Skip to main content Accessibility help

We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.

Close cookie message
×
Hostname: page-component-cd9895bd7-dzt6s Total loading time: 0 Render date: 2024-12-26T05:12:49.231Z Has data issue: false hasContentIssue false

Chapter 2 - From History to Intervention

A Sociocultural Analysis of Dementia Stigma

Published online by Cambridge University Press:  26 May 2022

By
Perla Werner ,
Pieter Vermeulen ,
Baldwin Van Gorp  and
Peter Simonsen
Edited by
Mathieu Vandenbulcke ,
Rose-Marie Dröes  and
Erik Schokkaert
Mathieu Vandenbulcke
Affiliation:
KU Leuven, Belgium
Rose-Marie Dröes
Affiliation:
Amsterdam University Medical Centre
Erik Schokkaert
Affiliation:
KU Leuven, Belgium
Get access

Summary

Our knowledge of dementia stigma is still fairly limited, especially in comparison to stigma relating to mental illnesses. This chapter surveys existing scholarship and explores the historical roots of the concept of stigma and of the way different conceptions (biomedical, biopsychosocial, sociocultural and relational) of dementia generate and/or address stigma. It further identifies language, media and sociocultural structures as mechanisms that perpetuate public dementia stigma, before it turns to a number of domains in which dementia stigma can be addressed. In the domain of literature, destigmatizing efforts have attempted to generate empathy, an appreciation of complexity and insight into the condition of people living with dementia. Apart from contact-based and educational interventions, the chapter asserts that it is especially the development of 'counter-frames' that has the potential to unsettle negative perceptions of dementia. The chapter concludes by recognizing a number of methodological, conceptual and strategic challenges that complicate our evaluation of such strategies, or indeed our understanding of the complex phenomenon of dementia stigma itself.

Keywords

framesliteraturemediapersonhoodpublic stigmastereotypesstigma
Type
Chapter
Information
Dementia and Society , pp. 25 - 44
Publisher: Cambridge University Press
Print publication year: 2022

