Attitudes towards dementia and people living with dementia

How are attitudes towards people living with dementia measured?

The Dementia Public Stigma Scale (DePSS, Kim et al. 2022) was used to measure cognitive (dementia-related stereotypes), emotional (negative prejudices and emotional reactions), and behavioural (discriminatory behaviours) aspects of stigma.  The total DePSS score was calculated by summing all 16 items, ranging from 16–112, with a higher score indicating a higher public stigma of dementia. Sub-scores were calculated by summing relevant items for three aspects of stigma (ranging from 10–70, 4–28, and 2–14 for cognitive, emotional, and behavioural aspects of stigma respectively). Refer to the Technical notes for more information on the scale.

What do we mean by dementia-related stigma?

The negative and often unfair beliefs, prejudices, and discriminatory behaviours that people have about dementia and people living with dementia are called dementia-related stigma. 

Stigma about dementia is common (ADI 2019), particularly when people have little understanding or knowledge of the condition. Stigma can lead to delays in people seeking help, a timely diagnosis and treatment. People living with dementia often report experiencing discrimination, judgement, and preconceived ideas about their abilities (Kim et al. 2019). Stigma can also influence how individuals accept their dementia diagnosis and whether they share their diagnosis with others. 

Do Australians hold stigma towards people living with dementia?

The Dementia Awareness Survey collected information on Australians' attitudes towards dementia and people living with dementia. It did this by looking at the concept of dementia-related stigma.

The survey found that Australians hold stigma towards dementia and/or people living with dementia (average overall stigma score of 51 out of 112, where a lower score means a lower level of stigma; Figure 4.1). Women tended to have lower levels of dementia stigma than men, as found in a previous study (Werner and Kim 2021). Results for the individual aspects of stigma also indicated varying levels and types of stigma towards dementia and/or people living with dementia:

  • Cognitive: this aspect measures what kind of dementia-related stereotypes Australians hold, e.g., believing a person living with dementia is an old person with a memory problem and behaves unpredictably. People scored an average of 35 out of 70 on the cognitive aspect of stigma.
  • Emotional: this aspect measures negative emotional reactions such as feeling comfortable or confident around people with dementia. People scored an average of 12 out of 28 on the emotional aspect of stigma.
  • Behavioural: this aspect measures what kind of discriminatory behaviours Australians take towards people living with dementia, e.g., avoiding people living with dementia. People scored an average of 4.6 out of 14 on the behavioural aspect of the stigma.

It is possible that respondents understated their level of stigma due to social desirability bias, where respondents provide a response that they think is more socially acceptable rather than how actually they think or behave.

Figure 4.1: Average stigma score, by aspect of stigma, gender and age group, 2023

The bar chart shows in total, older Australians had lower levels of overall stigma, largely driven by emotional and behavioural stigma scores. 

How did the results vary for different population groups?

The average total dementia stigma score was compared among the different sociodemographic groups (Figure 4.2) and these groups were compared all together to identify which groups had higher or lower levels of stigma (refer to Table S2.3). Significantly lower levels of dementia-related stigma were found in:

  • women (Figure 4.1)
  • those born in Australia, the UK, the USA, Canada, and NZ and those who spoke English at home
  • non-heterosexual people
  • those with a family member or friend with dementia
  • those who had worked with people with dementia.

Figure 4.2: Dementia-related stigma and demographics, 2023

The bar chart shows respondents from very remote Australia had the highest dementia stigma score (58), while respondents who worked with people with dementia had the lowest (47).

What do Australians think of dementia and people living with dementia?

There are several commonly held stereotypes about people with dementia, ranging from the capabilities of people with dementia to dementia’s impact on society. More than half of Australians agreed that people with dementia should always be supervised (67%) and that people with dementia are unpredictable (62%; Figure 4.3). Only around half of Australians indicated that they feel confident with (54%) or relaxed around (47%) people with dementia.

Positively, more than 8 in 10 Australians agreed that people with dementia can enjoy life (83%) and that it is possible to enjoy interacting with people with dementia (83%), suggesting that Australians believe that people with dementia can have quality of life. More than 3 in 4 people (77%) were not afraid of people with dementia and 2 in 3 (66%) were comfortable touching people with dementia.

Only a small number of Australians indicated they would exclude people with dementia from activities (8.3%) or ignore them (4.8%).

Figure 4.3: Percentage of people who hold positive or negative attitudes towards people living with dementia, 2023

The stacked bar charts show that respondent’s agreement with negatively framed statements was varied (4.8% to 67%), while their agreement with positively framed statements was reasonably high (47% to 83%). 

Does better dementia knowledge lead to lower levels of stigma?

Australians who knew more about dementia tended to have lower levels of dementia stigma, suggested by a small correlation (Pearson correlation coefficients less than 0.3) between stigma and both the level of general dementia knowledge and dementia risk reduction knowledge (p = <0.0001; refer to Table S3).