Dementia in Australia

A key gap in dementia monitoring is the lack of Australian-specific high quality data to estimate the number of people with dementia in Australia. Improving dementia data would greatly improve our ability to effectively monitor Australians with dementia, and plan and deliver services to support their needs.

Some promising developments for dementia data include:

• projects (NHMRC 2019) linking the available administrative and clinical data sets to improve dementia prevalence estimates and other key statistics. Bringing together data from multiple sources on the same individual, also known as data linkage or data integration, increases the likelihood of that individual being identified with dementia and therefore increases the accuracy of estimates. Our ability to link data and undertake the necessary analyses is improving rapidly and this approach may produce more robust dementia prevalence estimates in the near future
• the development of a dementia clinical quality registry that directly collects data on the diagnosis and management of dementia by the Australia Dementia Network (NHMRC 2019)
• the Registry of Senior Australians (ROSA) has compiled historical data on Australians who were assessed for and/or received government-subsidised aged care from 1997 to 2020; since 2018, ROSA has also sought to enrol all South Australians who have an aged care eligibility assessment in a prospective state-wide registry (ROSA 2019)
• the increasing availability of electronic health records that contain clinical diagnosis information, including the nationwide implementation of My Health Record. For example, the NPS MedicineInsight program, which uses nationwide clinical data from 569 general practice information systems, has been used to estimate dementia prevalence among patients visiting participating general practitioners (GPs) and to study differences in patterns of service use by dementia status (NPS MedicineWise 2020)
• information on the occurrence of dementia as a health condition was collected for the first time in the 2021 Census.

The AIHW will undertake work to address other data gaps and inform dementia specific policy needs through its newly developed National Centre for Monitoring Dementia.

References

NHMRC (National Health and Medical Research Council) (2019) Boosting dementia research initiative, NHMRC, Australian Government, accessed 9 October 2019.

NPS MedicineWise (2020) General Practice Insights report July 2018 – June 2019, NPS MedicineWise, accessed 11 February 2020.

ROSA (The Registry of Senior Australians) (2019) ROSA funded projects, ROSA, accessed 11 February 2020.

The ABS collected information on the occurrence of dementia as a health condition in the 2021 Census. We are optimistic that this information will make an important contribution to improving dementia prevalence estimates as well as enabling other relevant studies of dementia to be undertaken. However, as this is the first time this question has been asked in the Census it will be important to evaluate how it has performed and whether the data generally align with what is already known. As a first step, the AIHW will assess the 2021 Census dementia data and develop an approach to incorporating these data into models of dementia prevalence as well as evaluating their potential for dementia monitoring activities.

This is an important topic to understand and monitor for ensuring high-quality dementia care. The 2020 Aged Care Workforce Census suggests that in the last 12 months, staff dementia training was delivered by:

• 82% of residential aged care facilities
• 55% of Home Care Package providers
• 55% of Commonwealth Home Support Programme providers (Department of Health 2021).

However, it is not known what proportion of the aged care workforce, and what proportion of current healthcare professionals have up-to-date knowledge and training on dementia.  

In response to the Royal Commission into Aged Care Safety and Quality the Australian Government is directing $49.4 million in increased funding towards training to improve aged care workers’ knowledge and practice in dementia and palliative care. Dementia training will target leaders in personal care, general practitioners (GPs) and GP registrars and improve access to dementia training in regional and rural areas. Find out more on the Department of Health website.

A number of organisations focus on dementia education, including Dementia Australia, Dementia Training Australia, Dementia Support Australia, as well as universities such as the Wicking Dementia Research and Education Centre.

The Dementia in Australia report presents dementia data by state/territory, remoteness, and socioeconomic areas for dementia prevalence, mortality, hospitalisations, burden of disease and use of residential aged care services. Due to data limitations, we were unable to present finer geographic breakdowns, such as by Primary Health Networks or Local Government Areas.

As at September 2021, the AIHW is undertaking two projects focused on documenting variations in these statistics by fine geographic levels. One project aims to explore access to GP services relative to need for people with dementia in Australia and the other will examine the use of health and aged care services, as well as patterns of death, for people with dementia in Australia.

The Dementia in priority groups section of the online report presents data and information on dementia among a number of population groups, including:

• Aboriginal and Torres Strait Islander people
• People from culturally and linguistically diverse backgrounds
• People with intellectual disabilities—including statistics on dementia among people with Down syndrome
• Veterans
• The LGBTIQ+ community

Our ability to report on dementia in priority groups is limited by data availability in national datasets. Where there is limited national data we have provided information from Australian specific studies, as well as identified resources and support services for people with dementia who belong to these groups.

