Negative stereotypes, fear and social distance: a systematic review of depictions of dementia in popular culture in the context of stigma

BACKGROUND: Literature, film and news media reflect and shape social perceptions of dementia which in turn impact on dementia stigma. The aim of this paper is to systematically review papers on the depiction and frames for dementia in literature, film, mass media and social media in order to better understand cultural stigma related to dementia. METHODS: A systematic search of electronic databases was undertaken combining phrases relating to dementia, popular culture and representations, and phrases relating to dementia and stigma. We searched for scientific English language papers which included original analysis on the representation or depiction of dementia in popular culture (i.e. in film and television, literature, news, social media and language). Articles published between 1989–2018 were included. The search was conducted in December 2017 and updated in January 2019. Inductive thematic synthesis was undertaken. RESULTS: A total of 60 articles were included from an initial sample of 37022. Dementia was almost always depicted in conjunction with ageing, and often equated with Alzheimer’s disease. Common frames for dementia were biomedical - dementia involves the deterioration of the brain for which there is no current cure; natural disaster or epidemic - dementia is a force of nature which will overwhelm mankind; and living dead – people with dementia lose their brains, memories, minds and consequently their personhood and human rights. There were examples of more positive depictions of dementia including expressing love and individual agency and experiencing personal growth. Feelings commonly associated with dementia were fear, shame, compassion and guilt, and depictions often resulted in a sense of social distance. CONCLUSIONS: Depictions of dementia in popular culture are associated with negative images and feelings, and social distance between people with dementia and those without. These correspond to dementia stigma in the public and as experienced by people with dementia. Further research is needed into the impact of literature, news and social media on dementia stigma and these cultural mediums might be used to reduce stigma.