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Herrmann, LK, Welter, E, Leverenz, J, et al. A systematic review of dementia-related stigma research: Can we move the stigma dial? The American Journal of Geriatric Psychiatry 2018; 26: 316–31.CrossRefGoogle ScholarPubMed
Nguyen, T, Li, X. Understanding public-stigma and self-stigma in the context of dementia: A systematic review of the global literature. Dementia 2018; 19: 148–81.Google Scholar
Corrigan, PW, Kosyluk, KA. Mental illness stigma: Types, constructs, and vehicles for change. In Corrigan, PW, ed. The Stigma of Disease and Disability: Understanding Causes and Overcoming Injustices. Washington, DC, American Psychological Association, 2014; 35–56.CrossRefGoogle Scholar
Werner, P. Stigma and Alzheimer’s disease: A systematic review of evidence, theory, and methods. In Corrigan, PW, ed. The Stigma of Disease and Disability: Understanding Causes and Overcoming Injustices. Washington, DC, American Psychological Association, 2014; 223–44.Google Scholar
Werner, P, Kalaitzaki, AE, Spitzer, N, et al. Stigmatic beliefs towards persons with dementia: Comparing Israeli and Greek college students. International Psychogeriatrics 2019; 31: 1393–1401.Google Scholar
Stites, SD, Rubrighr, JD, Karlawish, J. What features of stigma do the public most commonly attribute to Alzheimer’s disease dementia? Results of a survey of the U.S. general public. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association 2018; 14: 925–32.CrossRefGoogle ScholarPubMed
Corrigan, PW, Green, A, Lundin, R, et al. Familiarity with and social distance from people who have serious mental illness. Psychiatric Services. 2001; 52: 953–8.CrossRefGoogle ScholarPubMed
Link, B, Cullen, F, Struening, E, et al. A modified labeling theory approach to mental disorders: An empirical assessment. American Sociological Review 1989; 54: 400–23.CrossRefGoogle Scholar
Kitwood, T. Dementia Reconsidered: The Person Comes First. Buckingham, Open University Press, 1995.Google Scholar
Van Gorp, B, Vercruysse, T. Frames and counter-frames giving meaning to dementia: A framing analysis of media content. Social Science & Medicine 2012; 74: 1274–81.CrossRefGoogle ScholarPubMed
Gerritsen, D, Oyebode, J, Gove, D. Ethical implications of the perception and portrayal of dementia. Dementia 2016; 17: 596–608.Google Scholar
Hillman, A, Latimer, J. Cultural representations of dementia. PLoS Medicine 2017; 14: e1002274.CrossRefGoogle ScholarPubMed
Young, JA, Lind, C, Orange, JB, Savundranayagam, MY. Expanding current understandings of epistemic injustice and dementia: Learning from stigma theory. Journal of Aging Studies 2019; 48: 76–84.CrossRefGoogle ScholarPubMed
Granello, DH, Gibbs, TA. The power of language and labels: ‘The mentally ill’ versus ‘people with mental illnesses’. Journal of Counseling & Development 2016; 94: 31–40.CrossRefGoogle Scholar
McParland, P, Kelly, F, Innes, A. Dichotomising dementia: Is there another way? Sociology of Health & Illness 2017; 39: 258–69.CrossRefGoogle ScholarPubMed
Zeilig, H. Dementia as a cultural metaphor. The Gerontologist 2013; 54: 258–67.Google ScholarPubMed
Werner, P, Raviv-Turgeman, L, Corrigan, PW. The influence of the age of dementia onset on college students’ stigmatic attributions towards a person with dementia. BMC Geriatr 2020; 20: 1–6.CrossRefGoogle ScholarPubMed
Higgs, P, Gilleard, C. Frailty, abjection and the ‘othering’ of the fourth age. Health Sociology Review 2014; 23: 10–19.CrossRefGoogle Scholar
Rowe, JW, Kahn, RL. Successful aging. The Gerontologist 1997; 37: 433–40.CrossRefGoogle ScholarPubMed
Kang, S, Gearhart, S, Bae, HS. 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. American Journal of Alzheimer’s Disease & Other Dementias 2010; 25: 687–97.CrossRefGoogle ScholarPubMed
Kessler, EM, Schwender, C. Giving dementia a face? The portrayal of older people with dementia in German weekly news magazines between the years 2000 and 2009. The Journals of Gerontology: Series B 2012; 67: 261–70.Google ScholarPubMed
Gerritsen, DL, Kuin, Y, Nijboer, J. Dementia in the movies: The clinical picture. Aging & Mental Health 2014; 18: 276–80.CrossRefGoogle ScholarPubMed
Cohen-Shalev, A, Marcus, E. An insider’s view of Alzheimer’s: Cinematic portrayals of the struggle for personhood. International Journal of Ageing and Later Life 2012; 7: 73–96.Google Scholar
Strier, R, Werner, P. Tracing stigma in long-term care insurance in Israel: Stakeholders’ views of policy implementation. Journal of Aging & Social Policy 2016; 28: 29–48.CrossRefGoogle ScholarPubMed
Werner, P, Doron, I. Alzheimer’s disease and the law: Positive and negative consequences of structural stigma and labeling in the legal system. Aging & Mental Health 2016: 21: 1206–13.Google ScholarPubMed
Stites, SD, Rubrighr, JD, Karlawish, J. What features of stigma do the public most commonly attribute to Alzheimer’s disease dementia? Results of a survey of the U.S. general public. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association 2018; 14: 925–32.CrossRefGoogle ScholarPubMed
