Background
Methods
Scoping search
Systematic search
Inclusion criteria
Data extraction
Author (year) | Title | Material analysed | Methods | Country or culture |
---|---|---|---|---|
Literature | ||||
1. Johnson (2000) [24] | Images of relational self: Personal experiences of dementia described in literature | 7 books, 48 articles written by the person diagnosed with Alzheimer’s or a care partner | Narrative analysis | Western |
2. Vassilas (2003) [25] | Dementia and literature | Books: J. Bernleff ‘s Out of Mind (1988), Michael Igniateff’s Scar Tissue (1993), John Bayley’s Iris (1999), Linda Grant’s Remind Me Who I Am (1998) | Netherlands, UA, UK, USA, | |
3. Behuniak (2011) [26] | The living dead? The construction of people with Alzheimer's disease as zombies | Books (multiple) | Analysis of ideas and themes- literature searched for references to seven zombie characteristics | Western |
4. Sakai, Carpenter,and Rieger (2012) [27] | “what's wrong with grandma?": Depictions of alzheimer's disease in children's storybooks. | 33 English-language children’s storybooks about AD | Information presented was coded | English language |
5. Goldman (2015) [28] | urging the world of the Whore and the horror: Gothic and apocalyptic portrayals of dementia in Canadian fiction. | Books: Michael Ignatieff’s Scar Tissue (1993), David Chariandy’s Soucouyant (1997) | Canada | |
6. Kruger-Furhoff (2015) [29] | Narrating the limits of narration: Alzheimer’s disease in contemporary literary texts | Books and short story: Thomas DeBaggio’s In Losing My Mind: An Intimate Look at Life with Alzheimer’s (2002), Jonathan Franzen’s My Father’s Brain (2001); Arno Geiger’s Der alte König in seinem Exil (The Old King in Exile, 2011), J. Bernlef’s Hersenschimmen (Out of Mind; 1987) | USA, USA,Austria, Netherlands | |
7. Sako and Falcus (2015) [30] | Dementia, care and time in post-war Japan: The Twilight Years, Memories of Tomorrow and Pecoross' Mother and Her Days | Books: Sawako Ariyoshi’s The Twilight Years (1972); Film: Yukihiko Tsutsumi’s Memories of Tomorrow (2006); Manga book: Yuichi Okano’s Pekorosu no Haha ni Ai ni Iku (Pecoross’ Mother and Her Days; 2012). | Japan | |
8. Wearing (2015) [31] | Deconstructing the American family: Figures of parents with dementia in Jonathan Franzen’s The Corrections and A.M. Homes’ May We Be Forgiven | Books: Jonathan Franzen’s The Corrections (2001), A.M. Homes’ May We Be Forgiven (2013) | USA | |
9. Cuadrado, Rosal, Moriana, and Antolí (2016) [32] | Alzheimer's disease representation in the Picture Books | Picture books for children (multiple) | Framing analysis | Spain |
10. L. Burke (2017) [33] | Missing pieces: Trauma, dementia and the ethics of reading in Elizabeth is missing | Books: Catherine Malabou’s (2012) The new wounded: From neurosis to brain damage and Emma Healey’s (2014) Elizabeth is missing | Comparative discussion | USA, UK |
11. Hussein (2017) [34] | Representations of dementia in Arabic literature | Novella: Ghazi Abdel- Rahman al- Qusaibi’s Alzheimer’s, Uqsusa (Alzheimer’s, a tale, 2010); Poetry collection: Hanadi Zarqa’s Alzheimer’s (2014) | Saudi Arabia, Syria | |
12. Raquel Medina (2017) [35] | Who speaks up for Inés Fonseca? Representing violence against vulnerable subjects and the ethics of care in fictional narrative about Alzheimer's disease: Ahora tocad música de baile (2004) by Andrés Barba. | Book: Andrés Barba’s Ahora tocad música de baile (Now play dance music, 2004) | Spain | |
13. Schilling (2017) [36] | Looking after Iris: John Bayley’s Elegy for the Living. | Book: John Bayley’s Elegy for Iris (1999) | UK | |
