AIHW Dementia Report Sept2021
AIHW Dementia Report Sept2021
AIHW Dementia Report Sept2021
2021
Summary report
This Summary report presents key findings
from the detailed Dementia in Australia online
compendium and covers a broad range of topics
including; prevalence estimates and projections,
mortality, burden of disease, care needs of people
with dementia, and their use of aged care and
health care services. The report also features
information on carers of people with dementia,
direct health and aged care system expenditure
for dementia and dementia among population
groups of interest.
aihw.gov.au
Stronger evidence,
better decisions,
improved health and welfare
Dementia in Australia
2021
Summary report
The Australian Institute of Health and Welfare is a major national agency
whose purpose is to create authoritative and accessible information and statistics
that inform decisions and improve the health and welfare of all Australians.
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We have made all reasonable efforts to identify and label material owned by third parties.
You may distribute, remix and build upon this work. However, you must attribute the AIHW as the copyright holder of the
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Suggested citation
Australian Institute of Health and Welfare 2021. Dementia in Australia 2021: Summary report. Cat. no. DEM 3. Canberra:
AIHW.
Please note that there is the potential for minor revisions of data in this report.
Please check the online version at <www.aihw.gov.au> for any amendments.
Contents
Dementia in Australia at a glance............................................................................................................. iv
Introduction.................................................................................................................................................. 1
In 2021, it’s estimated between 386,200 and 472,000 Australians have dementia ........................... 4
Almost 64,600 people were dispensed scripts for dementia-specific medications in 2019–20 ....... 9
More than half of people living in permanent residential aged care have dementia ..................... 13
$3 billion was spent directly on health and aged care services for dementia in 2018–19................ 14
Carers play a vital role in providing assistance and support to those with dementia..................... 15
How does dementia affect Aboriginal and Torres Strait Islander people? ........................................ 17
Acknowledgments...................................................................................................................................... 22
References................................................................................................................................................... 24
‘… they’re looking at him, he’s fit [and it doesn’t look] like [anything is] wrong ... It doesn’t make any
sense to people … they say he’s great. He’s talking really well. But they don’t see that he can go
3 days without saying a word to me or he hasn’t said my name in 6 months.’
Carrie and her family have faced many challenges since the diagnosis, and one of the hardest was telling
the kids.
‘You live with the uncertainty…of a prognosis. And you try and explain it… and their little hearts broke, I’ll
never forget it, it was devastating.’
Since his diagnosis, Dan left work and can no longer drive. Carrie now organises everything for the family
while also working full time. She took on the caring role because Dan is her husband. Carrie says:
‘We have 2 young children… I want them to see that… when you love someone you look after them and I
wouldn’t deny him the opportunity to see them for as long as he can...’
Carrie’s biggest support network has been her family, Dan’s parents, and Dementia Australia.
Carrie says when she sees other families doing ‘normal’ things—like going camping, riding bikes and kicking
the football with their children—she realises just how different her life is.
‘I would get really really cranky when you see a family at the park… kids are playing on the swings and the
dads [are] pushing them… I always thought he would make an awesome dad when they are teenagers
because he would take them skiing…I just imagined I could see him with the kids out in the snow … that just
can’t happen now…So it’s just changed things.’
‘We’ve done some bucket list trips and have some more planned and we’re making some great
memories for the kids. And it’s sort of fun to do that stuff when you are young rather than [in] your
60s or 70s… we have had a lovely life together and we will continue to have a lovely life together. This
has just thrown a bit of a curveball …so while it’s awful living with an uncertain prognosis, every day
we’re lucky. He’s still here and he gets to see the kids more and they get to see him and do things.’
* T his case study is based on an interview with a carer of person who has dementia. This personal account is not necessarily
representative of the circumstances of other carers or people with dementia or the challenges they may face, but it is our hope
that it will give readers a greater awareness and understanding of the diversity of people’s experiences with dementia.
Names and identifying characteristics have been changed. Image is not representative of the individuals in the story.
