2: Dementia awareness and stigma
Dementia awareness means knowing what dementia is and its symptoms and causes, who it can affect, knowing 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 double to almost 850,000 by 2058 (AIHW 2023), 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. 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 (Livingston and Cooper 2013) and increased carer burden (Werner et al. 2012). Stigma is the largest concern for people living with dementia (Alzheimer’s Australia WA 2015). Stigma can also prevent people from accessing health services, which delays diagnosis and treatment (Vernooij-Dassen et al. 2005; Alzheimer’s Disease International 2019).
Addressing the data gap and improving data
Understanding the Australian community’s knowledge and awareness of dementia, as well as attitudes towards people with dementia, 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 safe online dementia resources (NeuRA 2023).
There is a current lack of national data on dementia awareness and stigma in the population. 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).
Proposed data improvement activities
There are 4 main activities proposed to improve available data on dementia awareness and stigma in the population. These include activities to:
- conduct nationally representative survey/s of dementia awareness, risks and attitudes in the Australian community
- collect representative data on dementia awareness and attitudes among priority groups (including First Nations people and CALD groups)
- collect data on the experiences of people with dementia and their carers (including experience of stigma and discrimination and interactions with care providers)
- 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, priority rating, level of investment required, timeframe for completion of the activity and who is responsible for undertaking the activity.
This activity involves conducting a national survey on the public’s awareness of and attitudes towards dementia (including behaviours 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 provide data over time. This would enable examining trends over time.
Outcomes: 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
Priority: High
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 4 | 2 | 2 | 0 | 8 |
- Alignment: addresses a critical data gap on awareness, attitudes, and risks
- Foundational data: for baseline data
- Dependencies: none (the initial survey can be implemented to provide the baseline for subsequent surveys)
- Priority group reporting: unlikely
Level of investment: Low
Low investment is needed to conduct a single survey but continuous investment is needed for repeated surveys.
Timeframe: Short term (<2 years)
This activity has commenced and should be conducted every 3–5 years to collect data over time.
Responsible stakeholder: AIHW National Centre for Monitoring Dementia.
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 CALD groups. The sampling method, design and respondent engagement strategies would need to be designed to be culturally appropriate, recognising that different cultural attitudes around dementia will require different approaches. Activities should be designed to maximise participation and data collection from First Nations people and CALD groups and may involve the use of qualitative rather than quantitative data. For this reason, the activity could involve distinct projects for specific population groups. Data collection at subsequent time intervals would enable data and themes over time to be examined.
Outcomes: 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
Priority: High
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 4 | 2 | 1 | 1 | 8 |
- Alignment: addresses a critical data gap on awareness, attitudes, and risks
- Foundational data: for baseline data
- Dependencies: organisations with cultural expertise, relationships and contacts for priority groups required
- Priority group reporting: likely – specific for CALD or First Nations people
Level of investment:vHigh
CALD and First Nations people-specific data collection requires greater resourcing and consultation.
Timeframe: Medium term (2–6 years)
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.
This activity involves the collection of data on people with dementia and their carers. This may require multiple activities to understand a range of experiences such as stigma and discrimination related to dementia, 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.
Outcomes: Initial data would provide data on the experiences of people living with dementia and their carers and could identify:
- the types of discrimination experienced, to inform responses in the community, health, disability and aged care sectors
- the magnitude and cause of delays in a timely diagnosis, to inform improvements to diagnosis through both community and general practitioner (GP) awareness and health system factors
- experiences with service providers to inform changes needed to improve care and support for people living with dementia
Repeated data collections would measure changes following actions implemented from the NDAP.
Priority: High
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 4 | 2 | 1 | 0 | 7 |
- Alignment: addresses a critical data gap on awareness, attitudes and risks
- Foundational data: for baseline data
- Dependencies: organisations with dementia and/or carer expertise and contacts required
- Priority group reporting: unlikely – numbers likely too low for disaggregation
Level of investment: Medium–High
The level of investment will depend on the data collection methods. However, this activity will likely require in-person 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: Short term (<2 years)
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.
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 and interactions with care providers, timeliness and barriers to diagnosis, and experiences of the caring role.
The data collection methods and respondent engagement strategies would need to be designed to be culturally appropriate, recognising that different cultural attitudes around dementia will require different approaches. 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.
Outcomes: Initial data would provide data on the experiences of people living with dementia and their carers among priority population groups, and could identify:
- the types of discrimination experienced, to inform responses in the community, health and aged care sectors
- the magnitude and cause of delays in a timely diagnosis, to inform improvements to diagnosis through both community and GP awareness and health system factors
- experiences with service providers to inform changes needed to improve care and support for people living with dementia.
Repeated data collections would assess changes following actions implemented from the NDAP.
Priority: High
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 4 | 2 | 1 | 0 | 7 |
- Alignment: addresses data gap on awareness, attitudes and risks
- Foundational data: for baseline data but not incidence/ prevalence
- Dependencies: organisations with dementia and/or carer expertise and contacts required
- Priority group reporting: unlikely – numbers likely too low for disaggregation
Level of investment: Medium–High
The level of investment will depend on the data collection methods. However, this activity will likely require in-person 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: Short term (<2 years)
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.
AIHW (Australian Institute of Health and Welfare) (2023) Dementia in Australia, AIHW, Australian Government, accessed 23 February 2023.
Alzheimer’s Australia WA (2015) Dementia Friendly Communities Project: Creating a Dementia Friendly WA, Alzheimer’s Australia WA website, accessed 31 July 2023.
Alzheimer’s Disease International (2019) World Alzheimer Report 2019: Attitudes to dementia, ADI website, accessed 23 February 2023.
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.
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.
NeuRA (Neuroscience Research Australia) (2023) Caring for Spirit, NeuRA website, accessed 31 July 2023.
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, 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.