Perceptions of dementia are dependent on many factors, such as direct personal experience with a loved one having the condition or exposure to public information campaigns, for example. Popular culture also plays a role in shaping the public discourse around dementia in ways that can have significant consequences on the long run.
The World Alzheimer Report 2024 delved in depth into existing dementia awareness and stigma, through a groundbreaking global survey as well as essays examining diverse facets of this complex issue.
In this essay, which features in the World Alzheimer Report 2024: Global changes in attitudes to dementia, Professor Bianca Brijnath, the divisional director of Social Gerontology at the National Ageing Research Institute in Australia, and Professor Lee-Fay Low, a professor in ageing and health at the University of Sydney’s Faculty of Medicine and Health, delve into representations of dementia on television, social media, and the news, Brijnath and Low advocate for better media guidelines to tackle persistent stereotypes surrounding dementia.
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Where and when did you first become aware of the idea of ‘dementia?’ What feelings did ‘dementia’ invoke in you?
Unless we have a family member or close friend affected by dementia, our understanding of dementia is derived from popular culture including mass media – i.e., news, books, movies and social media. In our survey of Australians aged 45 and older, most people heard about dementia from family and friends, TV/radio and the internet (see Figure 1).
Many representations of dementia in popular culture reinforce stereotypes around ageing and care. Terms used in different languages to describe dementia are often pejorative, and loosely translate as “memory loss,” “tired brains,” “senility,” and “madness.” Such terminology creates the false impression that people living with dementia are diminished as people, cannot be trusted to make decisions for themselves, are dangerous and unruly, and may need sequestration from society. Cumulative impressions of dementia absorbed from popular culture can have a powerful impact on public knowledge and beliefs about dementia and dementia stigma. In this essay, we present some of the common dementia stereotypes in popular culture, their consequences on stigma, and ways we can counter these inaccurate narratives.
News depicts dementia as a biomedical disease, reporting breakthroughs and the need for lifestyle risk reduction
Most news stories frame dementia as a biomedical disease focusing on brain biology, with people living with dementia described as “patients” or “sufferers” rather than having agency. When stories of people with dementia are told, this tends to be through the views of professionals or carers. For example, in Irish newspapers between 2011–2017 there were 3,669 articles on dementia; of these, only 13 included the voice of the person with dementia themselves.
The good news is that, more recently, the depiction of dementia in the media may be changing, albeit differently by region. For example, in English language newspapers the number of stories with a negative tone has decreased (from 31% in 2014 to 19% in 2019). Similarly, in Norwegian newspapers, personhood framing is accompanying the biomedical lens and the number of articles on dementia in newspapers has increased from 1995 to 2015. In contrast, while there has been an increase in the number of articles on dementia in Chinese newspapers from 2005 to 2020, the most common word for dementia is still lao nian chi dai (年痴呆), which literally translates as “senile retardation” or “older person dummy disease.”
There have been increases in German, English, and Chinese news stories on dementia prevention. These stories place a strong emphasis on individual responsibility through promoting risk reduction through a healthy lifestyle – e.g. by following a Mediterranean diet, being physically active, socialising, challenging your brain, and consuming only small amounts of alcohol.
The news frequently reports on advances in drug treatments for Alzheimer’s disease, often heralding them as “groundbreaking,” “momentous,” and offering “new hope.” However, most treatments are not yet available publicly and may have narrow eligibility criteria. For example, anti-amyloid monoclonal antibodies such as Lecanemab remove beta-amyloid from the brain and slow cognitive decline but are only for people with very early Alzheimer’s disease, are expensive and complicated to deliver, and can lead to brain bleeds and brain swelling.
Similarly, pseudo-medicines without evidence, such as dietary supplements (e.g. Vitamin E) and other treatments (e.g. stem cell treatments), are advertised in mass media and through health blogs as being able to “cure” or “slow” dementia onset. Unrealistic expectations are subsequently created among people with dementia and carers, and frontline health providers may have the added workload of managing questions and expectations around new treatments and pseudo-medicines.
