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The Dementia Experience: Sociological Observations on the Construction of Cognition in Care Homes

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Mental Health Uncertainty and Inevitability

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Abstract

Dementia is a pressing mental health problem with particular prevalence in care homes and other long-term care settings for older persons. Although biomedical knowledge about dementia is advancing rapidly, a cure remains beyond reach, and existing pharmacological treatment options are limited in efficacy and acceptability. Alternative, person-centred care strategies are therefore critically needed to support the quality of life of those living with dementia. Drawing on ethnographic case studies of care homes in the United Kingdom and United States, this chapter describes how the “institutional logics” underpinning care practices in different settings produced divergent “dementia experiences”, regardless of clinical diagnosis. Considering dementia as intersubjective and situated—not just pathological—highlights the potential for certain care strategies to ameliorate or even prevent the distress that is otherwise considered “symptomatic” of disease. The chapter concludes by discussing the significance of institutional logics theory for understanding mental health settings and services more broadly.

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Notes

  1. 1.

    In this chapter, the term “care home” will be used to denote residential long-term care facilities (with or without specialized dementia care units) that provide around-the-clock social care, such as washing, dressing, meals, and toilet care, along with qualified nursing care. In the United States, the terms “skilled nursing facility” and “nursing home” are commonly used instead, and various other terms are used internationally. “Resident” will be used here to describe individuals who live in care homes.

  2. 2.

    This research was supported by a doctoral studentship from the Collaboration for Leadership in Applied Health Research and Care of Nottinghamshire, Derbyshire, and Lincolnshire (funded by the National Institute for Health Research). The research was granted ethical approval by the School of Sociology and Social Policy at the University of Nottingham in accordance with the University of Nottingham’s Code of Research Conduct and Research Ethics. Through separate application processes, it was also approved by the research governance committee of Forest Lodge, the UK case study, and the Social and Behavioural Sciences Institutional Review Board at the State University of New York at Buffalo. Pseudonyms have been used to protect anonymity.

  3. 3.

    Bed numbers and certain other identifying details have been approximated or amended for the purposes of anonymity.

  4. 4.

    Quotation marks in field note excerpts indicate the verbatim wording of research participants; otherwise, the conversations described in field notes have been paraphrased.

  5. 5.

    “Alert and oriented times three” means that a person can correctly answer questions about their name, their present location, and the date.

References

  • Agar, M. (1996). The professional stranger: An informal introduction to ethnography. New York: Academic.

    Google Scholar 

  • Alzheimer’s Society. (2007). Dementia UK: The full report. London: Alzheimer’s Society.

    Google Scholar 

  • Alzheimer’s Disease International (ADI). (2015). World Alzheimer report 2015. The global impact of dementia: An analysis of prevalence, incidence, cost and trends. London: ADI.

    Google Scholar 

  • American Psychiatric Association (APA). (2013). Diagnostic and statistical manual of mental disorders. Arlington: American Psychiatric Publishing.

    Book  Google Scholar 

  • Ballenger, J. F. (2000). Beyond the characteristic plaques and tangles: Mid-twentieth-century US psychiatry and the fight against senility. In P. J. Whitehouse, K. Maurer, & L. F. Ballengers (Eds.), Concepts of Alzheimer disease: Biological, clinical, and cultural perspectives (pp. 83–103). Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Banerjee, S. (2009). The use of antipsychotic medication for people with dementia: Time for action. London: Department of Health.

    Google Scholar 

  • Bartlett, R., & O’Connor, D. (2010). Broadening the dementia debate: Towards social citizenship. Bristol: Policy Press.

    Google Scholar 

  • Berchtold, N. C., & Cotman, C. W. (1998). Evolution in the conceptualization of dementia and Alzheimer’s disease: Greco-Roman period to the 1960s. Neurobiology of Aging, 19(3), 173–189.

    Article  PubMed  Google Scholar 

  • Bjerregaard, T. (2011). Institutional change at the frontlines: A comparative ethnography of divergent responses to institutional demands. Qualitative Research in Organizations and Management: An International Journal, 6(1), 26–45.

    Article  Google Scholar 

  • Boenink, M., Cuijpers, Y., van der Laan, A. L., van Lente, H., & Moors, E. (2011). Assessing the sociocultural impacts of emerging molecular technologies for the early diagnosis of Alzheimer’s disease. International Journal of Alzheimer’s. 1–9.