This Summary report presents some of the key findings and concepts from the Dementia in Australia
online compendium, which is available at https://www.aihw.gov.au/reports/dementia/dementia-in-
aus/contents/about.
Additional findings, interactive data and information about dementia, support services and aged
care programs can be found in the online report. Important information about data sources and
methodologies to derive statistics are also explained in the online report.
What is dementia?
Dementia is not a single specific condition. Rather, it is an umbrella
term for a large number of conditions that gradually impair brain
function. Dementia may result in impairments or changes with:
cognition, language, memory, perception, personality, behaviour,
and mobility and other physical impairments.
While the onset of dementia is typically gradual, the progression of dementia varies. It is often
described in terms of 3 stages:
• moderate dementia—difficulties become more severe and increasing levels of assistance are
required to help the person maintain functioning in their home and in the community
The progression of dementia will vary from person to person due to: their personal
characteristics (such as their age and whether they have other health conditions), what type of
dementia they have, how severe it is and how old they were when they were diagnosed, and
their environment (such as whether they have suitable care arrangements and can access
health services).
•A
lzheimer’s disease
a degenerative brain disease caused by nerve cell death resulting in shrinkage of the brain
•V
ascular dementia
a disease that is mainly caused by issues with blood flow to the brain (such as a stroke) or bleeding
into or around the brain
•D
ementia with Lewy bodies
a disease caused by degeneration and death of nerve cells in the brain due to the presence of
abnormal spherical structures, called Lewy bodies, which develop inside nerve cells
•F
rontotemporal dementia
a disease that is caused by progressive damage to the frontal and/or temporal lobes of the brain.
Dementia is also associated with other conditions (such as Parkinson’s disease, Huntington’s disease
and Down syndrome), prolonged substance abuse and severe brain injuries.
Age—the risk of developing dementia doubles Family history of the Genetic mutations
every 5 or 6 years for people aged over 65 condition
Number of people
Men Women
70K
60K
50K
40K
30K
20K
10K
0K
30–59 60–64 65–69 70–74 75–79 80–84 85–89 90+
Age
The number of people with dementia rises quickly with age. It is estimated that among Australians
in 2021:
Among Indigenous Australians, the rate of people with dementia is estimated to be 3–5 times as
high as the Australian population overall (Radford et al. 2017; Russell et al. 2020). See page 17 for
more information on dementia among Indigenous Australians.
There is work underway to improve the accuracy of estimates of the number of Australians with
dementia and new approaches to determining dementia prevalence will likely supersede the
estimates shown in this report in coming years.
Much of the variation in the rate of dementia across countries is due to their different population
age structures, with higher rates generally found in ageing OECD nations.
The number of Australians with dementia is predicted to more than double by 2058—from 386,200
in 2021 to 849,300 in 2058 (533,800 women and 315,500 men).
Number of people
Persons Females Males
900K
800K
700K
600K
500K
400K
300K
200K
100K
0K
2021 2026 2031 2036 2041 2046 2051 2056
Year
Until there is a cure or significant advancements in treatment, the best way to reduce the
prevalence of dementia in the future is to minimise exposure to risk factors that increase the
likelihood of developing dementia in later life (Livingston et al. 2017; Prince et al. 2014).
International studies have found that the rate of dementia is declining in countries where the
prevention and management of high blood pressure and cardiovascular disease has improved in
recent years (Roehr et al. 2018). As Australia has improved cardiovascular disease treatment and
management, and reduced the prevalence of other major risk factors for dementia (such as tobacco
smoking), the rate of new cases of dementia may stabilise or fall in the future. As there are current
issues with monitoring the incidence of dementia in Australia, it is unclear whether incidence rates
of dementia in Australia have increased, stabilised or decreased over time.
The number of deaths due to dementia increased from 9,200 deaths in 2010 to 14,700 deaths in
2019. The age-standardised rate, which accounts for differences in the age and sex structure of the
population, rose between 2010 and 2019, from 35 to 40 deaths per 100,000 Australians.
