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.