimes need care or practical help with daily activities. Usually family members provide most of this care. But families are becoming smaller. Adult children move away. Women go out to work and care for young children. Not every older person has children. These trends are making it more difficult for families to care. Additionally older people's care needs are becoming more complex. They may suffer from several health problems and disabilities, such as dementia, or need care over long periods. Unless different carers cooperate, older people may receive inadequate care and carers become overburdened. This raises the central question for this research: How can acceptable care for older people in rapidly changing societies be developed without creating unsustainable or unfair burdens on those providing the care? In order to answer this, we first need detailed answers to these questions: What care needs do older people have? Who provides care and why? What does acceptable care look like, and how are people who need care perceived? Who doesn't get appropriate care and why?This project addresses these questions for Indonesia, the fourth largest population in the world. It is a rapidly changing, multi-ethnic country. Some areas have nuclear families, as in the UK; others have complex families, as in India or China. Many families are poor, and there are large wealth differences. These aspects make it an interesting country for comparative research from which wider lessons about care provision in later life can be drawn. Our approach is to first do ethnographic research in five different communities. This involves a researcher living among the study population, observing daily life and repeatedly interviewing older people who need care and their carers. We chose the communities because they are already being studied for another project, funded by Australia, to which we are linked. This means the researchers know the communities, and we can share data. Once we know what kind of care needs older people have, who provides care, what acceptable care looks like and what the burdens of care are, we will design questions for a household survey done in the same communities. This will allow us to analyse how common certain arrangements or problems are, and whether there are differences between men and women, rich and poor, and the different communities. By including questions used in national Indonesian surveys, we can also compare our findings to those surveys.Three ideas are central to our study and capture where our main theoretical contributions lie. First, we think that care is a cultural practice. By this we mean that culture shapes preferences for care providers, what counts as acceptable care, and what being dependent does to a person's social value. This is why we use ethnography, which uncovers local values and preferences, and why we compare ethnic groups within Indonesia. Second, we recognise that care is often provided by a mix of family members, neighbours, health care providers and volunteers, and care needs evolve. This is why we collect data on people's complete care networks over time. We also seek people's life histories to analyse how care in later life is related to an older person's past contributions. Third, we understand that older people differ in terms of gender, wealth, family networks etc. This is why we collect information on people's economic, demographic and social status and compare care among sub-groups.Our research is timely because the World Health Organisation (2016) has called on developing countries to implement sustainable long-term care systems. The Indonesian government wants to develop a long-term care system, and district governments want to meet local care needs. For this, they need to know who is currently providing care, what works well, how familial care can be supported, and where gaps in care provision occur. We aim to provide that knowledge.