14. Simonhjell (2017) [37] | Beyond shadow and play. Different representations of dementia in contemporary Scandinavian literature | Book: Henning Mankell’s The troubled man (2011, Karl Ove Knausgård’s My struggle 1 (2012), Cecilie Enger’s My mother’s gifts (Mors gaver) (2013), Merethe Lindstrøm’ Dager i stillhetens historie (Days in the history of silencem, 2011), Sunniva Lye Axelsen’s Følge meg alle mine dager )Follow my all my days, 2011), Thomas Chr. Wyller’ En dements dagbok (A demented’s diary, 2013), Costance Ørbeck-Nilssen and Akin Duzakin’s, Jeg vil følge deg hjem (I’ll follow you home, 2015), Stian Holes’ Garmannssommer (Garman’s Summer, 2006). | Norway | |
15. Zimmermann (2017) [38] | Alzheimer's Disease Metaphors as Mirror and Lens to the Stigma of Dementia | Books by people with dementia or care partners: Jeanne Lee’s Just Love Me: My Life Turned Upside- Down by Alzheimer’s (2003), Floyd Skloot’s A World of Light (2005), Claude Couturier’s, in Puzzle: Journal d’une Alzheimer (Jigsaw: Diary of an Alzheimer’s patient, 2004), Thomas DeBaggio’s Losing My Mind: An Intimate Look at Life with Alzheimer’s (2002), Andrea Gillies’s Keeper: Living with Nancy—A Journey into Alzheimer’s (2009), Ruth Schäubli- Meyer’s Alzheimer: Wie will ich noch leben—wie sterben? (Alzheimer: How will I continue to live— how will I die? 2010), Diana Friel McGowin’s Living in the Labyrinth: A Personal Journey through the Maze of Alzheimer’s (1993) | Western | |
16. Venkatesan and Kasthuri (2018) [39] | Magic and Laughter": Graphic Medicine, Recasting Alzheimer Narratives and Dana Walrath's Aliceheimer's: Alzheimer's Through the Looking Glass | Book: Dana Walrath’s Aliceheimer’s: Alzheimer’s Through the Looking Glass (2016) | USA | |
Film and television | ||||
17. Segers (2007) [40] | Degenerative Dementias and Their Medical Care in the Movies | 24 fiction films, TV films, or shorts released before 2005 | Coded for each person with dementia name, age, sex, marital status, domestic situation (home alone, with a family member, or institutionalized), professional help at home, medical follow-up, and the use of medication, and scores on GDS, BEHAVE-AD | Majority from US but also included Italy, Japan, Argentina, Sweden, Netherlands, Belgium |
18. Asai, Sato, and Fukuyama (2009) [41] | An ethical and social examination of dementia as depicted in Japanese film | Films: Shirô Toyoda’s Koˆkotsu no hito (The Twilight Years, 1973) and Yukihiko Tsutsumi’s Ashita no kioku (Memories of Tomorrow, 2006) | Japan | |
19. Capp (2012) [42] | Alzheimer’s at the movies: A look at how dementia is Portrayed in Film and video | Films (multiple) | Western | |
20. Cohen-Shalev and Marcus (2012) [43] | An insider’s view of Alzheimer: cinematic portrayals of the struggle for personhood | Films: Nicolas Boukhrief’s Cortex (2008), Yesim Ustaoglu’s Pandora ‘ninkutusu (Pandora’s Box, 2008), Pedro Peirano and Sebastian Silva’s Gatos Viejos (Old Cats, 2010) | France, Turkey, Chile | |
21. Swinnen (2012) [44] | Everyone is Romeo and Juliet! Staging dementia in Wellkåmm to Verona by Suzanne Osten | Film: Suzanne Osten’s Wellkåmm to Verona (2006) | Sweden | |
22. Casado-Gual (2013) [45] | Unexpected turns in lifelong sentimental journeys: Redefining love, memory and old age through Alice Munro's 'The Bear Came Over the Mountain' and its film adaptation, Away from Her. | Short story: Alice Munro's The Bear Came Over the Mountain (2001) and film adaptation, Sarah Polley’s Away from Her (2007) | Spain | |
23. R. Medina (2013) [46] | Alzheimer's disease, a shifting paradigm in Spanish film: ¿Y tú quién eres? And Amanecer de un sueño | Films: Freddy Mas Franqueza’s Amanecer de un sueño, (2008), Antonio Mercero’s ¿Y tú quién eres? (2007) | Spain | |