    Google Scholar 

  • Bone, C., Cheung, G., & Wade, B. (2010). Evaluating person centred care and dementia care mapping in a psychogeriatric hospital in New Zealand: A pilot study. New Zealand Journal of Occupational Therapy, 57(1), 35.

    Google Scholar 

  • Bourdieu, P. (1990). The logic of practice. Cambridge, MA: Polity Press.

    Google Scholar 

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.

    Article  Google Scholar 

  • Bryden, C. (2005). Dancing with dementia: My story of living positively with dementia. London/Philadelphia: Jessica Kingsley Publishers.

    Google Scholar 

  • Burns, D., Hyde, P., & Killett, A. (2013). Wicked problems or wicked people? Reconceptualising institutional abuse. Sociology of Health & Illness, 35(4), 514–528.

    Article  Google Scholar 

  • Casey, D. A., Antimisiaris, D., & O’Brien, J. (2010). Drugs for Alzheimer’s disease: Are they effective? Pharmacy and Therapeutics, 35(4), 208.

    PubMed  PubMed Central  Google Scholar 

  • Centers for Disease Control and Prevention (CDC). (2015). Nursing home care. [online]. Available at: http://www.cdc.gov/nchs/fastats/nursing-home-care.htm. Accessed 29 Feb 2016.

  • Cerejeira, J., Lagarto, L., & Mukaetova-Ladinska, E. (2012). Behavioral and psychological symptoms of dementia. Frontiers in Neurology, 3, 73.

    Article  PubMed  PubMed Central  Google Scholar 

  • Chenoweth, L., King, M. T., Jeon, Y. H., Brodaty, H., Stein-Parbury, J., Norman, R., Haas, M., & Luscombe, G. (2009). Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: A cluster-randomised trial. Lancet Neurology, 8(4), 317–325.

    Article  PubMed  Google Scholar 

  • Dubois, B., Feldman, H. H., Jacova, C., Hampel, H., Molinuevo, J. L., Blennow, K., DeKosky, S. T., Gauthier, S., Selkoe, D., & Bateman, R. (2014). Advancing research diagnostic criteria for Alzheimer’s disease: The IWG-2 criteria. The Lancet Neurology, 13(6), 614–629.

    Article  PubMed  Google Scholar 

  • Eden Alternative. (2014). The Eden Alternative overview brochure. [online]. Available at: http://edenalt.org/wordpress/wp-content/uploads/2014/02/Eden_Overview_092613LR.pdf. Accessed 29 Feb 2016.

  • Edvardsson, D., & Innes, A. (2010). Measuring person-centered care: A critical comparative review of published tools. The Gerontologist, 50(6), 834–846.

    Article  PubMed  Google Scholar 

  • Feldman, M. S., & Orlikowski, W. J. (2011). Theorizing practice and practicing theory. Organization Science, 22, 1240–1253.

    Article  Google Scholar 

  • Flyvbjerg, B. (2006). Five misunderstandings about case-study research. Qualitative Inquiry, 12(2), 219–245.

    Article  Google Scholar 

  • Foley, D. E. (2002). Critical ethnography: The reflexive turn. Qualitative Studies in Education, 15(5), 469–490.

    Article  Google Scholar 

  • Folstein, M., Folstein, S., & McHugh, P. (1975). Mini-mental state: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198.

    Article  PubMed  Google Scholar 

  • Foner, N. (1994). Nursing home aides: Saints or monsters? The Gerontologist, 34(2), 245.

    Article  PubMed  Google Scholar 

  • Francis, R. (2013). Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. London: The Stationery Office.

    Google Scholar 

  • Freer, J., & Badrakalimuthu, V. R. (2011). Dementia in care homes. In T. Dening & A. Milne (Eds.), Mental health and care homes (p. 161). Oxford: Oxford University Press.

    Chapter  Google Scholar 

  • Friedland, R., & Alford, R. R. (1991). Bringing society back in: Symbols, practices and institutional contradictions. In W. W. Powell & P. J. Dimaggio (Eds.), The new institutionalism in organizational analysis. Chicago: University of Chicago Press.