35
12K
Number of deaths 30
10K
25
8K
20
6K
15
4K
10
2K 5
0K 0
2010 2011 2012 2013 2014 2015 2016 2017 2018 2019
Year
In 2019, the rate of deaths due to dementia among those aged 75–79 was 167 deaths per 100,000
men and 155 deaths per 100,000 women respectively. This increased to about 3,600 and 5,300
deaths per 100,000 for men and women aged 95 and over, respectively.
Men Women
Number of deaths due to dementia in 2019* 5,400 9,200
*Note that the number of deaths by sex does not add up to the number of deaths for all persons due to rounding.
As the risk of developing dementia increases with age, the disease burden due to dementia is higher
for older Australians.
For Australians aged 75 and over, dementia was the leading cause of disease burden in women and
second leading cause of disease burden in men (behind coronary heart disease).
56% 44%
was from dying was from living with
prematurely dementia
The study also estimated the attributable burden from 6 established risk factors for dementia—
overweight and obesity, physical inactivity, tobacco smoking, high blood pressure in midlife, high
blood plasma glucose levels and impaired kidney function.
Around 43% of the overall dementia burden in 2018 could have been avoided if exposure to these 6
modifiable risk factors was avoided or reduced to the lowest level possible.
• Fatal and non-fatal burden are summed together to provide the total burden, measured using
disability-adjusted life years (DALY).
Preliminary findings from the Australian Burden of Disease Study 2018 are at available at
https://www.aihw.gov.au/reports/burden-of-disease/burden-of-disease-study-2018-key-findings/
contents/about.
General practitioners (GPs) are often the first point of contact when concerns are raised by the
patient or the patients’ carer, family or friends. If a GP suspects dementia, it is best practice for GPs
to refer patients to qualified specialists (such as a geriatrician or psycho-geriatrician) or memory
clinics for a more comprehensive assessment to take place.
Our understanding of dementia in the GP and specialist settings remains a key data gap for
monitoring dementia in Australia.
Service usage differed for those who were living in permanent residential aged care compared
with those living in the community, but only at older ages:
• for people aged under 80, the number of services used by people who were living in residential
aged care was fairly similar to the number used by people who were living in the community
• from age 80 onwards, the number of services used by people living in residential aged care was
greater than the number used by people living in the community.
The rate of services used by people with dementia living in residential aged care increased steeply
with age—from 45 services per 1,000 people among those ages 80–84 to 241 services per 1,000
people among those aged 95 or over.
Further details on this focused study can be found in the detailed Dementia in Australia online
report at: https://www.aihw.gov.au/reports/dementia/dementia-in-aus/contents/about.
In 2019–20, there were over 623,300 prescriptions dispensed for dementia-specific medications to
just under 64,600 Australians with dementia aged 30 and over. This is equivalent to 9.7 scripts per
person who was dispensed a script for dementia-specific medication. Each script is usually for a
month’s supply of medication.
Of the just under 64,600 Australians who were dispensed scripts for dementia-specific medications:
The number of scripts dispensed for dementia-specific medications increased by 43% between
2012–13 and 2019–20. The increase was greater for men (51%) than women (37%).
Donepezil, Galantamine and Rivastigmine are used for mild to moderate Alzheimer’s
disease. They work by blocking the actions of the enzyme, acetylcholinesterase, which destroys
acetylcholine—a major neurotransmitter for memory. The use of these medicines may lead to
increased communication between nerve cells and slow dementia progression.
Memantine is used for moderately severe to severe Alzheimer’s disease. It works by blocking
the neurotransmitter, glutamate, which causes damage to brain cells and is present in high levels
in people with Alzheimer’s disease.
Donepezil—409,500 scripts
Rivastigmine—76,100 scripts
Galantamine—74,500 scripts
Memantine—63,300 scripts
In 2019–20, of the almost 64,600 Australians who were dispensed scripts for dementia-specific
medications:
Around 39% of people with scripts dispensed for antipsychotic medications and dementia-specific
medications were supplied Risperidone (the only antipsychotic that is currently listed on the PBS for
BPSD) followed by Quetiapine (29%) and Olanzapine (24%).
