Background

Dementia stigma is a key concern of dementia advocacy [1]. Stigma is defined as negative stereotyped beliefs, feelings and behaviours [2,3,4]. Cultural stigma is society’s shared negative beliefs, prejudices and discriminatory structures [5]. Examples of dementia cultural stigma include public fear of dementia [6, 7], therapeutic nihilism [8] and locked dementia care units [9]. Dementia stigma contributes to delayed help-seeking [6, 7], a reluctance by health professionals to give a dementia diagnosis [10] and human rights violations of people with dementia [9]. Dementia stigma means that people with dementia frequently feel denied and ignored and experience discrimination in healthcare [1], perceived stigma by people with dementia is associated with depression, anxiety and lower self-esteem, personal control and activity participation [11] and with depression in care partners [12].

Culture is our learned system of shared ideas, rules and meaning that influence how we act on and view the world [13]. Popular culture is the set of practices, beliefs, and materials that embody the shared meanings of a social system and includes news and social media, books and television, and linguistic conventions [14]. Popular culture reflects and influences attitudes and behaviour, for example the #MeToo movement [15].

In order to be able to intervene to decrease dementia stigma, we need to understand cultural stigma related to dementia [5]. Current dementia awareness raising campaigns describe dementia biomedically or alternatively depict a highly positive image of living well with dementia. These may have unintended consequences of exacerbating stigma through highlighting the neuropathological ‘otherness’ of people with dementia, or by insufficiently showing the difficulties experienced by people with dementia so that those who did not live well might feel they have failed [16]. Pescolido et al. [17] suggest that the portrayal of dementia in the media influences and reflects cultural stigma. Stereotypes of dementia in the media are that people with dementia are old and severely impaired, passive, and have no quality of life [18, 19]. When news and entertainment media reinforce negative stereotypes, this perpetuates stigma [20].

Frame analysis is one method of describing cultural stigma. A frame is “a central organising idea or story line that provides meaning to an unfolding strip of events” ([21], 143) that impacts on how information is interpreted [22]. Frames may be suggested through slogans, analogies, pictures and connect the issue with deeper values [23].

This paper approaches the description of cultural stigma through the lens of popular culture. Our aim is to systematically review and synthesise research on the depiction of dementia in popular culture, focusing on the view of healthcare, humanities and social sciences. A qualitative systematic review of academic papers was chosen to bring together academic analysis across different types of media, as analysis of original sources over the many media types was assessed to be too broad in scope.

Methods

Scoping search

An initial search of Scopus was undertaken (search terms were ‘dementia and media’, and dementia and stigma) followed by an analysis of the title, abstracts, MESH and index terms of relevant articles. This was used to inform our final search terms.

Systematic search

A search was conducted in December 2017 and updated in January 2019. Databases searched were Scopus, PubMed, PsychInfo and Embase. Title, abstract and keyword searches were conducted, restricting results to English language articles, published between 1989 and 2018. This time period was chosen to capture the articles on the last two decades of media depictions because more recent media is more likely to impact on current perceptions of dementia. Search terms were chosen related to dementia and representation in film or artistic media, and dementia and stigma (see Fig. 1).

Fig. 1
figure 1

Flow chart indicating inclusion of articles in the review

Full size image

Search results were combined in Endnote and duplicates were removed. Both authors independently reviewed the titles and abstracts for inclusion. Full texts of potentially eligible papers were obtained and independently reviewed, with disagreements resolved through discussion. The reference lists of included articles, book chapters, and relevant reviews were hand searched.

Inclusion criteria

  1. (i)

    original analysis on the representation or depiction of dementia in popular culture (e.g. film, literature, social media, language) between 1970s and the present;

  2. (ii)

    research paper and not a review, book review or film review;

  3. (iii)

    full paper and not abstract or poster;

  4. (iv)

    published between 1989 and 2018;

  5. (v)

    written in English.

Data extraction

Descriptive data was extracted by one reviewer and checked by a second (see Table 1):

  1. 1)

    Authors, date, title and journal;

  2. 2)

    Material analysed (e.g. news websites, novels);

  3. 3)

    Country of origin of materials;

  4. 4)

    Analysis methods.

Table 1 Included articles
Full size table

A quality rating tool was not used as the criteria used to judge quality in health research are less appropriate indicators of quality in arts and media studies.

