13: Informal carers of people with dementia, including their needs and outcomes

Carers, both formal (paid) and informal (such as family members and friends), play a vital role in the lives of people with dementia, particularly when the condition has progressed beyond the early stages. They help with the activities of daily living which include personal care, transport, housework and other activities, as well as managing behavioural problems and providing supervision. For people with dementia, access to carers can improve their quality of life and may help to delay or avoid entry into residential aged care services (Dramé et al. 2012).

Information on carers of people with dementia is important for policy development and service planning because dementia not only affects individuals with the condition but also has a substantial impact on their families and carer/s as many of these informal carers help with activities of daily living for people with dementia. Therefore, it is important to measure the number of informal carers for people with dementia; the characteristics of these carers; the type of assistance they provide; the impact of their caring role; and areas of unmet need. This can inform the types of programs needed to support informal carers, and how to complement this with formal carers amid a shortage of disability and aged care workers (JSCNDIS 2022; Royal Commission 2021).

Addressing the data gap and improving data

The Australian Bureau of Statistics’ (ABS) Survey of Disability, Ageing and Carers (SDAC) provides national data on people with dementia and their informal carers. It provides information on primary carers living in the same household as their care recipient on factors such as time spent in the caring role, unmet needs, and impacts of the caring role on the carer’s physical and emotional wellbeing, relationships, employment and financial situation (AIHW 2023). However, the survey is thought to underestimate the number of people with dementia, particularly people with mild dementia living in the community. Data are also restricted to co-resident carers (AIHW 2023). Availability of the SDAC linked with other data in the ABS Multi-Agency Data Integration Project (MADIP) is a promising data development. Further, the addition of new data on dementia in the 2022 SDAC (to be released in 2024) may provide greater capture of people living with dementia and their carers.

Carers can access information, resources and support services through the Carer Gateway, state and territory-based nongovernment organisations and Dementia Australia (Australian Government 2023). Carers Australia conducted a national Carer Wellbeing Survey in 2021 and 2022, which provides information on the health, wellbeing and service use of carers, including carers of people with dementia. Carers NSW has also conducted a biennial Carer Survey since 2002, with the survey conducted nationally in 2020 and 2022. The survey captures information on topics including carers’ service use, unmet needs, health, wellbeing and employment impacts, and includes data on carers of people with dementia. Rather than being representative of the Australian population, carers were specifically recruited for these surveys.

More comprehensive nationally representative data on informal carers would provide greater insight on how many Australians provide care for people with dementia, important support mechanisms, unmet needs, and how the prevalence of carers and their needs may change in the future. This will improve the ability to plan and make informed decisions on the magnitude and type of support services needed for carers of people with dementia in the future (AIHW 2023).

Proposed data improvement activities

There are 5 main activities proposed to improve data on informal carers of people with dementia, including their needs and outcomes. These include activities to:

  • assess health and welfare of carers of people with dementia using linked data
  • explore collection of data on whether care recipient has dementia in existing carer support services data (such as data from Carers Australia, Carers Gateway)
  • collect data on the experiences of people with dementia and their carers (Activity 2c detailed under Dementia awareness and stigma)
  • collect data on experiences of people with dementia and their carers among priority groups (Activity 2d detailed under Dementia awareness and stigma)
  • incorporate dementia data in enduring linked data assets to meet the needs of dementia monitoring (Activity 3a detailed under Dementia prevalence and incidence).

Each activity description provides information on the intended outcome, priority rating, level of investment required, timeframe for completion of the activity and who is responsible for undertaking the activity.