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The social construction of dementia: Systematic review and metacognitive model of enculturation

      Highlights

      • Stigma is influenced by the way dementia has been represented through history.
      • The concepts of dementia are interpreted, assimilated or rejected by individuals.
      • Through enculturation the views on dementia are transmitted through generation.

      Abstract

      Background

      The stigma associated with dementia may be influenced by how the condition has been socially constructed throughout history.

      Objectives

      To conduct a systematic review tracing the historical representations of dementia, from the perspectives of cultural transmission theory and social constructivism.

      Methods

      A systematic search was run on five electronic databases: Wellcome Library, PsycINFO, CINAHL, IBSS, and EMBASE. Articles were screened and analysed through deductive content analysis. We further applied a communication system theory to graphically describe how dementia has been experienced through time.

      Results

      Ten primary sources and 33 secondary sources were consulted. Seven themes emerged from the analysis: a problem of aging; use it or lose it; divine punishment; loss of agency; psychosis and insanity; brain degeneration and objectification; and dementia as a social condition. Each theme corresponds to a particular way of conceptualising dementia and has influenced modern representations of the condition.

      Conclusion

      Past characterisations of dementia have influenced modern views of the condition. It is through enculturation that these views are interpreted, assimilated, or rejected by individuals and transmitted within and across cultures. A better understanding of the social construction of dementia can improve public health approaches to rehabilitation and care.

      Keywords

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      References

      1. World Health Organisation (WHO), Global Action Plan on the public health response to dementia 2017–2015. http://apps.who.int/iris/bitstream/handle/10665/259615/9789241513487-eng.pdf;jsessionid=F8822EDFC51F2544A66F76F5C235AA2C?sequence=1, 2017 (Accessed 23 September 2018).