Analysis

Thematic synthesis of the whole text of included papers was undertaken [82] using NVIVO software. Both authors identified descriptions of dementia or themes (first-order data) and frames including values, assumptions, conceptualisations and cultural context underlying the semantic content as reported by paper authors (second-order data). Initial descriptive themes were identified independently by the two researchers, discussed and refined. Descriptive themes were jointly scrutinised to identify how dementia was being framed including the emotions elicited by those frames then all material was recoded into the agreed themes and frames. Saturation was reached, with no new themes or frames emerging in later coded articles.

Throughout the analysis we self-reflected and discussed our own assumptions and frames regarding dementia. These included the impact of our experiences as a psychologist in dementia research, and a health sociologist with minimal experience and pre-conceptions in relation to dementia.

Results

Characteristics of included papers

The search identified 37,022 articles, 95 full texts were obtained, 59 articles were determined as eligible, and an additional article was identified based on hand searching (see Fig. 1). The main reason for exclusion during the title and abstract screening was that papers were not about the representation of dementia. Reasons for exclusion from full-text results are depicted in Fig. 1.

The cultural material examined in included papers (see Table 1) were television and movies (9 papers), newspapers and television (6 papers), literature (5 papers), language (2 papers), and a mixture (3 papers). Two papers included material produced by people with dementia and care partners [38].

Analysis methods included quantitative coding of how dementia was depicted, used more commonly with news media [40, 60, 66, 67, 70], framing analysis [26, 32, 63, 69, 76], discourse analysis [71], and Foucauldian analysis [75]. Quantitative studies were more likely to describe their methods, whereas papers from arts and media disciplines were less likely to explicitly describe methodology. Hence, some papers provided inclusion criteria or justification and context for the material which was chosen for analysis, however many papers did not explain how or why material was selected. The majority of articles were published in ageing or mental health journals with a few in sociological and humanities journals.

Descriptive themes

The descriptive themes were that ageing and old age is depicted concurrently with dementia, dementia was often equated with Alzheimer’s disease, people with dementia were depicted as having memory difficulties, being disoriented, and experiencing decline and death, treatments or cure were not typically shown, and positive depictions of dementia occured rarely.

Ageing and old age is depicted concurrently with dementia

People with dementia were almost always portrayed as being old or ageing. For instance, Kessler’s 2012 quantitative analysis of 2604 photos in German weekly news magazines reported that judges (clinical psychologists) rated 46% of characters with dementia as “older than 80 years”, 43% as “between 60 and 80 years” and 2.9% as “younger than 60 years” [67].

The characteristics of ageing portrayed in relation to people with dementia were physical (wrinkles, grey hair, age spots, weakened, frail and vulnerable bodies, physical incapacity), social (retired, inactive, contributing less to society, having less friends), and psychological (living in the past, passivity). For example, in their descriptions of newspaper images accompanying newspaper stories on dementia Brookes et al. wrote: “The hands … reveal not only conspicuous features such as bruises and liver spots, but also creases and wrinkles in the skin and even the bones and joints beneath. These are images of vulnerability” [71].

In books and film, the decline with age of people with dementia was often emphasised through juxtaposition with more positive depictions of younger people, sometimes their younger selves.

Dementia is often equated with Alzheimer’s disease

Papers showed that Alzheimer’s was the most commonly depicted type of dementia [27, 34], and the media often used the terms dementia and Alzheimer’s interchangeably or together ([26, 64], Brookes et al. 2018).

The interchangeability of the terms dementia and Alzheimer’s disease was also apparent in the research papers themselves. The titles of 21 papers suggested that they focused on the depiction of Alzheimer’s disease [26, 27, 29, 32, 35, 38, 39, 42, 43, 46, 53, 63,64,65, 68,69,70, 72, 77, 80, 83]. However, some of these used the terms dementia and Alzheimer’s interchangeably (e.g [24, 32, 43, 69, 70]). The paper on “Alzheimer’s at the Movies”, as an illustration, included a film about Margaret Thatcher who had vascular dementia without mentioning this fact [42].

Other types of dementia were rarely mentioned in the reviewed papers. Of the 60 included papers, vascular dementia was mentioned in two papers [51, 59], Lewy body dementia in two papers [51, 66], and frontotemporal dementia in one paper [59].

