Deaths due to dementia

Key statistics 

Dementia is a progressive condition that leads to reduced life expectancy. However, time from diagnosis to death is highly variable. Survival time is affected by age, sex, dementia type and severity at diagnosis, among other factors (Brodaty et al. 2012). In addition, dementia is not always the direct cause of death as the condition often impairs an individual’s physical health and their ability to cope with other diseases (Dementia Australia 2019).

The mortality statistics presented here are derived from the National Mortality Database and, unless otherwise specified, refer to cases where a death was due to dementia, also known as the ‘underlying cause of death’. The National Mortality Database holds records for deaths in Australia from 1964 and comprises information about causes of death and other characteristics of the person, such as sex, age at death, area of usual residence and Indigenous status. Causes of death were coded using the 10th version of the International Statistical Classification of Diseases and Related Health Problems (ICD-10), an international standard agreed by the World Health Organization for defining and reporting causes of death. Refer to the Technical notes for further information on death data and the codes used to classify dementia in the National Mortality Database.

Refer to the Mortality data tables for underlying data presented in these pages.

Dementia is a leading cause of death in Australia

In 2020, dementia was the second leading cause of death in Australia after coronary heart disease, and was the leading cause of death for women. There were a total of 14,500 deaths due to dementia, with more women than men dying due to the condition (around 9,100 and 5,300 deaths, respectively). This corresponds to dementia causing 9.6% of all deaths in Australia in 2020 (or 12.6% of all deaths among women and 6.8% of all deaths among men).

Figure 3.1 shows the leading 5 causes of death for Australians in 2020, by age and sex. Dementia becomes an increasingly common cause of death with increasing age, and was the leading cause of death for persons aged 85 and over. For women, it was also the leading cause of death among those aged 75 and over.

Details on the total number of deaths and the age-specific rate of deaths per 100,000 population are displayed when the mouse is hovered over each leading cause of death.

Figure 3.1: Leading causes of death in Australia in 2020, by age and sex

Figure 3.1 is a bar graph showing the leading 5 causes of death in Australia by sex and age in 2020. Overall, dementia is the second leading cause of death in Australia. It shows that dementia becomes a higher ranked cause of death with increasing age. Dementia was the leading cause of death of Australians aged 85 and over, and leading cause of death for Australian women aged 75 and over.

Figure 3.2 presents more details on deaths due to dementia by age and sex in 2020. The rate of deaths due to dementia among those who died aged 75–­79 was 155 and 148 deaths per 100,000 population for men and women, respectively. The rate increased to 3,241 and 4,933 per 100,000 population for men and women aged 95 and over, respectively. The majority of deaths due to dementia occurred among men and women aged 85–94 years.

Figure 3.2: Deaths due to dementia in 2020: number and age-specific rates, by age and sex

Figure 3.2 is a line bar graph showing by age and sex in 2020, the number of deaths with dementia as an underlying cause of death, referred to as ‘deaths due to dementia’ and a line graph showing the number of deaths due to dementia per 100,000 people. The number of deaths and the rate of deaths increased with increasing age, with most occurring among people aged between 85 and 94.

Box 3.1: Impact of COVID-19 on people with dementia 

People with pre-existing chronic conditions, such as dementia, have a greater risk of developing severe illness from COVID-19. While pre-existing chronic conditions do not cause COVID-19, they increase the risk of COVID-19 complications and therefore increase the risk of death (ABS 2022). Fatal COVID-19 outbreaks have involved many people with dementia.

Pre-existing chronic conditions were reported on death certificates for 8,871 of the 11,077 deaths due to COVID-19 that were registered by 30 November 2022 in Australia. Of these deaths, 30% had dementia (including Alzheimer’s disease) recorded. COVID-19 was an associated cause of death for a further 511 deaths due to dementia (including Alzheimer’s disease) (ABS 2022).

The indirect effects of COVID-19 on people with dementia – including reduced uptake of preventative healthcare services leading to delayed diagnoses, as well as spikes in mental illness, such as loneliness and depression – are not well understood but are thought to be substantial.