        • Kane M.
        Ethnoculturally-sensitive practice and Alzheimer’s disease.
        Am. J. Alzheimer’s Dis. 2002; 15: 80-84
        • Shadlen M.
        • Larson E.B.
        Unique Features of Alzheimer’s Disease in Ethnic Minority Populations. Full-Color Aging.
        Gerontological Society of America, Washington, DC1999
        • Berrios G.E.
        • Porter R.
        A History of Clinical Psychiatry – The Origin and History of Psychiatric Disorders.
        (Athlone, London, 2009)1995: 34-71
        • Feldman H.
        Atlas of Alzheimer’s Disease.
        CRC Press, 2007
        • Boller F.
        • Forbes M.M.
        History of dementia and dementia in history: an overview.
        J. Neurol. Sci. 1998; 158: 125-133
        • Cavalli-Sforza L.L.
        • Feldman M.W.
        • Chen K.H.
        • Dornbusch S.M.
        Theory and observation in cultural transmission.
        Science. 1982; 218: 19-27
      2. Grusec J.E. Hastings P.D. Handbook of Socialization: Theory and Research. Guilford Publications, 2014
        • Mental Health Foundation (UK)
        Dementia, Rights, and the Social Model of Disability.
        2015 (Accessed 13 August 2018)
        • Lock M.
        The Alzheimer Conundrum: Entanglements of Dementia and Aging.
        Princeton University Press, Princeton, New Jersey and Woodstock, UK2013: 328
        • Beard L.R.
        Living with Alzheimer’s: Managing Memory Loss, Identity, and Illness.
        NYU Press, Paperback2016
        • Martin P.
        Culture, subculture and social organization.
        in: Bennett A. Kahn-Harris K. After Subculture: Critical Studies in Contemporary Youth Culture. Palgrave Macmillan, Houndmills2004: 21-35
        • Guba E.G.
        Criteria for assessing the trustworthiness of naturalistic inquiries.
        Educ. Commun. Technol. J. 1981; 29: 75-91
        • Lincoln Y.S.
        • Guba E.G.
        Naturalistic Inquiry.
        Sage, Beverly Hills1985
        • Patton M.Q.
        Qualitative Evaluation and Research Methods.
        Sage, Thousasnd Oaks, CA1990
        • Patton M.Q.
        Qualitative Research and Evaluation Methods.
        third ed. Sage, Thousand Oaks, CA2002
        • Thane P.
        The Long History of Old Age.
        2007
      3. CASP Checklist for Qualitative Studies.
        2017 (Accessed 2 August 2018)
        • Elo S.
        • Kyngas H.
        The qualitative content analysis process.
        J. Adv. Nurs. 2008; 62: 107-115https://doi.org/10.1111/j.1365-2648.2007.04569.x
        • Matsumoto D.
        Culture and Psychology.
        Brooks/ Cole, Pacific Grove, CA1996
        • Avruch K.
        Culture & Conflict Resolution. vol. 31. US Institute of Peace Press, 1998
      4. NVivo Qualitative Data Analysis Software.
        QSR International Pty Ltd, Melbourne, Australia2012
        • Von Bertalanffy L.
        General System Theory.
        (New York, 1968)1968: 40
        • Deetz S.A.
        Future of the discipline: the challenges, the research, and the social contribution.
        Ann. Int. Commun. Assoc. 1994; 17: 565-600
        • Cipriani G.
        • Dolciotti C.
        • Picchi L.
        • Bonuccelli U.
        Alzheimer and his disease: a brief history.
        Neurol. Sci. 2011; 32: 275-279https://doi.org/10.1007/s10072-010-0454-7
        • Poulakou‐Rebelakou E.
        • Kalantzis G.
        • Tsiamis C.
        • & Ploumpidis D.
        Dementia on the Byzantine throne (ad 330–1453).
        Geriatr. Gerontol. Int. 2012; 12 (2012): 405-412
        • Cokayne K.
        Experiencing Old Age in Ancient Rome.
        Routledge, London2003
        • Laertius D.
        Hicks R.D. Lives of Eminent Philosophers. Harvard University Press, Cambridge1972
        • Berchtold N.C.
        • Cotman C.W.
        Evolution in the conceptualization of dementia and Alzheimer’s disease: greco-roman period to the 1960s.
        Neurobiol. Aging. 1998; 19: 173-189
        • Rhodes P.J.
        • Leao D.F.
        The Laws of Solon: a New Edition With Introduction, Translation and Commentary.
        I. B. Tauris, 2016
        • Johnston I.
        Galen: On Diseases and Symptoms.
        Cambridge University Press, 2006
        • Ban A.T.
        Dementia: Differential Diagnosis. International Network for the History of Neuropsychopharmacology.
        1991: 1-28
      5. W. Shakespeare, Mr. William Shakespeares Comedies, Histories, & Tragedies: Published According to the True Originall Copies, Printed by Isaac Iaggard, and Ed[ward] Blount, London, 1623, p. 194. OCLC 606515358.

        • DeBaggio T.
        Losing My Mind: An Intimate Look at Life with Alzheimer’s.
        Simon and Schuster, 2002
      6. Winter Wind" in Something I’ve Been Meaning to Tell You, 1974, 192–206; in Family Portraits (1978), 57–67; in Literature in Canada (1978), 477–487.

      7. " Pictures of the Ice" in Atlantic Monthly (January 1990), 64–73 (originally created 1990);[7] in Friend of My Youth, 1990.