Depiction of people with dementia

Memory difficulties were reported in every paper as a characteristic of people with dementia, often presented as an early symptom foreshadowing future difficulties. In the novel Iris [25], this was shown as forgetting to come out with the right words: “She suddenly finds it difficult in front of a large audience to come out with the words to reply to questions, something with which she has previously been quite at ease” ([25], p. 441). Gerritsen et al. [49] analysis of 23 fictional movies with a theme of dementia reports that 18 films showed memory problems, and 10 showed word finding difficulties.

Disorientation to time, place, or person was also commonly reported as a characteristic of people with dementia. They were depicted as being confused, thinking that the present is the past. Consequently, they were not able to find their way out of familiar places, not recognising familiar people, and getting lost. Gerritsen et al. [49] paper reported that 20 of 23 films showed disorientation to time, place or people.

People with dementia were also depicted as acting outside social norms, or in deviance [64]. Examples are: “walked into her office in pink pajamas and beige high heels” [63], “he cannot find his keys, he gets a hammer and screwdriver and prises the front door open” [25], and “Shigezo eats his wife’s ashes in the middle of the night” [41]. In response to these behaviours others were shown as reacting with indifference, shock, anger, aggression, and by shaming them. “When Grandma urinates on the carpet in his mother’s living room, Murat, his aunt and uncle respond with uncontrolled laughter” [43].

Books and films about dementia almost all told a story of progressive decline and death, ending in institutionalisation [25, 51, 52, 83], or the death of the person with dementia [28, 29, 34, 35, 41, 43, 44, 51, 53, 54, 58, 80]. Many books and films depicted the progression of declining ability to comprehend the world, and conduct self-care. Flashbacks were commonly used to show the person earlier in their life, emphasising losses and decline.

People with dementia were shown as wanting to die: “As a mother, I just want to die while I still remember my son.” [41]; or trying to kill themselves [31]. Correspondingly care partners were shown in constant bereavement [73]. Where the character with dementia was alive at the end of the story, the suggestion is that this is still the end of that person’s life narrative: “Death’s got the only door code out of Whernside Ward” [55].

Treatments or cure

Over 25 years of US television news, treatment was the top issue comprising 19.2% of all coverage [65]. People with dementia, nonetheless, were not shown typically shown as receiving treatments. In a review of 23 movies, only three characters are depicted as taking medications for dementia, albeit not accurately [40].

Positive depictions of dementia

There were reports of positive depictions of dementia, though these were in the minority in terms of numbers of academic publications and mentions within those publications.

Rather than suffering, people with dementia were depicted as being happy [46, 50], sometimes having forgotten all the bad memories or responsibilities of life [31, 59]. The most frequent emotional tone coded in 2012 photographs related to dementia from German Weekly news magazines was positive (32%), followed by neutral (27%) and negative (15%) [67].

People with dementia were shown as exercising agency. In 12 of 23 movies, the person with dementia is shown as having something to contribute socially [49]. Fictional characters were shown as solving crime cases [51], committing planned burglaries [52], starting new romantic relationships [44, 45], directing and performing in a play [44]. People with dementia including in the later stages of dementia were shown as expressing love through words, hugging, kissing and other physical signs of affection [24, 36, 47, 49]. Documentaries showed a prominent politician with dementia setting up a research foundation to research dementia, and people with dementia performing in a choir [50]. People with dementia were telling their own stories, and by describing their own experiences, contributing actively to discourse on dementia as well as demonstrating their personal agency and identity [38, 81].

People with dementia were also depicted as personally growing in that they develop socially, emotionally or spiritually [43]. For instance, they were dealing with grief at the loss of a spouse [59], overcoming prejudices [52], and embracing a previously rejected cultural heritage [39]. The writings of people with dementia include descriptions relating their personal journeys and shifts in outlook about themselves and dementia [38].

Frames for dementia

Frames for dementia were typically negative including the biomedical, natural disaster and epidemic, military and fighting, the living dead and burden of care frames. Dementia was also framed more neutrally with the alternative mind-body frame.