It is hoped that improvements to dementia data over time will greatly improve our ability to monitor dementia in priority groups. 

While age is the greatest risk factor for dementia, there are a number of lifestyle or ‘modifiable’ risk factors that increase your risk of developing dementia, such as low levels of education in early life, obesity, hypertension in midlife, tobacco smoking, excessive alcohol consumption, air pollution, physical inactivity and social isolation.

Unless there is a medical breakthrough for dementia prevention, the best way to prevent dementia is to minimise these modifiable risks factors. This includes maintaining a healthy weight, undertaking regular physical activity, eating a health balanced diet, quitting smoking, reducing alcohol consumption, maintaining an active social life and keeping mentally stimulated. More information on established risk factors for dementia is in the Dementia in Australia report.

Preventive health is a key priority for the Australian Government. The Government is developing a National Preventive Health Strategy, which will outline the overarching, long-term approach to prevention in Australia over the next 10 years. The Strategy recognises that there are a number of significant factors that play an integral role in determining societal health and prevalence of disease. It focuses on the wider determinants of health, such as risk and protective factors for dementia. Find out more about preventative health on the Department of Health’s website.

The Government is also investing in dementia research with the establishment in December 2018 of the $185 million Dementia, Ageing and Aged Care Research Mission (the Mission), funded to June 2029 through the Medical Research Future Fund. Research into interventions that prevent or delay the onset on dementia symptoms has been recognised as a priority area.

Age is the greatest risk factor for dementia but there are a number of lifestyle factors known to increase your risk of developing dementia (such as physical inactivity, social isolation, low education levels, and number of chronic diseases). More information on established risk factors for dementia is in the Dementia in Australia report.

Statistics on dementia associated with higher domestic use of pesticides are not included in the Dementia in Australia report. However, some international studies suggest that there may be an association between exposure to neurotoxic pesticides and dementia.

The AIHW National Centre for Monitoring Dementia will continue to monitor the existing known risk factors for dementia, and will consider relevant studies and data as they become available.

Many people with dementia have a number of comorbidities that present additional challenges to living well with dementia. It is imperative that we understand how comorbidities affect the physical and mental wellbeing of people with dementia, as well as their care needs. The Dementia in Australia report presents information on:

• how the average number of health conditions and types of co-existing health conditions differ among people with dementia by place of residence
• Common co-existing conditions among people with dementia living in residential aged care (including Aboriginal and Torres Strait Islander people) and among culturally and linguistically diverse populations
• common principal diagnoses among people with dementia admitted to hospital
• patterns of specialist service consultations among people living with dementia. 

Dental and oral health issues are common among people with dementia. Dementia Australia provides information on possible causes of dental problems and advice for carers on maintaining the best possible dental health on their website.

Due to data limitations, we are currently unable to present data on people with dementia and dental/ oral health issues.

Although there are no national-level estimates of the number of Indigenous Australians with dementia, studies examining different communities of Indigenous Australians have consistently found that dementia prevalence rates are about 3–5 times as high as rates for Australia overall.

Dementia Australia is working with numerous Indigenous-specific services to ensure that Aboriginal and Torres Strait Islander people can receive support from trusted organisations. There are resources available on Dementia Australia’s website at www.dementia.org.au/resources/for-aboriginal-and-torres-strait-islander-communities.

In response to the Royal Commission into Aged Care Quality and Safety, the Australian Government is investing more than $572.5 million to ensure Aboriginal and Torres Strait Islander peoples receive quality and culturally safe aged care services, can access advice to make informed decisions about their care, and are treated with dignity and respect. 

We know that senior Australians want to remain independent and in control, living at home and connected to their community. To increase care and support for senior Australians and their carers in the community, including those living with dementia, the Australian Government is providing $7.5 billion to enable:

• 80,000 more Home Care Packages
• increased support for informal and family carers
• support for senior Australians to find the aged care services they need
• increased Aged Care Quality and Safety Commission checks
• pricing transparency to ensure value for money.

The Government will also develop a new support at home program.

The My Aged Care website and contact centre will continue to be a key entry point and source of information for services and supports. People navigating the aged care system will also gain help from face-to-face aged care specialists and Community Care Finders.

Dementia Australia runs a number of post-diagnostic support programs, as well as a range of Living with Dementia programs that are designed to help a person with dementia, as well as their families and carers, remain independent for as long as possible.

There is a growing body of evidence demonstrating the effectiveness of allied health, enablement, and assistive technologies. The Commonwealth Home Support Programme (CHSP) offers dementia-specific services and a range of rehabilitation-like services for CHSP clients with dementia who require additional services to remain independent in their homes.