Dementia deaths have increased over the 2010–2020 period

The number of deaths due to dementia increased from 9,200 deaths in 2010 to 14,500 deaths in 2020 (Figure 3.3). This increase was seen for both men and women. Each year more women than men died due to dementia. As age is the biggest risk factor for dementia, the increase in the number of Australians dying from dementia is in part a reflection of more Australians living to older ages.

The age-standardised rate of deaths due to dementia, which accounts for changes in the Australian population over time, increased slightly between 2010 and 2020, from 35 to 38 deaths per 100,000 population; this increase mostly occurred between 2010 and 2014 (from 35 to 41 deaths per 100,000 population), and was followed by relatively stable rates from 2014 to 2020. Over the period 2010 to 2020, death rates increased slightly for both men (from 31 to 36 deaths per 100,000) and women (from 36 to 39 deaths per 100,000). The increase in the number of deaths due to dementia may not be entirely explained by Australia’s increasingly ageing population, and the prevalence of dementia may have also changed over the period from 2010 to 2020.

Other factors that may have contributed to changes in the number and rate of deaths due to dementia over the last decade include:

  • Changes in ICD-10 instructions for coding deaths data have resulted in the assignment of some deaths to Vascular dementia (F01) where previously they may have been coded to Cerebrovascular diseases (I60–I69).
  • Legal changes allowing veterans and members of the defence forces to relate death from vascular dementia to relevant service and an accompanying promotional campaign targeted at health professionals, are thought to have increased the number of dementia deaths among this group (ABS 2015).

Figure 3.3: Deaths due to dementia in Australia over the period 2010 to 2020: number and age-standardised rate by sex

Figure 3.3 is a line graph showing the number and age-standardised rates of men, women and people who died due to dementia in Australia between 2010 and 2020. It shows the number of people who died due to dementia increased between 2010 and 2020, which in part is a reflection of Australians living to older ages. The age-standardised rates of people who died due to dementia increased between 2010 and 2017, declined slightly between 2017 and 2018, remained stable between 2018 and 2019 and declined slightly between 2019 and 2020. These patterns were seen for men and women.

How are dementia types coded in death certificates?

Although the National Mortality Database contains information on specific types of dementia, this information is not always systematically recorded on death certificates. Coding changes and variations in certification practices have likely resulted in an increase in deaths coded to dementia (ABS 2015). Descriptions in death certificates may indicate dementia but not a particular type of dementia, and in these cases, the type of dementia would be recorded as Unspecified dementia. These influencing factors should be kept in mind when interpreting deaths by dementia type.

In 2020, for people aged 65 and over, the most common specific dementia types recorded were Alzheimer’s disease (4,400 deaths) and Vascular dementia (1,600 deaths). Unspecified dementia, that is, when the type of dementia was not known, was recorded for 7,800 deaths (Table S3.4). Together, Frontotemporal dementia, Lewy body dementia and Dementia due to the effects of substance use, accounted for 530 deaths. Interestingly, as age increased, so did the age-specific rate of deaths classified as due to Unspecified dementia (Figure 3.4). This may be due to challenges in diagnosing and reporting dementia among older individuals who have other comorbidities, and similar trends have been found in other recent studies (Gao et al. 2018; PHE 2016).

Figure 3.4: Deaths due to dementia in 2020: age-specific rates, by sex and dementia type

Figure 3.4 is a bar graph showing the age- and sex-specific rates of deaths due to different types of dementia in 2020 (Alzheimer’s disease, Unspecified dementia, Vascular dementia and Other dementias) from age 65 onwards. The rate of deaths due each type of dementia increased with age. Unspecified dementia was responsible for the highest rate of deaths in each age group, followed by Alzheimer’s disease and ​Vascular dementia.

Emerging work in Australia to better understand dementia typing in deaths data

Over the 2010–2020 period, the age-standardised rate of deaths due to Unspecified dementia increased from 19 to 24 deaths per 100,000 people between 2010 and 2017, but then decreased slightly to 20 deaths per 100,000 people in 2020 (Figure 3.5). The reasons for this trend are not well understood.