24. Swinnen (2013) [47] | Dementia in documentary film: mum by Adelheid Roosen | Film: Adelheid Roosen’s Mum (2010) | Netherlands | |
25. Wearing (2013) [48] | Dementia and the biopolitics of the biopic: from Iris to The iron lady | Films: Richard Eyre’s Iris (2001) and Phyillida Loyd’s The Iron Lady (2011) | UK | |
26. Gerritsen, Kuin, and Nijboer (2014) [49] | Dementia in the movies: the clinical picture | 23 movies with release dates between January 2000 and March 2012 | USA, UK,Netherlands | |
27. Raquel Medina (2014) [50] | From the medicalisation of dementia to the politics of memory and identity in three Spanish documentary films: Bicicleta, cullera, poma, Las voces de la memoria and Bucarest: La memoria perduda | Films: Carles Bosch’s Bicicleta, cullera, poma (Bicycle, Apple, Spoon, 2010), Àlex Badia (co-director), Dani Fabra Las voces de la memoria (the voices of memory, 2011), Albert Solé’s Bucarest: la memòria perduda (Bucharest: Memory Lost, 2008) | Spain | |
28. Capstick, Chatwin, and Ludwin (2015) [51] | Challenging representations of dementia in contemporary Western fiction film: From epistemic injustice to social participation | Television series (2005-2011), and films (2001-2014) | Western | |
29. Capstick (2015) [51] | Intercorporeal relations and ethical perception Portrayals of Alzheimer’s disease in Away from Her and En sång för Martin. | Films: Sarah Polley’s Away from Her (2006), Bille August’s En sång för Martin (A Song for Martin 2001) | Canada, Sweden | |
30. Kamphof (2015) [52] | In the company of robots. Health care and the identity of people with dementia. | Film: Jake Schreie’s Robot & Frank (2012) | ||
31. Graham (2016) [53] | The voices of Iris: Cinematic representations of the aged woman and Alzheimer's disease in Iris (2001) | Film: Richard Eyre’s Iris (2001) | UK | |
32. Adelseck (2017) [54] | Losing one’s self: The depiction of female dementia sufferers in Iris (2001) and The Iron Lady (2011) | Films: Richard Eyre’s Iris (2001) and Phyillida Loyd’s The Iron Lady (2011) | UK | |
33. Byrne (2017) [55] | Representations of senescence in Tony Harrison's Black Daisies for the Bride. | Film-poem: Tony Harrison's Black Daisies for the Bride (1993) | UK | |
34. Jutel and Jutel (2017) [56] | 'Deal with It. Name It': the diagnostic moment in film | Films: Richard Glatzer and Wash Westmoreland’s Still Alice (2014) | Comparative textual analysis | USA |
35. Taylor (2017) [57] | Engaging with Dementia: Moral Experiments in Art and Friendship | Film: Richard Glatzer and Wash Westmoreland’s Still Alice (2014) | USA | |
36. Bloom (2018) [58] | Maternal Food Memories in Lin Cheng- sheng's 27°C: Loaf Rock and Eric Khoo's Recipe: A Film on Dementia | Films: Lin Cheng-sheng's 27°C: Loaf Rock (2013) and Eric Khoo's Recipe: A Film on Dementia (2013) | Taiwan, Singapore | |
37. Drott (2018) [59] | Aging bodies, minds and selves: Representations of senile dementia in Japanese film | Films: Hisako Matsui's Oriume (Broken Branch of Plum Blossoms; 2002), Hideki Wada’s Watashi no michi: Waga inochi no tango (My Way of Life; 2012), Hirokazu Kore-eda's film Wandafuru raifu (After Life, 1998), Azuma Morisaki’s Pekorosu no haha ni ai niiku (Pecoross' Mother and Her Days, 2013) | Japan | |
38. Inthorn (2018) [60] | Representations of intergenerational care on BBC children’s television | BBC children’s television involving children and their grandparents: Mr Alzheimer’s and Me (2015), Hope, Topsy and Tim (2013-) and Katie Morag (2013-14). | In-depth qualitative analysison whether show provided opportunities to learn the meaning of “good care” | UK |