Biomedical frame

Dementia was commonly explained as a biomedical disease involving brain deterioration. This biomedical frame was often accompanied by digital illustrations of disintegrating heads or brains or neuroimaging scans, which serve to de-personalise the disease and emphasises a reductionist biological viewpoint [71]. Dementia the disease was presented as a complex scientific puzzle, that can only be addressed through research. Van Gorp and Vercruysse [76] describe this frame aligning with a community value of ‘faith in science’ wherein we trust in science and commit funding to research which offers the promise of a cure.

The biomedical frame was prominent in news coverage with scientists or doctors often featuring as experts [63, 74]. A review of 1393 news reports found that doctors and researchers were the most interviewed sources (39.8%), followed by patients/families (29.6%), politicians (12.4%), and other supporters (8.7%) [65].

Natural disaster and epidemic frames

Natural disaster and epidemic frames were also commonplace in news coverage of dementia. The rise in the global prevalence of dementia the disease was described as a force of nature which will overwhelm mankind. Terminology used includes “rising tide,” “dementia tsunami” and “silent epidemic” [68, 76, 77, 79]. The dementia disaster is vast “one of the greatest threats to humanity” [33] and “the disease of the century” [77]. Within this frame people with dementia were labelled as sufferers of unspeakable horror, passive victims of apocalyptic demography. ‘Epidemic’ suggests that dementia is contagious [51]. The natural disaster frame was often presented in conjunction with a biomedical frame with science to the rescue of the disaster.

Military and fighting frames

Dementia was personified as a killer - “deadly”, “claiming lives”, “responsible for deaths”, “inflicting a death toll”, ‘kills slowly”; “attacks speech and memory”, “invades the brain”, “strikes victims” [71, 77]. Public campaigns relating to dementia were described in similarly militaristic terms “Obama’s war on Alzheimer’s”, “Alzheimer’s Society: leading the fight against Alzheimer’s disease”, and “Fight Dementia Save Australia’ [49, 54, 78, 79]. In personal stories, people with dementia were sometimes represented as fighting their condition. For instance, in the Spanish documentary “Bicicleta, cullera, poma” former politician Maragall was depicted as an extraordinary hero who struggles to beat dementia [50].

Although the language suggested that the world was at war against dementia the disease, no examples were provided in included papers for victories in this war. Lane et al. [78] suggested that the military metaphor may be unhelpful in that someone who was not winning their individual battle against dementia may be perceived as not fighting hard enough or failing.

The living dead frame

People with dementia were depicted as the living dead consistent with the disease being a killer in entertainment and news media. Descriptions for dementia included ‘death before death’, ‘funeral that never ends’, ‘social death’, ‘psychological death’, ‘already dead’ ‘death that leaves the body behind’, ‘vegetable’, ‘there is nobody there’, and ‘withered shells ’[24, 34, 63, 64, 73]. Book titles included “Alzheimer’s Disease: Coping with a Living Death”, and “A Curious Kind of Widow: Loving a Man with Advanced Alzheimer’s” [26]. Interestingly, writing by people with dementia also included the living dead frame [38]. Following on from the notion that they are dead, people with dementia were also described as subhuman - ‘self that unbecomes’, ‘nonpersons’, ‘not human’ [35, 77].

She was just an animal. An animal with a stomach to be filled to continue alive, who needed to drink at least one litre of water a day, who defecated and urinated … (Barba 2004: 256–7, cited in [55].

The living dead frame was associated with a Western Cartesian hypercognitive view of the self. Western philosophy posits that mind and body were separate, with the mind being the seat of identity. When the brain/mind deteriorated, then the self deteriorated. Memories were a source of identity, so as memories were lost then so was personhood.

‘Without memory there are no experiences … there is nothing but void … the vacuum that is death’ ([84], p. 96 cited in [34].

As people with dementia lost their minds, they became crazy or mad. Even in cultures where mind-body dualism was not a dominant world view, dementia was still seen as a form of madness, such as in Asian and Middle Eastern cultures. ‘Chi Dai Zheng’ is the term for dementia used in China, Hong Kong and Singapore which has negative connotations of insane and idiotic [74]. Junun ‘atah was an Arabic term for dementia, which would mean losing one’s mind and for one to be acting in crazy ways [34].

A corollary of being seen as the living dead was that the viewpoint of the person with dementia was usually not depicted. An analysis of 25 articles on AD from high circulation Canadian print magazines found that almost nothing was presented from the perspective of, or about the needs of the person with dementia [63].

