Dementia Awareness Survey

What does previous research tell us about Australians’ knowledge of dementia?

Despite the widespread impact of dementia, Australians generally have a poor understanding of dementia, and dementia is commonly misunderstood as a normal part of ageing (Kim et al. 2022; Smith et al. 2014). Previous research has shown that knowledge of dementia is lower in people who have no personal experience with a person living with dementia (Eccleston et al. 2021). 

Prior research also found that although most Australians could recognise symptoms of dementia, they did not know that it affects cognitive function as well as the ability to perform everyday tasks (Nagel et al. 2021). Around half (Farrow 2008) knew that dementia risk could be reduced, but most did not realise that cardiovascular risk factors were also risk factors for dementia (Low & Anstey 2009; Talbot et al. 2021; Farrow 2008; Hosking et al. 2015). 

How much do Australians know about dementia?

According to the 2023 Dementia Awareness Survey (the survey), Australians had an average general dementia knowledge score of 21 with a median score of 20 out of a maximum possible score of 50 (Figure 1.1a). This is lower than Australian surveys of people interested in dementia training (median score of 35; Eccleston et al. 2019) or where the majority (59%) had either completed dementia training or had experience with persons with dementia (median score of 28; Eccleston et al. 2021). The difference could be due to differences between the people surveyed – the general public versus those in a dementia-related workforce.

Women had higher dementia knowledge than men (mean score of 22 compared to 20) (Figure 1.1a). This gender difference was significant in the 35–74 age groups (Figure 1.1b).

Figure 1.1: General dementia knowledge score by gender and age group, 2023

Who knows the most about dementia?

The average general dementia knowledge score was compared for each sociodemographic group (Figure 1.2). However, the group difference could be due to other factors, therefore these sociodemographic groups were compared together to identify which groups predict better dementia knowledge (refer to Table S2.1). Significantly higher levels of general dementia knowledge were found in:

• women 
• people with higher levels of education, in particular tertiary qualifications 
• people with a household income of $20,800 or more per year
• people with a family member or friend living with dementia
• people who had work experience with people living with dementia 
• people born in Australia, the UK, the USA, Canada, and NZ
• non-heterosexual people 
• people who lived in Inner regional areas of Australia, when compared with those living in Major cities.

Figure 1.2: Average general dementia knowledge score by demographics and experience with people with dementia, 2023

What dementia knowledge do people have or lack the most?

Survey respondents were asked whether statements about dementia were ‘true’, ‘probably true’, ‘probably false’, ‘false’, or ‘don’t know’, and most and least correctly answered statements are shown in Figure 1.3. 

The onset of dementia is usually very gradual but over half of Australians (58%) answered ‘true’ or ‘probably true’ to the statement that the sudden onset of cognitive problems is characteristic of common forms of dementia. 

Dementia is often mistakenly believed to be a natural part of ageing. Around 1 in 5 (22%) Australians agreed with the statement that ‘dementia is a normal part of the ageing process’, by indicating it as ‘true’ or ‘probably true’. This is lower than a review of public surveys on dementia knowledge and attitudes performed internationally from 2012 to 2017 (Cations et al. 2018), which found that nearly half of all respondents agreed that dementia is a normal part of ageing. This could indicate that understanding of dementia has improved over time or is better in Australia. 

Early or timely diagnosis can improve the quality of life for people with dementia as it may provide options for treatment and planning. Three in 5 (61%) Australians believe that early diagnosis improves the quality of life for people with dementia (Figure 1.3).

There is no cure for neurodegenerative dementias yet and just under 3 in 4 Australians (74% answered ‘false’ or ‘probably false’) do not believe that people can recover from dementia (Figure 1.3).

Three in 5 (63% answered ‘true’ or ‘probably true’) Australians knew that Alzheimer’s disease is the most common form of dementia. Around 4 in 5 Australians (82%) agreed that daily care for a person with advanced dementia is effective when it focuses on providing comfort and people with advanced dementia may have difficulty speaking (78%).

The proportion of Australians who agreed with these statements with certainty (‘true’ for true statements and ‘false’ for false statements) however was low, suggesting Australians are not certain whether what they know about dementia is correct.

Figure 1.3: Percentage of people who responded to true and false statements about dementia, 2023