39. Rincón, Cuevas, and Torregrosa (2018) [61] | The representation of personal memory in Alan Berliner’s First Cousin Once Removed | Film: Alan Berliner’s First Cousin Once Removed (2012) | USA | |
News media | ||||
40. McColgan, Valentine, and Downs (2000) [62] | Concluding narratives of a career with dementia: Accounts of Iris Murdoch at her death | 13 newspaper obituaries and other accounts after Iris Murdoch's death | Scotland | |
41. Clarke (2006) [63] | The case of the missing person: Alzheimer's disease in mass print magazines 1991-2001 | 25 articles on Alzheimer’s disease from high circulation print American and Canadian English- language magazines published in 1991, 1996, and 2001 | Analysis of the dominant discourse/frame used in the portrayal of the disease (i.e., the medical, political– economy, or lifestyle perspective) | USA and Canada |
42. Kirkman (2006) [64] | Dementia in the news: The media coverage of Alzheimer's disease | 1327 items from 15 New Zealand newspapers 1996 to 2002 | Interpretive approach that focused on the use of language, particularly in headlines, visual imagery and the major topics and actors receiving attention | New Zealand |
43. Kang, Gearhart, and Bae (2010) [65] | Coverage of Alzheimer's disease from 1984 to 2008 in television news and information talk shows in the United States: An analysis of news framing | Television: 1371 TV news transcripts on Alzheimer’s disease (AD) from 6 TV news networks during a 25- year period (1984-2008) | Constant comparative method | Western |
44. Doyle et al. (2012) [66] | Media reports on dementia: quality and type of messages in Australian media | Australian newpapers, television and radio 1129 items from 1 March 2000 to 28 February 2001 and 1129 items from 1 September 2006 to 31 August 2007 | Extracted identifying and descriptive information based on the media guidelines for reporting suicide and mental illness | Australia |
45. Kessler and Schwender (2012) [67] | Giving dementia a face? The portrayal of older people with dementia in German weekly news magazines between the years 2000 and 2009 | 60 articles containing 122 photos depicting 154 people with dementia and 95 social partners from German weekly newspaper magazines 2000-2009 | Characters with dementia in the photos rated according to age, gender, emotional expression, physical functioning, physical surroundings, and social context. | Germany |
46. Peel (2014) [68] | The living death of Alzheimer's' versus 'Take a walk to keep dementia at bay': representations of dementia in print media and carer discourse | 350 articles from British print media 1 October 2010 to 30 September 2011 | Social constructionist approach to the newspaper coverage | UK |
47. Cuijper and Van Lente (2015) [69] | The meanings of early diagnostics for Alzheimer’s disease in Dutch newspapers: A framing analysis. | 100 articles addressing Alzheimer’s disease or dementia and early diagnosis or early diagnostic instruments in Dutch national newspapers published between January 1995 and January 2010 | Framing analysis | Netherlands |
48. Inthorn and Inthorn (2015) [60] | Respect for autonomy? The contribution of popular magazines to the public understanding of dementia care | 50 articles published in the British magazines Saga Magazine, Yours, and Choice between 1 January and 31 August 2013 | Analysis on whether persons with dementia are shown to be making decisions free from external influence from family members, medical experts, or others | UK |
