2: Dementia awareness and stigma
There are 4 main activities proposed to improve available data on dementia awareness and stigma in the population. These include activities to:
- 2a: Conduct nationally representative survey/s of dementia awareness and attitudes in the Australian community
- 2b: Collect representative data on dementia awareness and attitudes among priority groups (including First Nations people and CALD groups)
- 2c: Collect data on the experiences of people with dementia and their carers (including experience of stigma and discrimination and interactions with care providers)
- 2d: Collect data on experiences of people with dementia and their carers among priority groups (including First Nations people and CALD groups).
These activities may involve single projects, or multiple projects to enable monitoring of trends over time or to focus on a specific population group. Each activity description provides information on the intended outcome, level of investment required, timeframe for completion of the activity and who is responsible for undertaking the activity.
Activity 2a: Conduct nationally representative survey/s of dementia awareness and attitudes in the Australian community
This activity involves conducting a national survey on the public’s awareness of and attitudes towards dementia (including behaviours undertaken to reduce risks). Understanding public knowledge and beliefs about dementia is important to inform the design and targeting of national initiatives and provide baseline data for measuring progress. Data from this activity would provide baseline information to monitor the NDAP’s aims of expanding dementia awareness, reducing the stigma and understanding risk factors for dementia. Subsequent surveys would need to be undertaken to enable reporting of trends over time and monitor progress of NDAP objectives.
| Outcome | Data on community attitudes and knowledge of dementia and risk factors to inform where knowledge gaps are and what types of information needs to be provided; repeated surveys would measure any changes following awareness campaigns and actions implemented from the NDAP. Data can be used to report on NDAP action 2: Tackle stigma, improve awareness and inclusivity. |
|---|---|
| Level of investment | Low: Low investment is needed to conduct a single survey but continuous investment is needed for repeated surveys. |
| Timeframe | Short term: The first survey has been completed and repeat surveys should be conducted every 3–5 years to collect data over time. |
| Responsible stakeholder | AIHW NCMD |
| Progress | Complete: The baseline Dementia Awareness Survey was conducted in 2023, and findings were released on the AIHW website. The survey found that generally, Australians have significant knowledge gaps about dementia and dementia risk factors, other than commonly known risk factors. Although almost all Australians engaged in one or more behaviours that can reduce their risk of developing dementia, they generally did so for reasons other than dementia prevention. Australians also hold varying levels and types of stigma towards dementia and/or people living with dementia. The next Dementia Awareness Survey is planned for 2027–28. |
Activity 2b: Collect data on dementia awareness and attitudes among priority groups (including First Nations people and CALD groups)
Like the previous activity (Activity 2a), this activity involves collecting information on the awareness of and attitudes towards dementia (including behaviours to reduce risks) among First Nations people and/or culturally and linguistically diverse (CALD) groups. The sampling method, design and respondent engagement strategies should be designed to be culturally appropriate, recognising that different cultural attitudes around dementia will require different approaches. For this reason, the activity could involve several distinct projects for specific population groups. Projects should be designed to maximise participation and data collection from First Nations people and CALD groups and may involve the collection of qualitative rather than quantitative data. Data collection at subsequent time intervals would enable data and themes to be examined over time.
| Outcome | Data on attitudes and knowledge of dementia and risk factors among priority groups to inform where knowledge gaps are and what types of information need to be provided; repeated data collections would assess changes following awareness campaigns and actions implemented from the NDAP. Data can be used to report on NDAP action 2: Tackle stigma, improvement awareness and inclusivity. |
|---|---|
| Level of investment | High: CALD and First Nations people-specific data collection requires greater resourcing and consultation. |
| Timeframe | Medium: This activity should be conducted periodically to collect data over time. |
| Responsible stakeholder | Academic researchers; organisations with experience in collecting data among priority population groups |
| Progress | Not started |
Activity 2c: Collect data on the experiences of people with dementia and their carers
This activity involves the collection of data on people with dementia and their informal carers. This may require multiple activities to understand a range of experiences such as stigma and discrimination related to dementia, supported decision making, dementia diagnosis and treatment, post-diagnostic support, interactions with care providers, timeliness and barriers to diagnosis, and experiences of the caring role. Data collection at subsequent time intervals would enable data over time and trends to be examined.
