13: Informal carers of people with dementia, including their needs and outcomes
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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.
This activity involves undertaking analysis of the health and welfare outcomes of carers, using newly available data from the SDAC, linked with other data in MADIP (such as Census, Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Scheme (PBS), social security, personal income tax and mortality data).
Outcome: Better data on informal carers of people living with dementia and the health and welfare factors that impact sustaining their carer role
Priority: Medium
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 3 | 1 | 1 | 0 | 5 |
- Alignment: highly important data gap
- Foundational data: method development
- Dependencies: release of the 2022 SDAC
- Priority group reporting: unlikely – based on current dementia reporting from the SDAC
Level of investment: Medium (could require paying for additional questions in current surveys)
Timeframe: Short/Medium term
Responsible stakeholder: AIHW National Centre for Monitoring Dementia (NCMD).
Following the completion of this activity, opportunities for exploring other data sources that capture additional information on carers of people with dementia could be examined. For example, data from Carers Australia, Dementia Australia and the Australian Longitudinal Study on Women’s Health, along with other data sets could be examined.
This activity involves assessing what data on people with dementia are available from providers of carer support services (such as Carers Australia and Carers Gateway) and assess the feasibility and potential mechanisms for incorporating identification of carers of people with dementia into existing data. This would involve extensive consultation with providers to encourage the collection of data on whether the care recipient of the person accessing the service has dementia and investigate opportunities for future data linkage.
Outcome: Identify whether improvements can be made in existing carer support services data and whether this is an appropriate avenue for dementia data improvement
Priority: Low
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 3 | 1 | 0 | 0 | 4 |
- Alignment: highly important data gap (National Dementia Action Plan (NDAP) objective 5)
- Foundational data: method development
- Dependencies: on dementia carer support services including capture of dementia-specific data
- Priority group reporting: unlikely – although may have potential if these demographics are captured at scale
Level of investment: Low
Timeframe: Short term (<2 years)
The subsequent activity to implement any changes to existing data collections would require greater time and investment.
Responsible stakeholder: AIHW NCMD
The activity relates to Activity 2c: Collect data on experiences of people with dementia and their carers and Activity 7g: Collect data on lived experience of dementia diagnosis and management by collecting data on carers’ experiences (as opposed to carers providing proxy responses on behalf of the person with dementia).
This activity may involve additional questions in a lived experience survey (Activity 2c), or if the size of the survey is too large, a separate module specifically for the experience of carers of people with dementia. This collection would aim to provide data on carer health, wellbeing, support services, respite for carers of people with dementia and training. This activity may also provide insights relevant to The workforce treating and caring for people with dementia.
Outcomes: Initial data on the experiences of carers of people living with dementia could identify:
- carer health and wellbeing and how this impacts, and is impacted by, caring for a person with dementia
- carer use of and experience with support service providers for both the person living with dementia and for their own wellbeing, including helplines, counselling and respite services
- experience navigating the health, aged care and disability sectors to access service and supports
- dementia training awareness, access and satisfaction
Priority: High
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 4 | 2 | 1 | 0 | 7 |
- Alignment: multiple highly important data gaps
- Foundational data: for baseline data
- Dependencies: organisations with carers of people with dementia expertise and contacts required
- Priority group reporting: unlikely
Level of investment: Medium–High
The level of investment will depend on data collection methods.
Timeframe: Short term (<2 years)
This activity should be conducted periodically to collect data over time.
Responsible stakeholder: Academic researchers; organisations with survey experience
AIHW (Australian Institute of Health and Welfare) (2023) Dementia in Australia, AIHW, Australian Government, accessed 23 February 2023.
Australian Government (2023) Carer Gateway, accessed 1 March 2023.
Dramé M, Lang P, Jolly D, Narbey D, Mahmoudi R, Lanièce I, Somme D, Gauvain J, Heitz D, Voisin T, de Wazières B, Gonthier R, Ankri J, Saint-Jean O, Jeandel C, Couturier P, Blanchard F and Novella J (2012) ‘Nursing home admission in elderly subjects with dementia: predictive factors and future challenges’, Journal of American Medical Directors Association,13:83.e17–83.e20, doi:10.1016/j.jamda.2011.03.002.
JSCNDIS (Joint Standing Committee On The National Disability Insurance Scheme) (2022) NDIS Workforce Final Report, Commonwealth of Australia, accessed 16 June 2023.
Royal Commission (Royal Commission into Aged Care Quality and Safety) (2021) Final Report: Care, Dignity and Respect: Volume 1 Summary and recommendations, accessed 16 May 2023.