•1
3 days was the average length of stay—this was almost 5 times longer
than the average hospitalisation that year (2.7 days).
40
20k 35
Hospitalisations per 10,000
30
15k Number of hospitalisations
25
20
10k
15
5k 10
0k 0
2009–10 2010–11 2011–12 2012–13 2013–14 2014–15 2015–16 2016–17 2017–18 2018–19
Year
There are 2 main types of assessment services depending on the level of care needed:
•H
ome Support Assessments—face-to-face assessments provided by Regional Assessment
Services for people seeking home-based entry-level support that is provided under the
Commonwealth Home Support Programme
•C
omprehensive Assessments—provided by Aged Care Assessment Teams for people with
complex and multiple care needs to determine the most suitable type of care (home care,
residential or transition care).
These services are generally provided on the basis of need—there are no age restrictions for
eligibility (except for the Commonwealth Home Support Programme). Information on the use of
aged care services by people with dementia is not available for all types of aged care—particularly
the use of community based aged care services.
• 54% were women (22,200 women) and 46% were men (18,900 men)
• The average age for women with dementia was 82 and it was 81 for men
The majority of people with dementia (98%) were living in the community at the time of their
assessment.
Dementia is a common cause for needing a comprehensive assessment and people with dementia
accounted for 17% of all comprehensive assessments completed in 2019–20.
• Men were more likely than women to be living with their partner—62% of men and 34% of
women with dementia were living with their partner at the time of assessment
• Women with dementia were more likely to be living alone at the time of assessment (40%) than
men with dementia (20%).
Over half of both women (54% or nearly 85,700) and men (54% or over 46,200) living in permanent
residential aged care had dementia. One-third of people under the age of 65 (33% or 2,000)
had dementia (also known as younger onset dementia). More men than women had younger
onset dementia (1,100 men and 930 women). The likelihood of a person with dementia entering
permanent residential care is influenced by a range of circumstances, such as a person’s current
living arrangements (women tend to live longer than men and thus are more likely to be living
alone), availability of informal care, and the severity of their dementia.
Depression and mood disorders (47%) and a range of arthritic disorders (45%) were the most
common co-existing medical conditions among people with dementia living in permanent
residential aged care. Medical conditions were recorded if they impact on an individual’s care needs.
The care needs of people with dementia living in permanent residential aged care increased
with age, with the exception of the cognition and behaviour domain, where needs were highest
among those with younger onset dementia. This could be in part a result of: severe behavioural
and psychological symptoms of dementia being common in dementia types that occur more
frequently in younger ages; younger people being more mobile and having fewer co-morbidities;
or providers having a different focus when assessing younger peoples’ care needs.
In 2018–19, $3.0 billion of health and aged care spending was directly attributable to dementia.
Spending on residential aged care services accounts for the largest share of dementia spending
(56% or $1.7 billion), followed by community based aged care services (20% or $596 million) which
was primarily for the Home Care Packages program (costing $397 million).
Many people with dementia also have co-existing conditions, some of which may be directly
associated with dementia. If these costs were included, the total direct health and aged care system
spending for people with dementia (rather than directly attributable to dementia) in 2018–19 would
be $9.8 billion.
As dementia progresses, carers are essential in almost all aspects of their daily
living. Significant care is also provided by friends and family of people with
dementia who live in permanent residential aged care facilities.
The AIHW estimates that in 2021 there are between 134,900 and 337,200 informal carers of
people with dementia (that is, someone who provides ongoing informal assistance to a person with
dementia). This is a conservative estimate based on limited data, and excludes people providing care
to those living in permanent residential aged care facilities and paid workers or volunteers arranged
by an organisation or formal service.
According to the Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers, in 2018
more than 70,200 people were primary carers of a person with dementia (that is, the carer providing
the most informal, ongoing assistance).
Among primary carers of people with dementia, 3 in 4 were female and 1 in 2 were caring for their
partner with dementia.
Factors that may contribute to the demands of providing care include the personal characteristics of
carers and care recipients, living arrangements of the carer and care recipient, carers’ employment,
care recipient and carers’ financial situation, and the level of support available from formal services
and other family and friends for the care recipient.