| Outcome | Initial collection would provide data on the experiences of people living with dementia and their carers and could identify:
Repeated data collections would measure changes following actions implemented from the NDAP. Data can be used to report on NDAP action 4: Improve dementia diagnosis and post-diagnostic care and support. |
|---|---|
| Level of investment | Medium–high: The level of investment will depend on the data collection methods. However, this activity will likely require in-person, over the phone or virtual interviews with people with dementia and collection of qualitative data. There may be broader options for collecting data from carers but need to consider preferences for engagement. |
| Timeframe | Medium: This activity to collect baseline data is underway and should be conducted periodically to collect data over time. |
| Responsible stakeholder | AIHW NCMD; Academic researchers; organisations with experience in collecting data from people living with dementia and their carers |
| Progress | As part of a Dementia Data Partnership Project, the University of Canberra was contracted to undertake a Living with Dementia Survey. Results are expected in late 2026. |
Activity 2d: Collect data on experiences of people with dementia and their carers among priority groups (including First Nations people, CALD groups and people living with younger onset dementia)
Like the previous activity (Activity 2c), this activity involves the collection of data on people with dementia and their carers. This may require multiple projects to understand a range of experiences such as stigma and discrimination related to dementia, culturally appropriate post-diagnostic support, dementia diagnosis and treatments, and interactions with care providers, timeliness and barriers to diagnosis, and experiences of the caring role.
Activities should be designed to maximise participation and data collection. For this reason, the activity would involve distinct projects for specific population groups. Data collection at subsequent time intervals would enable data over time and trends to be examined.
For First Nations and CALD-specific data collection, methods and respondent engagement strategies should be designed to be culturally appropriate, recognising that different cultural attitudes around dementia will require different approaches.
For people living with younger onset dementia, surveys should include specific questions around diagnosis experiences and navigating health and support systems. As outlined in Timeliness of dementia diagnosis, people living with younger onset dementia often face increased challenges in seeking a diagnosis and accessing services.
| Outcome | Initial data would provide data on the experiences of people living with dementia and their carers among priority population groups, and could identify:
Repeated data collections would assess changes following actions implemented from the NDAP. Data can be used to report on NDAP action 4: Improve dementia diagnosis and post-diagnostic care. |
|---|---|
| Level of investment | Medium–High: The level of investment will depend on the data collection methods. However, this activity will likely require in-person, over the phone or virtual interviews with people with dementia and collection of qualitative data. There may be broader options for collecting data from carers but need to consider preferences for engagement. Population-specific data collection requires greater resourcing and consultation. |
| Timeframe | Medium: This activity should be conducted periodically to collect data over time. |
| Responsible stakeholder | Academic researchers; organisations with experience in collecting data from people living with dementia and their carers; organisations with experience in collecting data among priority population groups |
| Progress | Not started. Pending sample size, current survey for activity 2c may be able to report experiences of carers of people living with younger onset dementia. |
Dementia awareness means knowing what dementia is and its symptoms and causes, who it can affect, how to delay its onset or slow its progression, and how it can be treated. The number of Australians living with dementia is projected to increase to over 1 million by 2065 (AIHW 2025), driving a need for dementia education to raise awareness, encourage preventive actions, address common misconceptions, and reduce stigma. Improving the general public’s knowledge and acceptance of dementia may help prevent or delay the onset of dementia, improve the support provided to people with dementia and their carers, improve timeliness of diagnosis and reduce dementia-related stigma.
Dementia is a stigmatised condition. Stigma is a complex social phenomenon where a social difference is identified, devalued, and discriminated against. Stigma involves negative beliefs (stereotypes) that manifest as negative emotional responses (prejudice) and negative behavioural responses (discrimination) (Alzheimer’s Disease International 2019). Dementia-related stigma can affect people with or without dementia and can be directed towards people with dementia as well as those close to them, such as carers and family. Dementia-related stigma can cause significant negative effects, such as low self-esteem, isolation, poor mental health and lower quality of life in people living with dementia (Burgener et al 2015, Livingston and Cooper 2013) and increased carer burden (Werner et al. 2012). Stigma can also prevent people from accessing health services, which delays diagnosis and treatment (Vernooij-Dassen et al. 2005; Alzheimer’s Disease International 2019; Nguyen & Li 2020, Werner & Kim, 2021).
Addressing the data gap and improving data
Understanding the Australian community’s knowledge and awareness of dementia, as well as attitudes towards dementia and people with dementia is important. This insight will help inform and evaluate plans and policies to reduce the risk of dementia and improve outcomes for people with dementia and their carers. Previous research suggests that many Australians do not recognise dementia as a health priority and have limited understanding of lifestyle behaviours that may reduce the risk of developing dementia (Smith et al. 2014). This includes information on the community’s awareness of what dementia is (including the conditions that cause dementia and the range of symptoms that may be present), as well as risk and protective factors for dementia (particularly modifiable factors).