While the Dementia in Australia report acknowledges the challenges associated with caring for someone with dementia including burnout, there is a lack of national data to report on carers of people with dementia once the caring role ends. Understanding the wellbeing of carers over time, including after their role ends, is an important facet of providing appropriate support to carers and warrants further investigation.

The National Dementia Helpline is available to families and carers at any stage of the dementia trajectory. Information for carers when the person they care for transitions to residential aged care is available on the Dementia Australia website. 

Support is also available after the death of a loved one with dementia.

The Dementia in Australia report shows that up to 472,000 Australians are living with dementia, and this number is projected to more than double by 2058. Two-thirds of people with dementia live in the community. While there are no specific benchmarks for service delivery and planning for people with dementia in the community, the Australian Government is providing significant additional funding for care and services for people living with dementia and their carers.

In addition to the immediate additional investment to provide more home based care for senior Australians, the Australian Government will increase support provided for informal and family carers of senior Australians, including those caring for people living with dementia. The Government will also invest $229.4 million to improve quality of life and care for people living with dementia, while improving the aged care sector’s focus on this core part of aged care.

This includes significant additional funding to expand the National Dementia Support Program (NDSP), which:

• helps people living with dementia and their carers and families understand more about dementia
• connects people living with dementia, their families and carers with services that support them to self-manage and live well with dementia for as long as possible
• enables the health and aged care sectors to better respond to increased rates of dementia in the community.

The NDSP is delivered through Dementia Australia.

People living with dementia and their carers can experience discrimination that can lead to social isolation, loneliness and poor mental health.

Research by Dementia Australia suggests that discrimination can also impact the types of health services people living with dementia are offered (for example, not being offered reablement services even though allied health services such as occupational therapy and physiotherapy can help maintain independence and autonomy). Discrimination can also impact the way health professionals communicate with people living with dementia (for example, assuming that the person with the diagnosis no longer has the capacity to contribute to or make decisions for themselves).  

A number of organisations provide dementia education and training for health professionals, aged care workers and the general public, including Dementia Australia, Dementia Training Australia, Dementia Support Australia, as well as universities such as the Wicking Dementia Research and Education Centre.

Lockdown measures during the COVID-19 pandemic have been extremely challenging for people with dementia. Studies suggest that lockdowns and restrictions in response to the pandemic have resulted in rapid declines in cognitive ability, worsening of dementia symptoms and/or onset of new symptoms, and increased rates of depression and anxiety among people with dementia (see this article for international evidence on this topic).

The Dementia in Australia report discusses the negative impacts of isolation and unsuitable care for people with dementia, but due to a lack of national data at the time, it does not present statistics on the impact of COVID-19 lockdowns on people with dementia. See Jim’s story in the report, for a personal account of how family members assisted their loved one with dementia to remain active during the COVID-19 lockdown.

Dementia Australia’s recent report Discrimination and dementia—enough is enough, captures the negative impacts of the COVID-19 pandemic on people living with dementia and their carers.

The association between sports injuries, particularly concussions, and the risk of dementia is a growing area among dementia research. The AIHW National Centre for Monitoring Dementia will continue to monitor risk factors for dementia, and will consider relevant studies and data, as they become available, including the link between concussions and increased risk of dementia.

The AIHW Dementia Unit collaborates with numerous subject matter experts and data custodians across the Institute, and will work with the AIHW Sports Injury team in the future, if data on sports injury and dementia risk become available. The Dementia Unit also engages regularly with the Dementia Working Group, which provides advice on the Institute’s dementia work program, and bring expertise in all areas of dementia, including policy, service delivery, peak bodies and researchers, as well as people with a lived experience of dementia.

The Dementia in Australia report does not include statistics on suicide rates among people with dementia. However, the AIHW Dementia Unit is currently working on a project examining mental health among people with dementia. This may include information on suicide among people with dementia, if appropriate data is available.

Suicide is a key work area for the Institute and the National Suicide and Self-harm Monitoring System has been established as part of the national effort to address suicide and self-harm in Australia.

The AIHW Dementia team regularly engages with external dementia experts and other stakeholders, as it is essential that our work reflect the perspectives, needs, and advice of people living with dementia. Our current Dementia Working Group includes a member with a lived experience of dementia.

The establishment of a formal Dementia Expert Advisory Group, which comprises of dementia experts in various research and medical fields, as well as people with lived experience of dementia and the peak bodies that represent their interest, will be one of the first functions of the AIHW National Monitoring Centre of Dementia.

The Dementia Expert Advisory Group will provided advice and guidance to the AIHW National Centre for Monitoring Dementia on setting its work program and establishing priorities for data development activities.