        • Goldman M.
        Forgotten: Narratives of Age-Related Dementia and Alzheimer’s Disease in Canada.
        McGill-Queen’s Press-MQUP, 2017
        • Cicero
        Cato Maior de Senectute.
        Loeb Classical Library, 1923 (DOI: 10.4159/DLCL.marcus_tullius_cicero-de_senectute.1923)
        • Alzheimers’ Australia
        Perceptions of Dementia in Ethnic Communities.
        Alzheimer’s Australia, 2008
        • Orrell M.
        • Sahakian B.
        Prevalence of Alzheimer’s disease and vascular dementia: association with education, the Rotterdam study.
        BMJ. 1995; 310: 951-952
        • Katzman R.
        Views and reviews: education and the prevalence of dementia and Alzheimer’s disease.
        Neurology. 1993; 43: 13-20
        • Katzman R.
        A neurologist’s view of Alzheimer’s disease and dementia.
        Int. Psychogeriatr. 2004; 16: 259-273
        • Stern Y.
        What is cognitive reserve? Theory and research application of the reserve concept.
        J. Int. Neuropsychol. Soc. 2002; 8: 448-460
        • Valenzuela M.J.
        Brain reserve and the prevention of dementia.
        Curr. Opin. Psychiatry. 2008; 21: 296-302
        • Bennett D.A.
        • Schneider J.A.
        • Bienias J.L.
        • Evans D.A.
        • Wilson R.S.
        Mild cognitive impairment is related to Alzheimer disease pathology and cerebral infarctions.
        Neurology. 2005; 64: 834-841
        • Koepsell T.D.
        • Kurland B.F.
        • Harel O.
        • Johnson E.A.
        • Zhou X.H.
        • Kukull W.A.
        Education, cognitive function, and severity of neuropathology in Alzheimer disease.
        Neurology. 2008; 70: 1732-1739
        • Roe C.M.
        • Xiong C.
        • Miller J.P.
        • Cairns N.J.
        • Morris J.C.
        Interaction of neuritic plaques and education predicts dementia.
        Alzheimer Dis. Assoc. Disord. 2008; 22: 188-193
        • Metzler I.
        A Social History of Disability in the Middle Ages: Cultural Considerations of Physical Impairment.
        Routledge, 2013
        • Beach T.G.
        The history of Alzheimer’s disease: three debates.
        J. Hist. Med. Allied Sci. 1987; 42: 327-349
        • Classen A.
        Old Age in the Middle Ages and the Renaissance: Interdisciplinary Approaches to a Neglected Topic.
        Walter de Gruyter, 2007
        • Bacon F.
        • Montagu B.
        The Works of Francis Bacon (Vol. 1).
        Parry & McMillan, 1857
        • Venzmer G.
        5000 Years of Medicine.
        Taplinger Publishing Co, New York1968
        • Gilleard C.
        Aging and old age in medieval society and the transition of modernity.
        J. Aging Identity. 2002; 7: 25-41
      8. K. Radde-Antweiler, H. Grünenthal, S. Gogolok, (2018). ‘Blogging Sometimes Leads to Dementia, Doesn't It?' The Roman Catholic Church in Times of Deep Mediatization, In Communicative Figurations, Palgrave Macmillan, Cham, 2018, pp. 267-286.

      9. Katholisches. (2015). Accessed: 30 March 2017. http://www.katholisches.info/2015/09/25/verbloggung-fuehrt-zur-verbloedung-kardinal-marx-ueber-katholische-kritik-am-kurs-der-deutschen-kirche/, 2015 (Accessed 13 July 2018).