The need and approach for awareness activities may vary for different communities including First Nations people and culturally and linguistically diverse (CALD) communities. The Let's CHAT (Community Health Approaches To) Dementia in Aboriginal and Torres Strait Islander Communities (University of Melbourne 2022) is a co-designed project working with 12 Aboriginal Community Controlled Health Services to improve dementia diagnosis and care and provides information about cultural differences in how dementia is understood, spoken about, experienced and responded to. Caring for Spirit provides First Nations people with culturally adapted online dementia resources (NeuRA 2023). Facing Dementia Together aims to increase public knowledge about the benefits of dementia diagnosis and treatment and services, in addition to decreasing stigma and increasing motivations and triggers for help-seeking. This includes providing culturally tailored resources to CALD communities to help them learn about dementia.
There is a lack of national data on dementia awareness and stigma in the population although smaller scaled surveys were conducted to explore Australians’ knowledge of and attitude towards dementia (Hosking et al 2015, Nagel et al 2021). National data on how people with dementia and their carers experience stigma are required to inform and evaluate strategies and policies aimed at reducing or eliminating stigma. These data are also needed to monitor outcomes of the National Dementia Action Plan (NDAP).
AIHW (Australian Institute of Health and Welfare) (2024) Dementia in Australia, AIHW, Australian Government, accessed 16 September 2025.
Alzheimer’s Disease International (2019) World Alzheimer report 2019: attitudes to dementia, ADI website, accessed 23 February 2023.
Burgener SC, Buckwalter K, Perkhounkova Y, Liu MF, Riley R, Einhorn CJ, Fitzsimmons S and Hahn-Swanson C (2015) ‘Perceived stigma in persons with early-stage dementia: longitudinal findings: part 1’, Dementia, 14(5):589–608, doi:10.1177/1471301213508399.
Hosking DE, Sargent-Cox K and Anstey KJ (2015) ‘An Australian survey of cognitive health beliefs, behaviours, and intentions through the adult life course'', Preventive Medicine Reports, 2:498–504, doi:10.1016/j.pmedr.2015.06.008.
Kim S, Anstey KJ and Mortby ME (2022) 'Who displays dementia-related stigma and what does the general public know about dementia? Findings from a nationally representative survey', Ageing & Mental Health, doi:10.1080/13607863.2022.2040428.
Livingston G and Cooper C (2013) ‘The need for dementia care services’, in de Waal H, Lyketsos C, Ames D and O’Brien J (eds) Designing and delivering dementia services, John Wiley & Sons, doi:10.1002/9781118378663.ch1.
Nagel AK, Loetscher T, Smith AE and Keage HA (2021) ‘What do the public really know about dementia and its risk factors?’, Dementia, 20(7):2424–2440, doi:10.1177/1471301221997301.
NeuRA (Neuroscience Research Australia) (2023) Caring for spirit, NeuRA website, accessed 31 July 2023.
Nguyen T and Li X (2020) ‘Understanding public-stigma and self-stigma in the context of dementia: a systematic review of the global literature’, Dementia, 19(2):148–181, doi:10.1177/1471301218800122.
Smith BJ, Ali S and Quach H (2014) ‘Public knowledge and beliefs about dementia risk reduction: a national survey of Australians’, BMC Public Health, 14:661, doi:10.1186/1471-2458-14-66.
University of Melbourne (2022) Let’s CHAT dementia in Aboriginal and Torres Strait Islander communities, University of Melbourne website, accessed 18 April 2023.
Vernooij-Dassen M, Moniz-Cook E, Woods R, De Lepeleire J, Leuschner A, Zanetti O, Rotrou J, Kenny G, Franco M, Peters V and Iliffe S (2005) ‘Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma’, International Journal of Geriatric Psychiatry, 20(4):377–386, doi:10.1002/GPS.1302.
Werner P and Kim S (2021) ‘A cross-national study of dementia stigma among the general public in Israel and Australia’, J Alzheimers Dis, 83:103–10, doi:10.3233/JAD-210277.
Werner P, Mittelman M, Goldstein D and Heinik J (2012) ‘Family stigma and caregiver burden in Alzheimer’s disease’, Gerontologist, 52(1):89–97, doi:10.1093/geront/gnr117.