Consistent with people with dementia being depicted as not fully human, they were also shown as not having self-determination. Analysis of 50 articles from British magazines found that articles presumed that people with dementia were not autonomous agents who could make decisions without external influence [60]. In the films “Black Daisies” and “Mum” participants did not give informed consent regarding their participation [47, 55]. The ethics of releasing the film “The Iron Lady” (Margaret Thatcher) and the novel “Iris” (Iris Murdoch) while their central characters were still alive, but not able to consent or comment have been called into question [47, 48].

The reduction of the human rights in depictions of people with dementia included their right to life. This hermeneutical injustice was evident in standard texts on dementia [51]. People with dementia were shown as being killed by their loved ones in an act of ‘beneficent euthanasia’ because they would be ‘better off dead’ [77]. In Andrés Barba’s novel “Ahora tocad música de baile” Inés Fonseca, a character with later stage dementia was killed by her son. The reader was left to judge whether she has been murdered, assisted to die with dignity or sacrificed [35].

Burden of care frame

The stories in the majority of films and books were about the impact of dementia on the relationship between the person with dementia and their families, with the care partner sometimes depicted as the main protagonist [33, 47, 80]. A review of films found that most characters with dementia were unable to complete activities of daily living without assistance, with care partners bearing the burden of care [40]. Care partners were shown doing housework tasks, providing physical help with bathing, eating and toileting, and being ‘on watch’ constantly [32, 75]. Care partners were depicted as in a constant state of bereavement for the person who is already lost to them [73].

Alongside the personal stories of caring, were news descriptions of the economic and societal costs of care [80]. Media articles suggested there was a moral obligation to provide good care and that good care partners are brave, self-sacrificial and heroic [60, 75, 79].

Alternative frames

A few articles discussed the representations of dementia within a counter-frame of body-mind unity. Within this frame people with dementia engaged with the world through sensory and physical interactions and express themselves through their bodies – embodiment of experience. So rather than having lost self-identity and agency, their identity, emotional connections and influence on others were through the power of their bodies [59, 75]. For instance in the picture book La abuela necesita besitos (2011) by Ana Bergua, the grandmother with Alzheimer’s disease kissed and hugged her granddaughters and is emotionally connected with them [32]. Interestingly, this frame was shown in material from Indian, Japanese and Spanish cultures.

“In Japan, selves are understood to be formed out of interactions with others, exemplifying the so-called relational or sociocentric self. Furthermore, in Japan the self is understood to be defined not so much by one’s cognitive acuity but more by the embodied habits that allow the graceful performance of socialised selfhood “[59].

Feelings elicited by dementia depictions

The way dementia was depicted and framed elicited negative emotions and a sense of social distance between people with dementia and the audience.

Negative emotions

The common frames for dementia were depicted in association with negative emotions. Fear (terror, horror, dread) was the most common emotion associated with dementia for instance in relation to the living dead frame [26]. News reports described or implied that the public should be fearful of dementia the disease, sometimes with an ‘undercurrent of hysteria’ [79]. In books and film people with dementia and care partners were shown as frightened of the disease – they fear of loss of abilities, independence, memories, themselves, relationships, and the unknown.

“At night when it is total blackness, these absurd fears come. The comforting memories can’t be reached” Davies, 1989, cited in [24].

Shame was another emotion commonly shown in association with dementia. People with dementia were represented as ashamed of having dementia [28, 34, 48, 50, 51, 77] though the moral premises underpinning shame was not clear.

“He is not dying of Alzheimer’s disease, he’s dying of shame” (Reiter 1997 cited in ([77], p27).

Guilty, pity and compassion were other feelings related to dementia. Care partners were sometimes depicted as feeling guilt in relation to the care they provided or were expected to provide [25, 35, 60]. Pity and compassion were suggested as being elicited in relation to dementia [31, 71].

Social distance

Academics wrote that the way dementia was depicted increased affective and normative social distance. Affective social distance was higher when we felt less sympathetic understanding towards another, normative social distance was higher when distinctions between us (my in-group) and them (their out-group) were felt more strongly [85]. The biomedical and living dead frames for dementia distinguished between healthy and diseased brains, and human and subhuman, emphasising the otherness of people with dementia. This difference was increased through other ways. For instance in stock photographs of people with dementia commonly used in the press, images were selected in which the people with dementia were looking away from the viewer, or depicted as a set of disembodied hands which reduced the possibility for emotional connection [71]. Depictions of dementia which highlighted the oddities of their social behaviour (i.e. without allowing the viewer insight into the reasons behind those behaviours) also create a sense of distance [79]. The stories were not told from the viewpoint of the person with dementia [63], which also reduced the ability of the viewer to relate to people with dementia.