        • Khan O.
        • Shah A.
        • Escudero S.L.Z.
        • Moriarty J.
        • Jutlla K.
        • Goodorally V.
        • et al.
        Dementia, Culture and Ethnicity: Issues for All.
        Jessica Kingsley Publishers, 2015
        • Uwakwe R.
        Knowledge of religious organizations about dementia and their role in care.
        Int. J. Geriatr. Psychiatry. 2000; 15: 1152-1153
        • Mkhonto F.
        • Hanssen I.
        When people with dementia are perceived as witches. Consequences for patients and nurse education in South Africa.
        J. Clin. Nurs. 2017; 30: 30
        • La Fontaine J.
        • Ahuja J.
        • Bradbury N.M.
        • Phillips S.
        • Oyebode J.R.
        Understanding dementia amongst people in minority ethnic and cultural groups.
        J. Adv. Nurs. 2007; 60: 605-614
        • Berrios G.E.
        Dementia during the seventeenth and eighteenth centuries: a conceptual history.
        Psychol. Med. 1987; 17: 829-837
        • Willis T.
        Practice of physick.
        in: Hunter R. Macalpaine I. Three Hundred Years of Psychiatry (1535–1860: A History Presented in Selected English Texts, Hartsdale. Carlisle Publishing, New York1684: 189-192 (1982)
        • Foerstl H.
        • Howard R.
        • Burns A.
        • Levy R.
        ’The strange mental state of an old man who thought he would be slaughtered’-an early report of dementia with delusion (1785).
        J. R. Soc. Med. 1991; 84 (1991): 432
        • Cullen W.
        First lines in the practice of physic.
        in: Hunter R. Macalpine, Three Hundred Years of Psychiatry (1535–1860): A History Presented in Selected English Texts. first ed. Hartsdale, Carlisle Publishing, New York1784: 473-479 (1982)
        • Berrios G.E.
        Alzheimer and the dementias.
        in: Freeman H. Royal Society of Medicine Services. 1991: 69-76
        • Higgs P.
        • Gilleard C.
        Fitness and consumerism in later life.
        in: Tulle E. Phoenix C. Physical Activity and Sport in Later Life: Critical Approaches. Palgrave Macmillan, Basingstoke2015
        • Forstl H.
        Uncommon causes of dementia: an historical account.
        Int. Psychogeriatr. 2005; 17: S3-S15https://doi.org/10.1017/S1041610205001754
        • Esquirol J.E.D.
        Des passions considérées comme causes, symptômes, et moyens curatifs de l’aliénation mentale, Impremeur de l’Ecole de medicine.
        Sorbonne. 1805;
        • Blumer G.A.
        The history and use of the term dementia.
        Am. J. Psychiatry. 1907; 63: 337-347
        • Hill S.A.
        • Laugharne R.
        Mania, dementia and melancholia in the 1870s: admissions to a Cornwall asylum.
        J. R. Soc. Med. 2003; 96: 361-363
        • Berrios G.E.
        Alzheimer’s disease: a conceptual history.
        Int. J. Geriatr. Psychiatry. 1990; 5: 355-365
        • Kraepelin E.
        Das Senile Und Pra¨senile Irresein. Eds. Psychiatrie: Ein Lehrbuch Fu¨r Studierende Und Arzte.
        Johann Ambrosius Barth, Leipzig1910: 533-632
      10. M. Foucault, History of Madness, Khalfa J, editor, translator & Murphy J, translator, Routledge, New York.

        • Eitner L.
        Gericault: His Life and Work.
        Orbis Publishing, London1983
      11. N. Nixon, (1983–1985), Museum of Modern Art, M.A.E. Boston.

        • Wilks S.
        Clinical notes on atrophy of the brain.
        J. Ment. Sci. 1864; 10: 10-19
      12. R.L.K. Virchow, Cellular pathology, Special ed., John Churchill, London, 1859, pp. 204-207.