The Australian Bureau of Statistics (ABS) and the University of Queensland are currently analysing changes in how dementia deaths have been certified by doctors over time. This analysis will also examine the interaction between certified terms and the application of ICD mortality coding rules as well as differences across jurisdictions. This work will be valuable to understand what is driving changes in dementia typing over time and how data users should interpret coding changes over time, and may lead to recommendations that could improve the specificity of dementia types in future data sets. Recommendations will also be provided to certifiers on how recording of dementia deaths can be improved (NHMRC 2019).

Figure 3.5: Deaths due to dementia over the period 2010 to 2020: age-standardised rates, by dementia type

Figure 3.5 is a line graph showing the age-standardised rates of deaths due to dementia in Australia between 2010 and 2020 by type of dementia (Alzheimer’s disease, Unspecified dementia, Vascular dementia). It shows that the rate of Unspecified dementia increased between 2010 and 2017, but then decreased from 2017 to 2020. The reasons for this decrease are not well understood. The rate of Alzheimer’s disease increased slightly between 2010 and 2020, whereas the rate of Vascular dementia decreased slightly between 2012 and 2013, but has remained stable from 2014 onwards.

Geographic and socioeconomic area variations

Figure 3.6 shows age-standardised rates of death due to dementia in 2020 by sex, and by different geographic areas and socioeconomic groups. After adjusting for population differences, the age-standardised rate of deaths due to dementia:

  • varied across states and territories – ranging from 37 deaths per 100,000 population in Western Australia to 55 per 100,000 population in the Australian Capital Territory
  • varied by remoteness – the rate was highest in Major cities (42 deaths per 100,000 population) and lowest in Remote areas< 25 per 100,000 population)
  • was relatively similar across socioeconomic areas – ranging between 39–43 deaths per 100,000 population (Figure 3.6).

Recent evidence points to the high variability of appropriate dementia care across Australia as well as of dementia awareness among health-care and aged care workers, which could be impacting where people with dementia die, and when and how dementia deaths are coded (Royal Commission 2019). Information on factors such as place of death, if captured comprehensively, may help to shed some further light on end-of-life care in Australia.

Figure 3.6: Deaths due to dementia in 2020: age-standardised rates, by sex, and by geographic and socioeconomic areas

Figure 3.6 is a bar graph showing the age-standardised rates of deaths due to dementia in Australia in 2020 for men, women and persons by state or territory, remoteness and socioeconomic areas. Rates varied by state or territory as well as by remoteness areas, with the highest rates in the Northern Territory and in Major cities and the lowest rates in Western Australia and in Remote areas. Rates were similar across socioeconomic areas.

Box 3.2: Where do deaths due to dementia occur?

Place of death, the location or setting in which an individual dies, is an important indicator for end-of-life care. Place of death is currently recorded on either a Death Registration Form or the Medical Certificate of Cause of Death, and it is mostly captured as free text that can vary significantly across jurisdictions (ABS 2021).

In 2021, the ABS released the results of a pilot study in which they developed and applied a methodology to assign a place of death to deaths occurring in 2019, based on data sourced from the Deaths Registration Form and the Medical Certificate of Cause of Death. Deaths were assigned to one of five categories:

  • Home/residence
  • Residential aged care facility
  • Hospital/medical service area
  • Other
  • Unspecified.

Details of the methodology of assignment can be found on the ABS website.

In 2019, the majority of deaths due to dementia (including Alzheimer’s disease) occurred in a residential aged care facility (77%), with 20% occurring in a hospital or medical service area, and 2.5% occurring in a home or residence. Compared with the other selected causes of death examined, dementia had the highest proportion of deaths occurring in aged care facilities and the lowest occurring in hospitals or medical service areas. This is likely reflective of the higher proportion of people with dementia who reside in aged care facilities at end of life due to disease progression and complex care needs.