Skip to main content Accessibility help
×
Hostname: page-component-cd9895bd7-hc48f Total loading time: 0 Render date: 2024-12-26T04:15:28.536Z Has data issue: false hasContentIssue false

Chapter 1 - Different Perspectives on Dementia

Published online by Cambridge University Press:  26 May 2022

Mathieu Vandenbulcke
Affiliation:
KU Leuven, Belgium
Rose-Marie Dröes
Affiliation:
Amsterdam University Medical Centre
Erik Schokkaert
Affiliation:
KU Leuven, Belgium
Get access

Summary

Cognitive failure and the fear of losing control over one’s life has occupied mankind for centuries. In our chapter we describe the conceptual history of dementia starting with the first written traces from the twenty-fourth century BCE, relating the story of an Egyptian officer who not only developed the inability to remember yesterday but also became more and more childish. Subsequently, we summarize medical discoveries that have allowed cognitive, psychological and behavioral symptoms of dementia to be viewed as a result of brain disease rather than, for instance, witchcraft or ill will. In the context of growing awareness of neuro-pathophysiological mechanisms underlying dementia, associated with postmortem brain research in the late ninettenth century, Alzheimer’s disease became the ‘face’ of dementia for some time. We discuss further developments in the discovery and in the treatment of different types of dementia, also focusing on psychosocial aspects of the disease. These became an important topic of research as pharmacological treatments aimed at curing the neurodegenerative causes of dementia as yet do not exist. AWe compare how different cultures and societies deal with dementia. Finally, the political and societal attempts to promote social inclusion and empowerment of individuals with dementia are summarized.

Type
Chapter
Information
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

Smith, M, Atkin, A, Cutler, C. An age old problem? Estimating the impact of dementia on past human populations. J Aging Health 2017; 29: 6898.CrossRefGoogle ScholarPubMed
Papavramidou, N. The ancient history of dementia. Neurol Sci 2018; 39: 2011–16.CrossRefGoogle ScholarPubMed
Berchtold, NC, Cotman, CW. Evolution in the conceptualization of dementia and Alzheimer’s disease: Greco-Roman period to the 1960s. Neurobiol Aging 1998; 19: 173–89.CrossRefGoogle ScholarPubMed
Fotuhi, M, Hachinski, V, Whitehouse, PJ. Changing perspectives regarding late-life dementia. Nat Rev Neurol 2009; 5: 649–58.Google Scholar
Cipriani, G, Danti, S, Carlesi, C. Three men in a (same) boat: Alzheimer, Pick, Lewy. Historical notes. Eur Geriatr Med 2016; 7: 526–30.CrossRefGoogle Scholar
Blessed, G, Tomlinson, BE, Roth, M. The association between quantitative measures of dementia and of senile change in the cerebral grey matter of elderly subjects. Br J Psychiatry 1968; 114: 797811.CrossRefGoogle ScholarPubMed
Bielschowsky, M. Zur Kenntnis der Alzheimerschen krankheit (präsenilen Demenz mit Herdsymptomen). J Psychol Neurol 1911; 18: 120.Google Scholar
Schachter, AS, Davis, KL. Alzheimer’s disease. Dialogues Clin Neurosci 2000; 2: 91100.CrossRefGoogle ScholarPubMed
Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Washington, DC, American Psychiatric Association, 2013.Google Scholar
Knopman, DS, Beiser, A, Machulda, MM, Fields, J, Roberts, RO, Pankratz, VS, … Petersen, RC. Spectrum of cognition short of dementia: Framingham Heart Study and Mayo Clinic Study of Aging. Neurology 2015; 85: 1712–21.Google Scholar
