A large-scale thematic analysis of books, films, television programmes, social media, and news items, conducted in December 2017 and updated in January 2019, revealed several common themes in depictions of dementia that may perpetuate cultural stigma.

There is often an emphasis on the biomedical framing of the disease and brain deterioration, compared to a holistic view of how dementia changes the lived experience of the person. The address “person living with dementia” is preferable to “Alzheimer’s patient” because dementia is a long-term condition. It is more helpful to focus on living well with dementia after their diagnosis than focusing on their status as a patient, since there is currently no known cure for dementia.

Dementia is also often likened to a natural disaster or epidemic, using metaphors like “rising tide” and other apocalyptic terms. This enforces the view that dementia should be feared and that people living with dementia are passive victims of the condition, when in fact progression can be prevented with social interaction and cognitive engagement. The term “epidemic” also implies that dementia is contagious, which encourages misperception of dementia and avoidance of persons living with dementia.

This not only causes undue public fear of persons living with dementia, but it also ascribes blame to the person and undermines public awareness efforts of dementia prevention.

Other terms often used include “victims” or “sufferers”. These terms limit our view of people living with dementia to that of requiring pity or compassion, rather than being able to contribute meaningfully. Images used to depict dementia often portray persons with dementia as an ‘empty shell’ or as a disembodied set of hands, which dehumanises the person living with dementia and decreases emotional connection to them.

In a survey of persons living with mild dementia, 46% were reluctant to share their diagnosis because of concerns that they would be “talked about like they were not there” (Burgener and Buckwalter, 2018). When people do not understand dementia, they are more likely to exclude persons living with dementia from conversations and instead speak directly only to caregivers. Hence, we can expect that increasing public awareness will increase the inclusion of people living with dementia. 65% of visitors to the “People of Dementia” blog, which published personal stories of people living with dementia and how life was like for them before and after the diagnosis, agreed that they felt more comfortable interacting with persons living with dementia after reading the blog (Jamieson et al., 2017).