According to the ABS Survey of Disability, Ageing and Carers, in 2018, when primary carers of people
with dementia were asked about the physical and emotional impact of their caring role:
The demands of caring for a person with dementia can also affect a carers work commitments
and financial obligations. Over half (52%) of primary carers of people with dementia were affected
financially since taking on the caring role—24% experienced a drop in income and 28% had extra
expenses since taking on the caring role.
Among primary carers of people with dementia who needed more support:
• 1 in 5 primary carers reported they need more physical assistance or emotional support.
By comparison, 1 in 8 primary carers of people without dementia reported that needed more
respite care, and 1 in 8 reported that they need more physical assistance or emotional support..
0 5 10 15 20 25 30 35
Percent
Primary carers of people with dementia Primary carers of people without dementia
There are also gaps in our understanding of dementia in Indigenous Australians, including a lack
of national Indigenous representation in key data, and limited data on Indigenous-specific services
that need to be kept in mind when interpreting the findings presented here.
• The prevalence of dementia among Indigenous Australians aged 60 and over who live in urban and
regional areas is about 3 times as high as the rate for all Australians aged 60 and over (21% and
6.8%, respectively) (Radford et al. 2017)
• A dementia prevalence rate of 14.2% has been estimated among Torres Strait Islanders aged
between 45 and 93 years (Russell et al. 2020).
The latest burden of disease estimates for Indigenous Australians are for 2011. At that time, the
age-standardised rate of disease burden due to dementia was 2.3 times as high among Indigenous
Australians (12.8 DALY per 1,000 population) as the burden among other Australians (5.7 DALY per
1,000 population). Among people aged 75 and over, dementia was the leading cause of disease
burden for Indigenous women and the third leading cause for Indigenous men (behind coronary
heart disease and chronic obstructive pulmonary disease). More recent data estimating the burden
of disease for Indigenous Australians are expected in late 2021.
• Indigenous men were more likely to be hospitalised due to dementia (25 hospitalisations per
10,000 Indigenous Australians) than Indigenous women (20 per 10,000)
• 12.5 days was the average length of stay, which was similar to the average length of stay for all
hospitalisations due to dementia that year (13 days).
• Indigenous men and women with dementia were older than Indigenous Australians without
dementia
• Indigenous Australians with dementia tended to use permanent residential aged care services at
higher rates in more remote areas.
The number of Indigenous Australians with dementia living in permanent residential aged care has
increased in recent years from just under 1,100 in 2014–15 to just under 1,300 in 2019–20.
It is important to note that data presented here on Indigenous Australians living in permanent
residential aged care do not include people accessing some government-subsidised Indigenous-
specific programs, such as the National Aboriginal and Torres Strait Islander Flexible Aged Care Program.
Aboriginal Community Controlled Health Services (ACCHS) deliver holistic and culturally
appropriate health services and are often a first point of contact for Indigenous Australians with
dementia. ACCHSs can also refer people to other services, including specialist care, and help
people with dementia to navigate the aged care system.
The National Aboriginal and Torres Strait Islander Flexible Aged Care Program aims to provide quality,
flexible aged care for older Indigenous Australians in a culturally safe environment. The program
operates mainly in regional, remote, and very remote areas, and provides various services,
including home and residential care. This program provides aged care to a large number of
Indigenous Australians—at 30 June 2020, there were almost 1,300 places available.
Cultural and linguistic diversity among people with dementia in Australia largely reflects migration
waves to Australia in earlier years, and these waves are evident when looking at the country of birth
and year of arrival in Australia of people who died with dementia.
Among people who had dementia recorded on their death certificate between September 2016 and
December 2017:
• People born in Asia, the Middle East and Africa more commonly immigrated to Australia after
the mid-1960s. For example, 67% of people born in South East Asia (including Vietnam and the
Philippines) who died with dementia arrived between 1976 and 1995.
Migration patterns in earlier years are important to consider for service planning and delivery for
people with dementia in Australia, as well as servicing carers of people with dementia.