        • Alzheimer A.
        Uber eine eigenartige Erkrankung der Hirnrinde.
        Allg. Z. Psychiat, Psych.-Gericht. Med. 1907; 64: 146-148
        • Lopez O.L.
        • McDade E.
        • Riverol M.
        • Becker J.T.
        Evolution of the diagnostic criteria for degenerative and cognitive disorders.
        Curr. Opin. Neurol. 2011; 24: 532
        • McKhann G.
        • Drachman D.
        • Folstein M.
        • Katzman R.
        • Price D.
        • Stadlan E.M.
        Clinical diagnosis of Alzheimer’s disease Report of the NINCDS‐ADRDA Work Group* under the auspices of Department of Health and Human Services Task Force on Alzheimer’s Disease.
        Neurology. 1984; 34 (939–939)
        • Raskind M.A.
        • Storrie M.C.
        Organic mental disorders.
        in: Busse E. Blazer D. Handbook of Geriatric Psychiatry. Van Nostrand Reinhold, New York1980
        • Pinner G.
        • Hillam J.
        • Branton T.
        • Ramakrishnan A.
        Faculty of the Psychiatry of Old Age of the Royal College of Psychiatrists, In-patient Care for Older People Within Mental Health Services.
        2011 (Accessed 21 August 2018)
        • Szasz T.S.
        The Manufacture of Madness: a Comparative Study of the Inquisition and the Mental Health Movement.
        Syracuse University Press, 1997
        • Goffman E.
        Asylums: Essays on the Social Situation of Mental Patients and Other Inmates.
        Routledge, 2017
        • Wing J.K.
        Comment on institutionalism and schizophrenia 30 years on.
        Br. J. Psychiatry. 1992; 160: 241-243
        • Davidge M.
        • Elias S.
        • Jayes B.
        • Wood K.
        • Yates J.
        Survey of English Mental Illness Hospitals. Prepared for the Mental Health Task Force.
        Inter-Authority Comparisons and Consultancy, Birmingham1993
        • Department of Health and Social Security
        The Respective Roles of the General Acute and Geriatric Sectors in Care of the Elderly Hospital Patient.
        DHSS, London1981
        • Kitwood T.
        On Being a Person. Dementia Reconsidered: The Person Comes First.
        1997: 7-19
        • Nolan M.R.
        • Brown J.
        • Davies S.
        • Nolan J.
        • Keady J.
        The Senses Framework: Improving Care for Older People Through a Relationship-centred Approach. Getting Research Into Practice (GRiP) Report No 2.
        2006
        • Ballenger J.
        Self, Senility and Alzheimer Disease in Modern America: A History.
        The Johns Hopkins University Press, Baltimore, MD2006
      13. J. Bowering. Work series on Portraits of dementia sufferers.

        • Sontag S.
        On Photography.
        Penguin, Harmondsworth, Middlesex1979
        • Thomas C.
        • Milligan C.
        How Can and Should UK Society Adjust to Dementia?.
        Joseph Rowntree Viewpoint, 2015
        • Adamson J.
        Awareness and understanding of dementia in African/Caribbean and South Asian families.
        Health Soc. Care Community. 2001; 9: 391-396
        • Hinton L.
        • Tran J.N.
        • Tran C.
        • Hinton D.
        Religious and spiritual dimensions of the Vietnamese dementia caregiving experience.
        Hallym. Int. J. Aging HIJA. 2008; 10: 139
        • Jett K.F.
        Mind-loss in the African American community: dementia as a normal part of aging.
        J. Aging Stud. 2006; 20: 1-10
        • Kontos P.
        • Martin W.
        Embodiment and dementia: exploring critical narratives of selfhood, surveillance, and dementia care.
        Dementia. 2013; 12: 288-302
        • Sweeting H.
        • Gilhooly M.
        Dementia and the phenomenon of social death.
        Sociol. Health Illn. 1997; 19: 93-117
        • Bar-On R.
        Emotional Intelligence and Self-Actualization. Emotional Intelligence in Everyday Life: A Scientific Inquiry.
        2001: 82-97
        • Hulko W.
        From ‘not a big deal’to ‘hellish’: experiences of older people with dementia.
        J. Aging Stud. 2009; 23: 131-144
        • Aldridge H.
        • Fisher P.
        • Laidlaw K.
        Experiences of shame for people with dementia: An Interpretative Phenomenological Analysis.
        Dementia. 2017; 1471301217732430
        • Swaffer K.
        Dementia: stigma, language, and dementia-friendly.
        Dementia. 2014; : 709-716
        • Sørensen E.
        • Torfing J.
        Network politics, political capital, and democracy.
        Int. J. Public Adm. 2003; 26: 609-634
        • Putnam R.D.
        Democracies in Flux: The Evolution of Social Capital in Contemporary Society.
        Oxford University Press, USA2002
        • Moher D.
        • Liberati A.
        • Tetzlaff J.
        • Altman D.G.
        Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.
        Br. Med. J. 2009; 339: 25-35
        • Heese K.
        Ageing, Dementia and Society–An Epistemological Perspective. 4. Springer Plus, 2015: 135 (1)
      14. Social Care Institute for Excellence, Co-Production in Social Care: What It Is and How to Do It.
        2013 (Accessed 24 June 2018)