Dementia on social media includes voices of carers, but ‘dementia’ is also used as an insult
Social media allows for connection, information sharing and communication with others with similar interests or values. On X (formerly known as Twitter), dementia is mentioned in posts seven times more often than other neurological conditions (e.g. headache Parkinson’s disease, epilepsy). Of 398 tweets on dementia between January and February 2018, 9.2% were by a carer or a person living with dementia, 14.3% by advocacy organisations, 10.3% by health professionals, and 61.4% by the general public. Studies suggest that 9–40% of tweets are stigmatising (e.g. used negatively to denigrate). Dementia is often used as a political insult – e.g. to put down Donald Trump or Joe Biden.
Of the 100 most popular TikTok videos tagged with #dementia in June and July 2023, 65% were posted by family members, 18% by health professionals, and 2% by people living with dementia themselves.
Social media can be actively used to balance the depictions of dementia – for example, Canadian tweets posted during Canada’s Alzheimer’s Awareness Month 2022 related to dementia education and advocacy, fundraising and promotion, experiences of dementia – though there were also cursory – and negative or misinformative messages.
Dementia in fiction is associated with old age, decline, and negative emotions
Our review of depictions of dementia, including analyses of 39 books and film, found that people with dementia were almost always portrayed as being old and sad, often juxtaposed against their younger happier self. Almost all books and films had a narrative of progressive decline, institutionalisation and/or death, and were associated with feelings like fear and shame.
Meaningful relationships of people with dementia tend to be situated in the past, with the plotline focusing on recounting, then resolving a past trauma. Current relationships are characterised by power imbalances as people with dementia have memory difficulties, are confused, disoriented, and acting outside social norms. Future relationships and stories are rarely discussed, with the implicit assumption that there is no future, as the person’s dementia advances, the protagonist living with it will only experience profound anomie and alienation.
The depiction of dementia in popular culture may develop and reinforce stigma
The depiction of dementia in news, fiction, and social media may all contribute to ongoing stigma by modelling fear, shame, and avoidance of dementia, minimal inclusion of voices of people living with dementia, and dehumanising depictions of them, reinforcement of the stereotype of dementia as late-stage dementia. Dementia prevention coverage is often individualistic and Western-centric, without considering cultural, environmental, and socioeconomic barriers to risk reduction and may lead to lifestyle stigma, where it’s the individual’s fault if they develop dementia.
It has been asserted that raising awareness of dementia is crucial for tackling stigma. However, the proliferation of dementia awareness campaigns, including fear-based campaigns, may be increasing dementia worry and fear. Fear may in turn lead to greater social distancing from people with dementia as we try to avoid situations that make us feel uncomfortable.
Media guidelines may improve depiction of dementia
There are guidelines for media professionals on reporting sensitive subject matter such as mass shootings, terrorism, mental illness, and court cases. Media adherence to these guidelines can deliver positive social benefits. For example, the Mindframe national implementation of the suicide media guidelines in Australia is estimated to have reduced suicides and saved $596 million over five years.
We need to co-develop and implement media guidelines for dementia as one of a range of strategies to decrease dementia stigma. This starts by shining a light on stigmatising narratives and unintended consequences. It should no longer be acceptable to solely frame dementia as an epidemic, a killer that needs to be fought, and people with dementia as “the living dead” looked after by overburdened families.
Researchers and advocacy organisations putting out media releases need to consider the framing of dementia in the story. We all have a responsibility to support the inclusion of voices of people living with dementia and family, and to think more deeply about how collective media coverage of dementia may contribute to public stigma. The lived experiences of people with dementia and their families must be incorporated into stories to ensure accurate and balanced representations of dementia in everyday life. Thanks to Maria Maćkowiak and Zihan He for the examples of dementia depictions.
This essay, alongside many others can be found in our previous report:
World Alzheimer Report 2024: Global changes in attitudes to dementia,
This year, the World Alzheimer Report 2025 will be launched on 18 September.