1
in 2 people with dementia who were born in non-English speaking
countries and were living in the community relied on informal care
and assistance only.
By comparison, about 1 in 3 people with dementia who were born in English speaking countries
relied on informal care and assistance only.
For some cultures, the responsibility of caring for the elderly population falls upon kin. There may
also be limited understanding of, and/or stigma attached to dementia. It can also be difficult for
people to access and use services if they are not designed with culturally and linguistically diverse
communities in mind, particularly if not provided in their main language spoken.
The AIHW Dementia Working Group, whose members include Kaarin Anstey, Henry Brodaty,
Colm Cunningham, Annette Dobson, Linda Fardell, Anthony Hobbs, Verity Russell,
Marissa Ostuszewski, Velandai Srikanth, Kaele Stokes, Prue Torrance, Kumar Ujjineni and
Stephanie Ward have contributed their expertise and provided valuable feedback on this report
throughout its development. In addition, the Australian Government Department of Health
provided valuable feedback and review on this report.
The AIHW would also like to thank Tom Morris and Marie Alford from Dementia Support Australia,
and Nigel McPaul and Emma Craig from Dementia Australia for providing AIHW with data and
reviewing this report; Jackie Hayes, Sally Lambourne and the Consumer Engagement team at
Dementia Australia for sourcing and interviewing our anonymous contributors; Dina Lo Giudice,
Kate Smith and Debra Reid for their valuable feedback on the dementia among Aboriginal and
Torres Strait Islander people content; and Lauren Moran and Cathy Etherington from the Australian
Bureau of Statistics.
Lastly, the AIHW would like to thank the people who shared their personal experiences with either
living with dementia or caring for a loved one with dementia. Your honestly and willingness to share
your experience with readers is greatly appreciated.
If you require more information about dementia, want to know where to seek help if dementia
is suspected or want to find out about available support services refer to:
National Dementia Helpline: 1800 100 500 (a free and confidential service to discuss dementia
and memory loss concerns for yourself or others)
Dementia Behaviour Management Advisory Service: 1800 699 799 (if needing help to manage
behaviour associated with dementia).
For information on, and applying for access to government-subsidised aged care services
My Aged Care website: https://www.myagedcare.gov.au/.
Livingston G et al. 2017. Dementia prevention, intervention, and care. Lancet. 390(10113):2673-2734.
LoGiudice DL, Smith K, Fenner S, Hyde Z, Atkinson D, Skeaf L et al. 2016. Incidence and predictors
of cognitive impairment and dementia in Aboriginal Australians: a follow-up study of 5 years.
Alzheimer’s & Dementia 12(3):252–261.
OECD (Organisation for Economic Co-operation and Development) 2019. Health at a Glance
2019: OECD indicators. Paris: OECD Publishing. doi:https://doi.org/10.1787/4dd50c09-en.
Prince M, Albanese E, Guerchet M & Prina M 2014. World Alzheimer Report 2014— dementia and
risk reduction: an analysis of protective and modifiable factors. London: Alzheimer’s Disease
International.
Radford K, Delbaere K, Draper B, Mack HA, Daylight G, Cumming R et al. 2017. Childhood stress and
adversity is associated with late-life dementia in Aboriginal Australians. The American Journal of
Geriatric Psychiatry 25(10):1097–1106.
Roehr S, Pabst A, Luck T & Riedel-Heller SG 2018. Is dementia incidence declining in high-income
countries? A systematic review and meta-analysis. Clinical Epidemiology 10:1233.
Russell SG, Quigley R, Thompson F, Sagigi B, LoGiudice D, Smith K et al. 2020. Prevalence of
dementia in the Torres Strait. Australasian Journal on Ageing 40(2):e125–e132.
Smith K, Flicker L, Lautenschlager NT, Almeida OP, Atkinson D, Dwyer A et al. 2008. High prevalence
of dementia and cognitive impairment in Indigenous Australians. Neurology 71(19):1470–1473.
aihw.gov.au
Stronger evidence,
better decisions,
improved health and welfare