Whitehead, A, Woods, A. Introduction. In Whitehead, A, Woods, A, eds. The Edinburgh Companion to the Medical Humanities. Edinburgh, Edinburgh University Press, 2016; 1–31.Google Scholar
Bleakley, A. Medical Humanities and Medical Education: How the Medical Humanities Can Shape Better Doctors. Abingdon, Routledge, 2015.CrossRefGoogle Scholar
Bladon, H. Using fiction to increase empathy and understanding in dementia care. Nursing Times 2019; 115: 47–9.Google Scholar
Vermeulen, P. Homo sacer/homo demens: The epistemology of dementia in contemporary literature and theory. In Krüger-Fürhoff, I, Schmidt, N, Vice, S, eds. The Politics of Dementia: Forgetting and Remembering the Violent Past in Literature, Film, and Graphic Narratives. Berlin, De Gruyter, 2020; 39–54.Google Scholar
Simonsen, P. The terror of dementia in Ian McEwan’s Saturday. In Chivers, S, Kriebernegg, U., eds. Care Home Stories: Aging, Disability, and Long-term Residential Care. Bielefeld, Transcript, 2017; 175–90.Google Scholar
Jamieson, S. Reading the spaces of age in Alice Munro’s ‘The bear came over the mountain’. Mosaic: An Interdisciplinary Critical Journal 2014, 47: 1–17.CrossRefGoogle Scholar
Simonsen, P. Livslange liv: Plejehjemsromaner og pensionsfortællinger fra velfærdsstaten. Odense, Syddansk Universitetsforlag, 2014.Google Scholar
Casey, B. Dementia and symbiosis in Waiting for Godot. In Maginess, T, ed. Dementia and Literature: Interdisciplinary Perspectives. Abingdon, Routledge, 2018; 37–52.Google Scholar
Maginess, T. Dementia and Literature: Interdisciplinary Perspectives. Abingdon, Routledge, 2018.Google Scholar
Swinnen, A, Schweda, M, eds. Popularizing Dementia: Public Expressions and Representations of Forgetfulness. Bielefeld, Transcript, 2015.Google Scholar
Swaffer, K. Foreword. In Maginess, T., ed. Dementia and Literature: Interdisciplinary Perspectives. Abingdon, Routledge, 2018; xi–xiii.Google Scholar
Devi, G. The Spectrum of Hope: An Optimistic and New Approach to Alzheimer’s Disease and Other Dementias. New York, Workman, 2017.Google Scholar
Rüsch, N, Xu, Z. Strategies to reduce mental illness stigma. In Gaebel, W, Rössler, W, Sartorius, N, eds. The Stigma of Mental Illness: End of the Story? Cham, Springer, 2017; 451–67.Google Scholar
Phillipson, L, Hall, D, Cridland, E, et al. Involvement of people with dementia in raising awareness and changing attitudes in a dementia friendly community pilot project. Dementia 2019; 18: 2679–94.CrossRefGoogle Scholar
Buckner, S, Darlington, N, Woodward, M, et al. Dementia friendly communities in England: A scoping study. International Journal of Geriatric Psychiatry 2019; 34: 1235–43.Google Scholar
Werner, P, Schifmann, KI, David, D, AboJabel, H. Newspaper coverage of Alzheimer’s disease: Comparing online newspapers in Hebrew and Arabic across time. Dementia 2019; 18: 1554–67.CrossRefGoogle ScholarPubMed
Werner, P, Schiffman, KI. Exposure to a national multimedia Alzheimer’s disease awareness campaign: Assessing stigmatic beliefs towards persons with the disease. Int J Geriatr Psychiatry 2918; 33: 336–42.Google Scholar
Haapala, I, Carr, A, Biggs, S. What you say and what I want: Priorities for public health campaigning and initiatives in relation to dementia. Australas J Ageing 2019; 38: 59–67.CrossRefGoogle ScholarPubMed
Fominaya, AW, Corrigan, PW, Rusch, N. The effects of pity on self- and other-perceptions of mental illness. Psychiatry Research 2016; 241: 159–64.CrossRefGoogle ScholarPubMed
Herrmann, LK, Welter, E, Leverenz, J, et al. A Systematic review of dementia-related stigma research: Can we move the stigma dial? The American Journal of Geriatric Psychiatry 2016: 26: 316–31.Google Scholar
Killick, J. Poetry and Dementia: A Practical Guide. London, Jessica Kingsley, 2018.Google Scholar
McParland, P, Kelly, F, Innes, A. Dichotomising dementia: Is there another way? Sociology of Health & Illness 2917; 39: 258–69.Google Scholar
Van Gorp, B, Vercruysse, T. Frames and counter-frames giving meaning to dementia: A framing analysis of media content. Social Science & Medicine 2012; 74: 1274–81.Google Scholar
Van Gorp, B, Vercruysse, T, Van den Bulck, J. Toward a more nuance perception of Alzheimer’s disease: Designing and testing a campaign advertisement. American Journal of Alzheimer’s Disease and Other Dementias 2012; 27: 388–96.Google Scholar
Cuadrado, F, Antolí, A, Rosal-Nadales, M, Moriana, JA. Giving meaning to Alzheimer’s disease: An experimental study using a framing approach. Health Communication 2020; 35: 447–55.Google Scholar
Whitehouse, PJ, George, D. The Myth of Alzheimer’s. New York, St. Martin’s Press, 2008.Google Scholar

Save book to Kindle

To save this book to your Kindle, first ensure [email protected] is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×