Petersen, RC, Caracciolo, B, Brayne, C, Gauthier, S, Jelic, V, Fratiglioni, L. Mild cognitive impairment: A concept in evolution. J Intern Med 2014; 275: 214–28.Google Scholar
Busse, A, Hensel, A, Guhne, U, Angermeyer, MC, Riedel-Heller, SG. Mild cognitive impairment: Long-term course of four clinical subtypes. Neurology 2006; 67: 2176–85.Google Scholar
Ganguli, M, Snitz, BE, Saxton, JA, Chang, CC, Lee, CW, Vander Bilt, J, … Petersen, RC. Outcomes of mild cognitive impairment by definition: A population study. Arch Neurol 2011; 68: 761–7.Google Scholar
Fischer, P, Jungwirth, S, Zehetmayer, S, Weissgram, S, Hoenigschnabl, S, Gelpi, E, … Tragl, KH. Conversion from subtypes of mild cognitive impairment to Alzheimer dementia. Neurology 2007; 68: 288–91.CrossRefGoogle ScholarPubMed
Chen, P, Ratcliff, G, Belle, SH, Cauley, JA, DeKosky, ST, Ganguli, M. Patterns of cognitive decline in presymptomatic Alzheimer disease: A prospective community study. Arch Gen Psychiatry 2001; 58: 853–8.Google Scholar
Blazer, D. Neurocognitive disorders in DSM-5. Am J Psychiatry 2013; 170: 585–7.CrossRefGoogle ScholarPubMed
Rabins, PV, Lyketsos, CG. A commentary on the proposed DSM revision regarding the classification of cognitive disorders. Am J Geriatr Psychiatry 2011; 19: 201–4.CrossRefGoogle ScholarPubMed
George, DR, Whitehouse, PJ, Ballenger, J. The evolving classification of dementia: Placing the DSM-V in a meaningful historical and cultural context and pondering the future of ‘Alzheimer’s’. Cult Med Psychiatry 2011; 35: 417–35.CrossRefGoogle Scholar
Jones, T, Hungerford, C, Cleary, M. Pharmacological versus non-pharmacological approaches to managing challenging behaviours for people with dementia. Br J Community Nurs 2014; 19: 72–7.Google ScholarPubMed
Taft, LB, Fazio, S, Seman, D, Stansell, J. A psychosocial model of dementia care: Theoretical and empirical support. Arch Psychiatr Nurs 1997; 11: 1320.CrossRefGoogle ScholarPubMed
Finnema, E, Droes, RM, Ribbe, M, van Tilburg, W. A review of psychosocial models in psychogeriatrics: Implications for care and research. Alzheimer Dis Assoc Disord 2000; 14: 6880.CrossRefGoogle ScholarPubMed
Engel, GL. The need for a new medical model: A challenge for biomedicine. Sci 1977; 196: 129–36.Google Scholar
Rabins, PV, Lyketsos, CG, Steele, CD. Practical dementia care. UK, Oxford University Press, 2006.Google Scholar
Samus, QM, Johnston, D, Black, BS, Hess, E, Lyman, C, Vavilikolanu, A, Lyketsos, CG. A multidimensional home-based care coordination intervention for elders with memory disorders: The Maximizing Independence at Home (MIND) pilot randomized trial. Am J Geriatr Psychiatry 2014; 22: 398414.CrossRefGoogle ScholarPubMed
Spector, A, Orrell, M. Using a biopsychosocial model of dementia as a tool to guide clinical practice. Int Psychogeriatr 2010; 22: 957–65.Google Scholar
Revolta, C, Orrell, M, Spector, A. The biopsychosocial (BPS) model of dementia as a tool for clinical practice. A pilot study. Int Psychogeriatr 2016; 28: 1079–89.CrossRefGoogle ScholarPubMed
Kitwood, T. The dialectics of dementia: With particular reference to Alzheimer’s disease. Ageing Soc 1990; 10: 177–96.CrossRefGoogle Scholar
Hadas, R. Strange Relation: A Memoir of Marriage, Dementia and Poetry. Philadelphia, Paul Dry Books, 2011.Google Scholar
Kitwood, T. The experience of dementia. Aging Ment Health 1997; 1: 1322.CrossRefGoogle Scholar
Kitwood, T, Bredin, K. Towards a theory of dementia care: Personhood and well-being. Ageing Soc 1992; 12: 269–87.CrossRefGoogle ScholarPubMed
