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The Alzheimer case: perceptions, knowledge and the acquisition of information about Alzheimer's disease by middle-aged and older adults in Flanders

Published online by Cambridge University Press:  07 October 2020

Martijn Huisman Open the ORCID record for Martijn Huisman [Opens in a new window] ,
Stijn Joye  and
Daniël Biltereyst
Martijn Huisman*
Affiliation:
Department of Communication Sciences, Ghent University, Ghent, Belgium
Stijn Joye
Affiliation:
Department of Communication Sciences, Ghent University, Ghent, Belgium
Daniël Biltereyst
Affiliation:
Department of Communication Sciences, Ghent University, Ghent, Belgium
*
*Corresponding author. Email: martijn.huisman@ugent.be
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Abstract

Alzheimer's disease (AD) is a major health concern as the world population ages. Yet, few studies have examined what the public over the age of 50 knows about AD. This qualitative study, based on 40 in-depth interviews, examines the knowledge of AD by Flemish people between 50 and 80 years old and their cross-source engagement with information sources. Building on AD media representations and theories on media complementarity and health information behaviour, we find that respondents mostly encounter AD information non-purposively via traditional mass media and interpersonal communication, while the internet is occasionally used to purposefully seek information. Novels, personal experiences/social proximity, public figures and particularly film stand out as channels and sources of AD information, suggesting that fictional narratives, personal experiences and being able to identify with others leave lasting impressions and help to communicate and disperse AD information. However, common misconceptions and gaps in knowledge persist, including AD being considered part of the normal ageing process and old age as well as confusing AD with Parkinson's disease. The biomedical perspective and the tragedy discourse prevail among the majority of respondents, who describe AD in terms of decline, loss and death and as ‘the beginning of the end’. Only a few, typically female respondents, appear aware of the role of individual health behaviour and lifestyle choices to prevent dementia or delay its onset. The misconceptions of AD and gaps in knowledge, as well as the fact that a third of all cases of dementia might be delayed or prevented by managing lifestyle and other risk factors, stress the importance of public educational programmes and the need to emphasise and raise awareness of preventative behaviour. Overall, the findings from this study can be of help to public health communicators and dementia-awareness campaigns, as well as AD training programmes for health-care professionals and family care-givers.

Keywords

Alzheimer's diseasemedia representationsknowledgehealth informationmedia complementaritymiddle-agedolder adultsFlanders
Type
Article
Information
Ageing & Society , Volume 42 , Issue 4 , April 2022 , pp. 918 - 937
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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References