49. Werner, Schiffman, David, and Abojabel (2017) [70] | Newspaper coverage of Alzheimer's disease: Comparing online newspapers in Hebrew and Arabic across time. | 180 articles published in seven national online newspapers (4 Hebrew, 3 Arabic) between 2010–2011 and 2014–2015 | Information coded about objective characteristics of the articles as well as regarding the portrayal of the disease and of persons with AD | Israel |
50. Brookes, Harvey, Chadborn, and Dening (2018) [71] | “Our biggest killer”: multimodal discourse representations of dementia in the British press | 11 articles from 10 UK national published on 14-15 November 2016 covering British Office for National Statistics press bulletin that dementia had replaced cancer and heart disease as “the leading cause of death in England and Wales” | Multimodal approach to critical discourse analysis (CDA) | UK |
Social Media | ||||
51. Oscar et al. (2017) [72] | Machine Learning, Sentiment Analysis, and Tweets: An Examination of Alzheimer's Disease Stigma on Twitter | 31,150 English language tweets, collected continuously for 10 days in early 2014 | English-speaking | |
Language | ||||
52. George (2010) [73] | Overcoming the social death of dementia through language | Language | Western | |
53. Chiu et al. (2014) [74] | Renaming dementia - An East Asian perspective | Language – words for dementia | Asia | |
Mixed media | ||||
54. Brijnath and Manderson (2008) [75] | Discipline in chaos: Foucault, dementia and aging in India | Indian-English media, film: Sanjay Leela Bhansali’s Black (2005) | Application of Foucauldian theory | India |
55. Van Gorp and Vercruysse (2012) [76] | Frames and counter-frames giving meaning to dementia: A framing analysis of media content | Books (20), audiovisual material (14), public health care brochures (15) from Belgium, and 552 articles, 58% in Dutch and 42% in French from Belgian newspapers between March 1st 2008 and July 1st 2010. | Inductive framing analysis | Belgium |
56. Johnstone (2013) [77] | Alzheimer's disease, media representations, and the politics of euthanasia: Constructing risk and selling death in an ageing society | News, film (multiple) | Western (majority Australian examples) | |
57. Lane, McLachlan, and Philip (2013) [78] | The war against dementia: are we battle weary yet | Mixed | Western | |
58. Zeilig (2014) [79] | Dementia as a cultural metaphor | Newspaper accounts, political speeches, and documentary and feature films | Western | |
59. Lucy Burke (2015) [80] | The locus of our dis-ease:: Narratives of family life in the age of Alzheimer’s | Government communications regarding dementia; book: Margaret Forster’s Have the Men Had Enough? (1989) | UK | |
60. Zeilig (2015) [81] | What do we mean when we talk about dementia? Exploring cultural representations of dementia | Media reports, films: Mike Leigh’s High Hopes (1988), Ashgar Farhadi’s A Separation (2011) | UK, Iran |
Analysis
Results
Characteristics of included papers
Descriptive themes
Ageing and old age is depicted concurrently with dementia
Dementia is often equated with Alzheimer’s disease
Depiction of people with dementia
Treatments or cure
Positive depictions of dementia
Frames for dementia
Biomedical frame
Natural disaster and epidemic frames
Military and fighting frames
The living dead frame
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].
Burden of care frame
Alternative frames
“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
Negative emotions
“At night when it is total blackness, these absurd fears come. The comforting memories can’t be reached” Davies, 1989, cited in [24].
“He is not dying of Alzheimer’s disease, he’s dying of shame” (Reiter 1997 cited in ([77], p27).
Social distance
Discussion
Conclusion
“I repeat: “Please don’t call us sufferers” [93].