Mitchell, G, Agnelli, J. Person-centred care for people with dementia: Kitwood reconsidered. Nurs Stand 2015; 30: 4650.CrossRefGoogle ScholarPubMed
Sabat, SR, Harré, R. The construction and deconstruction of self in Alzheimer’s disease. Ageing Soc 1992; 12: 443–61.Google Scholar
Snyder, L. Speaking Our Minds: Personal Reflections from Individuals with Alzheimer’s. New York, Freeman, 1999.Google Scholar
Epp, TD. Person-centred dementia care: A vision to be refined. Can Alz Dis Rev 2003; April: 1418.Google Scholar
Macrae, H. Managing identity while living with Alzheimer’s disease. Qual Health Res 2010; 20: 293305.CrossRefGoogle ScholarPubMed
Harrison, C. Personhood, dementia and the integrity of a life. Can J Aging 1993; 12: 428–40.Google Scholar
Johnston, B, Narayanasamy, M. Exploring psychosocial interventions for people with dementia that enhance personhood and relate to legacy: An integrative review. BMC Geriatr 2016; 16: 77102.CrossRefGoogle ScholarPubMed
Kontos, PC. Embodied selfhood in Alzheimer’s disease: Rethinking person-centred care. Dement 2005; 4: 553–70.Google Scholar
Fazio, S, Mitchell, DB. Persistence of self in individuals with Alzheimer’s disease: Evidence from language and visual recognition. Dement 2009; 8: 3959.CrossRefGoogle Scholar
Brooker, D. What is person centred care in dementia? Rev Clin Gerontol 2004; 13: 215–22.Google Scholar
Rosvik, J, Kirkevold, M, Engedal, K, Brooker, D, Kirkevold, O. A model for using the VIPS framework for person-centred care for persons with dementia in nursing homes: A qualitative evaluative study. Int J Older People Nurs 2011; 6: 227–36.CrossRefGoogle Scholar
Kogan, AC, Wilber, K, Mosqueda, L. Person-centered care for older adults with chronic conditions and functional impairment: A systematic literature review. J Am Geriatr Soc 2016; 64: e1e7.CrossRefGoogle ScholarPubMed
Fazio, S, Pace, D, Flinner, J, Kallmyer, B. The fundamentals of person-centered care for individuals with dementia. Gerontologist 2018; 58; S10S19.CrossRefGoogle ScholarPubMed
Hagberg, B. The dementias in a psychodynamic perspective. In Miesen, B, Jones, G, eds. Care-Giving in Dementia: Research and Applications (Vol. 2). London/New York, Routledge. 1997; 14.Google Scholar
Brooker, D, Droës, RM, Evans, S. Framing outcomes of post-diagnostic psychosocial interventions in dementia: The adaptation-coping model and adjusting to change. WWOP 2017; 21: 1321.CrossRefGoogle Scholar
Bowlby, J. Attachment and Loss (Vol. 1). London, Hogarth Press, 1969.Google Scholar
Miesen, BML. Alzheimer’s disease, the phenomenon of parent fixation and Bowlby’s attachment theory. Int J Geriatr Psychiatry 1993; 8: 147–53.Google Scholar
Dröes, R.-M, van der Roest, HG, van Mierlo, L, Meiland, FJM. Memory problems in dementia: Adaptation and coping strategies and psychosocial treatments. Expert Rev Neurother 2011; 11: 1769–82.CrossRefGoogle ScholarPubMed
Hall, GR, Buckwalter, K C. Progressively lowered stress threshold: A conceptual model for care of adults with Alzheimer’s disease. Arch Psychiatr Nurs 1987; 1: 399406.Google Scholar
Souren, L, Franssen, E. Verbroken verbindingen: de ziekte van Alzheimer deel II. Praktische richtlijnen voor het omgaan met de Alzheimerpatiënt. Amsterdam/Lisse, Swets & Zeitlinger, 1993.Google Scholar
Reisberg, B, Ferris, SH, de Leon, MJ, Franssen, ESE, Kluger, A, Mir, P, … Cohen, J. Stage-specific behavioral, cognitive, and in vivo changes in community residing subjects with age-associated memory impairment and primary degenerative dementia of the Alzheimer type. Drug Dev Res 1988; 15: 101–14.CrossRefGoogle Scholar