Bailey, A, Dening, T and Harvey, K (2021) Battles and breakthroughs: representations of dementia in the British press. Ageing & Society 41, 362–376.CrossRefGoogle Scholar
Basting, AD (2009) Forget Memory: Creating Better Lives for People with Dementia. Baltimore, MD: Johns Hopkins University Press.Google Scholar
Behuniak, SM (2011) The living dead? The construction of people with Alzheimer's disease as zombies. Ageing & Society 31, 70–92.10.1017/S0144686X10000693CrossRefGoogle Scholar
Boyatzis, RE (1998) Transforming Qualitative Information: Thematic Analysis and Code Development. Thousand Oaks, CA: Sage.Google Scholar
Cahill, S, Pierce, M, Werner, P, Darley, A and Bobersky, A (2015) A systematic review of the public's knowledge and understanding of Alzheimer's disease and dementia. Alzheimer Disease & Associated Disorders 29, 255–275.CrossRefGoogle ScholarPubMed
Capstick, A, Chatwin, J and Ludwin, K (2015) Challenging representations of dementia in contemporary Western fiction film: from epistemic injustice to social participation. In Schweda, M and Swinnen, A (eds), Popularising Dementia: Public Expressions and Representations of Forgetfulness. Bielefeld, Germany: Transcript Press, pp. 229–252.CrossRefGoogle Scholar
Case, DO and Given, LM (2016) Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior, 4th Edn. Bingley, UK: Emerald.10.1108/S2055-53772016CrossRefGoogle Scholar
Cations, M, Radisic, G, Crotty, M and Laver, KE (2018) What does the general public understand about prevention and treatment of dementia? A systematic review of population-based surveys. PLOS ONE 13, e0196085.CrossRefGoogle ScholarPubMed
Clarke, JN (2006) The case of the missing person: Alzheimer's disease in mass print magazines 1991–2001. Health Communication 19, 269–276.10.1207/s15327027hc1903_9CrossRefGoogle ScholarPubMed
Cline, RJW (2011) Everyday interpersonal communication and health. In Thompson, TL, Parrott, R and Nussbaum, JF (eds), The Routledge Handbook of Health Communication, 2nd Edn. New York, NY: Routledge, pp. 377–396.Google Scholar
Dutta-Bergman, MJ (2004) Complementarity in consumption of news types across traditional and new media. Journal of Broadcasting & Electronic Media 48, 41–60.10.1207/s15506878jobem4801_3CrossRefGoogle Scholar
Gerritsen, DL, Kuin, Y and Nijboer, J (2014) Dementia in the movies: the clinical picture. Aging & Mental Health 18, 276–280.10.1080/13607863.2013.837150CrossRefGoogle ScholarPubMed
Hornik, RC, Parvanta, S, Mello, S, Freres, D, Kelly, B and Schwartz, JS (2013) Effects of scanning (routine health information exposure) on cancer screening and prevention behaviors in the general population. Journal of Health Communication 18, 1422–1435.10.1080/10810730.2013.798381CrossRefGoogle ScholarPubMed
Johnson, JD and Case, DO (2012) Health Information Seeking. New York, NY: Peter Lang.Google Scholar
Johnstone, MJ (2013) Alzheimer's Disease, Media Representations and the Politics of Euthanasia: Constructing Risk and Selling Death in an Ageing Society. Farnham, UK: Ashgate.Google Scholar
Kenigsberg, P-A, Aquino, J-P, Bérard, A, Gzil, F, Andrieu, S, Banerjee, S, Bremond, F, Buee, L, Cohen-Mansfield, J, Mangialasche, F, Platel, H, Salmon, E and Robert, P (2016) Dementia beyond 2025: knowledge and uncertainties. Dementia 15, 6–21.10.1177/1471301215574785CrossRefGoogle ScholarPubMed
Kessler, E and Schwender, C (2012) Giving dementia a face? The portrayal of older people with dementia in German weekly news magazines between the years 2000 and 2009. Journals of Gerontology: Psychological Sciences and Social Sciences 67B, 261–270.CrossRefGoogle Scholar
Kline, KN (2011) Popular media and health: images and effects. In Thompson, TL, Parrott, R and Nussbaum, JF (eds), The Routledge Handbook of Health Communication, 2nd Edn. New York, NY: Routledge, pp. 252–267.Google Scholar
Livingston, G, Sommerlad, A, Orgeta, V, Costafreda, SG, Huntley, J, Ames, D, Ballard, C, Banerjee, S, Burns, A, Cohen-Mansfield, J, Cooper, C, Fox, N, Gitlin, LN, Howard, R, Kales, HC, Larson, EB, Ritchie, K, Rockwood, K, Sampson, EL, Samus, Q, Schneider, LS, Selbæk, G, Teri, L and Mukadam, N (2017) Dementia prevention, intervention, and care. The Lancet 390, 2673–2734.10.1016/S0140-6736(17)31363-6CrossRefGoogle ScholarPubMed
McParland, P, Kelly, F and Innes, A (2017) Dichotomising dementia: is there another way? Sociology of Health & Illness 39, 258–269.10.1111/1467-9566.12438CrossRefGoogle ScholarPubMed
Medina, R (2018) Cinematic Representations of Alzheimer's Disease. London: Palgrave.10.1057/978-1-137-53371-5CrossRefGoogle Scholar
Mortelmans, D (2013) Handboek Kwalitatieve Onderzoeksmethoden [Handbook of Qualitative Research Methods]. Leuven, Belgium: Acco.Google Scholar
Peel, E (2014) ‘The living death of Alzheimer's’ versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse. Sociology of Health & Illness 36, 885–901.10.1111/1467-9566.12122CrossRefGoogle ScholarPubMed
Rains, SA (2007) Perceptions of traditional information sources and use of the World Wide Web to seek health information. Journal of Health Communication 12, 667–680.CrossRefGoogle ScholarPubMed
Rains, SA and Ruppel, EK (2016) Channel complementarity theory and the health information-seeking process: further investigating the implications of source characteristic complementarity. Communication Research 43, 232–252.CrossRefGoogle Scholar
Rimmer, E, Wojciechowska, M, Stave, C, Sganga, A and O'Connell, B (2005) Implications of the Facing Dementia Survey for the general population, patients and caregivers across Europe. International Journal of Clinical Practice 59, 17–24.10.1111/j.1368-504X.2005.00482.xCrossRefGoogle Scholar
Rubin, AM (2009) Uses-and-gratifications perspective on media effects. In Bryant, J and Oliver, MB (eds), Media Effects: Advances in Theory and Research, 3rd Edn. New York, NY: Routledge, pp. 165–184.Google Scholar
Ruppel, EK and Rains, SA (2012) Information sources and the health information-seeking process: an application and extension of channel complementarity theory. Communication Monographs 79, 385–405.CrossRefGoogle Scholar
Segers, K (2007) Degenerative dementias and their medical care in the movies. Alzheimer Disease & Associated Disorders 21, 55–59.CrossRefGoogle ScholarPubMed
Tian, Y and Robinson, JD (2008 a) Incidental health information use and media complementarity: a comparison of senior and non-senior cancer patients. Patient Education and Counseling 71, 340–344.CrossRefGoogle ScholarPubMed
Tian, Y and Robinson, JD (2008 b) Media use and health information seeking: an empirical test of complementarity theory. Health Communication 23, 184–190.CrossRefGoogle ScholarPubMed
Tian, Y and Robinson, JD (2009) Incidental health information use on the Internet. Health Communication 24, 41–49.10.1080/10410230802606984CrossRefGoogle ScholarPubMed
Van Gorp, B and Vercruysse, T (2012) Frames and counter-frames giving meaning to dementia: a framing analysis of media content. Social Science & Medicine 74, 1274–1281.10.1016/j.socscimed.2011.12.045CrossRefGoogle ScholarPubMed
World Health Organization (WHO) (2019) Dementia. Geneva: World Health Organization. Available at https://www.who.int/news-room/fact-sheets/detail/dementia.Google Scholar
Zeilig, H (2013) Dementia as a cultural metaphor. The Gerontologist 54, 258–267.10.1093/geront/gns203CrossRefGoogle ScholarPubMed