Dying due to dementia compared to dying with dementia

The discussion about dementia deaths among Australians has so far been restricted to deaths due to dementia, that is, where dementia was recorded as the underlying cause of death (UCOD). In addition to the underlying cause of death, the National Mortality Database contains information on up to 19 associated causes of death (ACOD) – that is, other causes that were instrumental or significantly contributed to the death. Given people with dementia often have other health conditions and there can only be one underlying cause of death recorded, it is important to also account for all other cases where Australians died with dementia (where dementia was recorded as either the underlying cause or an associated cause of death).

In 2021, around 15,800 people died due to dementia (nearly 10,100 women and just over 5,700 men). In comparison, around 29,100 people died with dementia (just over 17,300 women and nearly 11,800 men). This is an important difference as people who have dementia often have other health conditions, which may cause their death rather than dementia (Table S3.7).

Leading underlying causes of death

In 2021, the leading underlying causes of death for people who had dementia recorded as an associated cause of death were:

  • coronary heart disease (2,000 deaths)
  • cerebrovascular disease (just over 1,600 deaths)
  • accidental falls (almost 900 deaths)
  • Parkinson’s disease (almost 830 deaths)
  • diabetes (almost 820 deaths) (Figure 3.7).

As a person may have multiple types of dementia, it is possible for a person to have dementia recorded as both the underlying and associated cause of death. For example, a person may have Alzheimer’s disease as the underlying cause and Vascular dementia as an associated cause of death. Among the 13,700 people who died with at least one type of dementia recorded as an associated cause, almost 440 (3.2%) also had dementia recorded as the underlying cause of death (Table S3.9).

The leading underlying causes of death were fairly similar for men and women where dementia was an associated cause, but varied somewhat with increasing age – Accidental falls was more common with increasing age, whereas deaths due to Diabetes decreased with increasing age.

Figure 3.7: Leading 5 underlying causes of death in 2021 when dementia was an associated cause of death, by sex and age

This figure shows the leading 5 underlying causes of death in Australia by sex and age in 2021, when dementia was an associated cause of death. 

Trends in coding of dementia as the underlying cause of death versus an associated cause of death

Between 2012 and 2021 the age-standardised rate of deaths where dementia was the underlying cause of death increased slightly from 38 to 41 deaths per 100,000 population. In contrast, the rate of deaths where dementia was an associated cause of death decreased from 44 to 36 per 100,000 population over the same period (Figure 3.8).

While we cannot be certain why this is occurring, it may be due to various factors:

  • Australians are living longer and are more likely to be dying from dementia than from other conditions. Notably, there have been decreases in fatal heart attacks and strokes over time. This is resulting in dementia being increasingly attributed as the underlying cause of death, whereas in the past it was more likely to be recorded as an associated cause of death or not recorded at all.
  • Over time, dementia awareness could have significantly improved among health professionals who record and code cause of death information, leading to an increase in dementia being recorded as the underlying cause of death.
  • Changes to coding rules implemented from 2013 have meant that Unspecified dementia is more likely to be recorded as the underlying cause of death rather than as an associated cause of death among people who die with dementia and other specific conditions (including Pneumonitis due to food and vomit). This resulted in an increase in the number of deaths with Unspecified dementia as an underlying cause (ABS 2015).

Details on the rate of deaths per 100,000 population are included in Table S3.10.

Figure 3.8: Dementia-related deaths in Australia in 2012–2021: number and age-standardised rates, by whether dementia was recorded as the underlying cause of death (UCOD) or an associated cause of death (ACOD)

This figure shows that the rate of deaths with dementia increased as an underlying cause of death and decreased as an associated cause of death between 2012 and 2021.