Nolan, MR, 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. Sheffield, University of Sheffield, 2006.Google Scholar
Warren, JD, Hu, MTM, Galloway, M, Greenwood, RJ, Rossor, MN. Observations on the human rejection behaviour syndrome: Denny-Brown revisited. Mov Disord 2004; 19: 860–2.Google Scholar
Wampold, BE. How important are the common factors in psychotherapy? An update. World Psychiatry 2015; 14: 270–7.Google Scholar
Randall, WL. The anthropology of dementia: A narrative perspective. Int J Geriatr Psychiatry 2009; 24: 322–4.Google Scholar
Pollitt, PA. Dementia in old age: An anthropological perspective. Psychol Med 1996; 26: 1061–74.Google Scholar
Young, A. An anthropological perspective on medical knowledge. J Med Philos 1980; 5: 102–16.Google Scholar
Oxlund, B. The life course in a migrating world: Hybrid scripts of ageing and imaginaries of care. Adv in Life Course Res 2018; 38: 72–9.Google Scholar
Kehoua, G, Dubreuil, C-M, Ndamba-Bandzouzi, B, Guerchet, M, Mbelesso, P, Dartigues, J-F, Preux, P-M. People with dementia in sub-Saharan Africa. From support to abuse by caregivers: Results of EPIDEMCA-FU program in Congo. Dement Geriatr Cogn Disord Extra 2019; 9: 163–75.CrossRefGoogle ScholarPubMed
Mushi, D, Rongai, A, Paddick, SM, Dotchin, C, Mtuya, C, Walker, R. Social representation and practices related to dementia in Hai District of Tanzania. BMC Public Health 2014; 14: 260.CrossRefGoogle ScholarPubMed
Hashmi, M. Dementia: An anthropological perspective. Int J Geriatr Psy 2009; 24: 207–12.Google Scholar
Braun, KL, Browne, CV. Perceptions of dementia, caregiving, and help seeking among Asian and Pacific Islander Americans. Health Soc Work 1998; 23: 262–74.CrossRefGoogle ScholarPubMed
Henderson, JN, Henderson, LC. Cultural construction of disease: A supernormal construct of dementia in an American Indian tribe. J Cross-Cult Gerontol 2002; 17: 197212.Google Scholar
Henderson, JN, Traphagan, JW. Cultural factors in dementia: Perspectives from the anthropology of aging. Alzheimer Dis Assoc Disord 2005; 19: 272–4.CrossRefGoogle ScholarPubMed
Traphagan, JW. Interpreting senility: Cross-cultural perspectives. Care Manag J 2005; 6: 145–50.CrossRefGoogle ScholarPubMed
Calia, C, Johnson, H, Cristea, M. Cross-cultural representations of dementia: An exploratory study. J Glob Health 2019; 9: 011001.Google Scholar
Chiu, H, Tsoh, J. Commentary on ‘Dementia: An anthropological perspective’ by Mahnaz Hashmi. Int J Geriatr Psychiatry 2009; 24, 325–7.CrossRefGoogle ScholarPubMed
Shimizu, H. Beyond individualism and sociocentrism: An ontological analysis of the opposing elements in personal experiences of Japanese adolescents. Human Devel 2000; 43 :195–211.Google Scholar
Cohen, L. No Aging in India: Alzheimer’s, the Bad Family, and Other Modern Things. Berkeley, University of California Press, 1998.Google Scholar
Ikels, C. Constructing and deconstructing the self: Dementia in China. J Cross-Cult Gerontol 2002; 17: 233–51.CrossRefGoogle ScholarPubMed
World Health Organization. Global Action Plan on the Public Health Response to Dementia, 2017–25. https://apps.who.int/iris/bitstream/handle/10665/259615/9789241513487-eng.pdf.3. [Accessed 11 November 2020].Google Scholar
Pitt, B. Psychogeriatrics: An Introduction to the Psychiatry of Old Age (2nd edition). Edinburgh, Churchill Livingstone, 1982.Google Scholar
Andrews, ES. Institutionalising senile dementia in 19th‐century Britain. Sociol Health Illn 2017; 39: 244–57.CrossRefGoogle ScholarPubMed
Health Advisory Service. The Rising Tide: Developing Services for Mental Illness in Old Age. Sutton, Surrey: National Health Service, Health Advisory Service, 1982.Google Scholar