Discussion

This review found that the prevalent cultural depictions and frames around dementia were negative. The stereotypical depiction of a person of dementia was of an old person with Alzheimer’s disease, who loses their memory, mind and identity, behaves unpredictably and is suffering. This stereotype was framed so that the person is not fully human and does not have a voice. The societal narrative was that dementia is an overwhelming medical epidemic that brings a burden of care onto individual families, societies and governments. The predominant emotion associated with dementia was fear. Dementia was usually depicted in a way that generated social distance between those with dementia and the audience – ‘us’ and ‘them’. These depictions of dementia are consistent with stigma as observed or expressed in the public, health professionals and people with dementia [86]. The public is afraid of dementia, health professionals treat people with dementia with less respect after diagnosis and people with dementia experience ‘othering’ in society [1, 87]. These findings support the use of dementia language guidelines that suggest avoiding words like ‘sufferer’ and ‘demented’ (Dementia [88]).

Dementia, old age and symptoms of mental illnesses were regularly co-depicted. People with dementia may be additionally stigmatised because of this intersectionality. Ageist views are were that older people do not contribute and are a burden, mental health stigma includes stereotypes of violence and incompetence [89].

This review found that there were positive depictions of dementia, though these were less common. People with dementia were shown to be happy, exercise agency and experience personal growth. People with dementia were represented within a mind-body unity frame, consistent with notions of personhood and embodied selfhood [90]. Other counter-frames for dementia are that dementia is a natural part of ageing, carpe diem, family reciprocity of care, and a moral duty to provide loving care [76]. Dementia friendly communities present a positive frame by showing people with dementia actively participating in the movement, the dementia friendly approach has been shown to reduce stigma [91]. Other participatory approaches where people with dementia are seen as equal and active participants in the project have been shown to reduce stigma in others involved [92]. Dementia awareness campaigns should be considering and testing how dementia is framed within campaign messages in order to decrease stigma. The impact of positive frames on dementia stigma need to be investigated further.

Strengths of this paper are that we took a systematic approach (a health methodology) to synthesising findings from papers that used arts and health methodologies and that analysed a range of cultural media. It allowed us to produce a broad, novel, systematic description of cultural stigma of dementia. However, some of the papers were difficult to include within our review approach. For instance, many of the included papers did not explicitly state how material were selected or their analysis approach as this is not a convention in arts research. This made critique and commentary on methodology difficult. We were not able to analyse differences over time in cultural depictions, or differences in depiction by media type, genre (fiction versus non-fiction) and styles (realists, for instance). This kind of analysis was not possible due to the heterogeneity in the papers in the media types described and country/culture. Further the review was limited to English language papers, and has a Western bias, although there were some papers describing non-Western cultural media.

Future research may be able to link the depiction of dementia directly to measures of dementia stigma. It could also include searching of the arts and humanities literature, investigating depictions of dementia in social media and blogs, framing analysis, cross-media and cross-cultural comparisons, and investigation of changes in depictions over time. It would be helpful if future papers on depictions of dementia were contextualised within cultures and analysis approaches were explicitly stated. Experimental studies might test the depiction of dementia using alternate frames and the impact of exposure to these frames on attitudes, feelings and intended or actual behaviour towards people with dementia. Research also needs to be conducted on how to influence media portrayals of dementia (e.g. through media guidelines). The way that health and social care practitioners frame dementia during clinical and support interactions might impact on how people with dementia and care partners see themselves, this needs further investigation. The influence scientists and health professionals discourse in popular culture on dementia stigma could also be investigated.

Conclusion

In conclusion, depictions of dementia in popular culture including how dementia is framed may influence dementia stigma and needs to be considered when working to decrease dementia stigma. When talking about and depicting people with dementia, we need to be mindful about the social impact of the words, images and messages that we use.

“I repeat: “Please don’t call us sufferers” [93].