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In 2018, it was estimated that around 1 in 10 Australians provided some kind of informal care to a family member, a friend or a neighbour. Most informal carers are not paid and taking on a caring role can be physically and emotionally demanding – particularly when caring for a person living with dementia. The primary objective of this research is to investigate the effects of informal caregiving on health outcomes and mortality using population-wide Australian linked data. The project will leverage integrated data assets such as the Person Level Integrated Data Asset (PLIDA) to investigate methods for accurately identifying and defining periods of informal caregiving using administrative data. This will provide an analytical platform to build an in-depth understanding of the social determinants of caregiving and the impact of caregiving on the carer’s health trajectory and patterns of service use. This will include assessing the immediate and long-lasting health consequences associated with taking on caregiving responsibilities.

Aims

The overarching objective of this project is to develop a comprehensive understanding of Australian Carers and the impact caring can have on an individual’s health. This project aims to: (i) develop novel methods for defining the onset and cessation of caring responsibilities using linked administrative data, (ii) determine the socio-demographic and health factors associated with informal caring, (iii) investigate how informal caring may impact utilisation of preventative health services (eg. vaccination, health assessments, chronic disease management plans), (iv) Assess the short- and long- term health impacts associated with becoming a carer (eg. exploring measures such as longitudinal patterns of GP use, comorbidity indices using PBS data and mortality).  There is also scope to investigate the differential impact of becoming a carer for a person living with dementia compared to caring for people living with other conditions.

Design

This project will use nationally representative integrated data assets such as the Australian Bureau of Statistic’s Person-level Integrated Data Asset (PLIDA). PLIDA incorporates Census data linked to national administrative datasets such as Medicare, Pharmaceutical Benefits Scheme (PBS) and Deaths data. Census data includes a question related to provision of unpaid care to an aged or disabled person. There is also potential to include linkage to the Survey of Disability Ageing and Carers (SDAC) which will enables further in-depth information for a subset of carers. The power of linking the SDAC and Census with other administrative datasets is that health trajectories (eg. Based on Medicare and PBS data) can be examined for a carer – and in many cases the person they care for – across a long time-period. This will provide potential for a range of cross-sectional and longitudinal cohort study designs to examine differences between carers and non-carers or change in patterns of service use pre- and post- caring. It is anticipated that a range of statistical methods will be used including generalised linear models and mixed effects models.