King’s Fund Centre. Living Well into Old Age: Applying Principles of Good Practice to Services for People with Dementia. Report Number 63. London, King’s Fund Publishing Office, 1984.Google Scholar
Poulshock, SM, Deimling, GT. Families caring for elders in residence: Issues in the measurement of burden. J Gerontol 1984; 39: 230–9.Google Scholar
Pratt, CC, Sclunall, VL, Wright, S, Cleland, M. Burden and coping strategies of caregivers to Alzheimer’s patients. Fam Relat 1985; 34: 2733.Google Scholar
Hirschfield, MJ. Families living and coping with the cognitively impaired. In Copp, LA, ed. Care of the Ageing: Recent Advances in Nursing. Edinburgh, Churchill Livingstone, 1981;159–67.Google Scholar
Hirschfield, MJ. Home care versus institutionalization: Family caregiving and senile brain disease. Int J Nurs Stud 1983; 20: 2332.Google Scholar
Sweeting, HN. Caring for a relative with dementia: Anticipatory grief and social death. Generations (Bulletin of the British Society of Gerontology) 1991; 16: 611.Google Scholar
Sweeting, HN, Gilhooly, MLM. Anticipatory grief: A review. Soc Sci Med 1990; 30: 1073–80.Google Scholar
Woods, RT. Alzheimer’s Disease: Coping with a Living Death. London, Souvenir Press, 1989.Google Scholar
Nolan, MR, Keady, J. Training together: A challenge for the future. J Dement Care 1996; 4: 1013.Google Scholar
Kitwood, T. Dementia Reconsidered: The Person Comes First. Bucks, Open University Press, 1997.Google Scholar
Davis, R. My Journey into Alzheimer’s Disease. Amersharn-on-the-Hill, Buckinghamshire, Scripture Press, 1989.Google Scholar
McGowin, DF. Living in the Labyrinth: A Personal Journey through the Maze of Alzheimer’s Disease. Cambridge, Mainsail Press, 1993.Google Scholar
Bartlett, R, O’Connor, D. From personhood to citizenship: Broadening the lens for dementia practice and research. J Aging Stud 2007, 21: 107–18.Google Scholar
Swarbrick, S, Khetani, B, Riley, C, Keady, J. Reflections on the ethics of co-research alongside people living with dementia. SAGE Research Methods Cases: Medicine and Health 2020. Available online at https://dx.doi.org/10.4135/9781529709209Google Scholar
Shannon, K, Bail, K., Neville, S. Dementia‐friendly community initiatives: An integrative review. J Clin Nurs 2019; 28: 2035–45.CrossRefGoogle ScholarPubMed
Kaplan, DB, Andersen, TC, Lehning, AJ, Perry, TE. Aging in place vs. relocation for older adults with neurocognitive disorder: Applications of Wiseman’s behavioral model. J Gerontol Soc Work 2015; 58: 521–38.Google Scholar
Clark, A, Campbell, S, Keady, J, Kuhlberg, A, Manji, K, Rummery, K, Ward, R. Neighbourhoods as relational places for people living with dementia. So Sci Med 2020. Available online at https://doi.org/10.1016/j.socscimed.2020.112927CrossRefGoogle Scholar
Wimo, A, Guerchet, M, Ali, G-C, Wu, Y-T, Prina, AM, Winblad, B, … Prince, M. The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement 2017; 13: 17.Google Scholar
Hampson, C, Morris, K. Dementia: Normal ageing, political cause or social construction. Gerontol Geriatr Med 2017; 1: 555568.Google Scholar
Broda, A, Bieber, A, Meyer, G, Hopper, L, Joyce, R, Irving, K, … ActifCare Consortium. Perspectives of policy and political decision makers on access to formal dementia care: Expert interviews in eight European countries. BMC Health Serv Res 2017; 17: 518.Google Scholar
Cloos, P. Is there a pathological way of ageing? Med Anthropol Theory 2017; 4: 60–9.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
×