    Google Scholar 

  • Glasgow, R. E., & Emmons, K. M. (2007). How can we increase translation of research into practice? Types of evidence needed. Annual Review of Public Health, 28, 413–433.

    Article  PubMed  Google Scholar 

  • Goffman, E. (1961). Asylums: Essays on the social situations of mental patients and other inmates. London: Penguin.

    Google Scholar 

  • Gubrium, J. F. (1986). Oldtimers and Alzheimer’s. Greenwich: JAI Press.

    Google Scholar 

  • Health Foundation. (2014). Person-centred care made simple. [online]. Available at: http://www.health.org.uk/sites/default/files/PersonCentredCareMadeSimple.pdf. Accessed 29 Feb 2016.

  • Holstein, M. (2000). Aging, culture and the framing of Alzheimer disease. In P. J. Whitehouse, K. Maurer, & L. F. Ballengers (Eds.), Concepts of Alzheimer disease: Biological, clinical, and cultural perspectives (p. 158). Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Hyde, P., Burns, D., Hassard, J., & Killett, A. (2014). Colonizing the aged body and the organization of later life. Organization Studies, 35(11), 1699–1717.

    Article  Google Scholar 

  • Innes, A. (2002). The social and political context of formal dementia care provision. Ageing and Society, 22(4), 483–499.

    Article  Google Scholar 

  • Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press.

    Google Scholar 

  • Koren, M. J. (2010). Person-centered care for nursing home residents: The culture-change movement. Health Affairs, 29(2), 312–317.

    Article  PubMed  Google Scholar 

  • Kovach, C. R., Noonan, P. E., Schlidt, A. M., & Wells, T. (2005). A model of consequences of need-driven, dementia-compromised behavior. Journal of Nursing Scholarship, 37(2), 134–140.

    Article  PubMed  Google Scholar 

  • Kumar, A., & Singh, A. (2015). A review on Alzheimer’s disease pathophysiology and its management: An update. Pharmacological Reports, 67(2), 195–203.

    Article  PubMed  Google Scholar 

  • Leibing, A. (2006). Divided gazes: Alzheimer’s disease, the person within, and death in life. In A. Leibing & L. Cohen (Eds.), Thinking about dementia – culture, loss, and the anthropology of senility. New York: Rutgers University Press.

    Google Scholar 

  • Livingston, G., Kelly, L., Lewis-Holmes, E., Baio, G., Morris, S., Patel, N., Omar, R. Z., Katona, C., & Cooper, C. (2014). A systematic review of the clinical effectiveness and cost-effectiveness of sensory, psychological and behavioural interventions for managing agitation in older adults with dementia. Health Technology Assessment, 18(39), 1–226.

    Article  Google Scholar 

  • Luppa, M., Luck, T., Weyerer, S., König, H.-H., Brähler, E., & Riedel-Heller, S. G. (2010). Prediction of institutionalization in the elderly. A systematic review. Age and Ageing, 39(1), 31–38.

    Article  PubMed  Google Scholar 

  • Maurer, K., Volk, S., & Gerbaldo, H. (1997). Auguste D and Alzheimer’s disease. The Lancet, 349(9064), 1546–1549.

    Article  Google Scholar 

  • McKeown, J., Clarke, A., Ingleton, C., Ryan, T., & Repper, J. (2010). The use of life story work with people with dementia to enhance person-centred care. International Journal of Older People Nursing, 5(2), 148–158.

    Article  PubMed  Google Scholar 

  • Miller, S. C., Lepore, M., Lima, J. C., Shield, R., & Tyler, D. A. (2014). Does the introduction of nursing home culture change practices improve quality? Journal of the American Geriatrics Society, 62(9), 1675–1682.

    Article  PubMed  PubMed Central  Google Scholar 

  • Milne, A., & Dening, T. (2011). Introduction. In T. Dening & A. Milne (Eds.), Mental health and care homes. Oxford: Oxford University Press.

    Google Scholar 

  • Murphy, E., & Dingwall, R. (2007). Informed consent, anticipatory regulation and ethnographic practice. Social Science & Medicine, 65(11), 2223–2234.

    Article  Google Scholar 

  • NICE. (2006). Dementia: Supporting people with dementia and their carers in health and social care (NICE clinical guideline, Vol. 42). London: NICE/SCIE.

    Google Scholar 

  • Nicolini, D. (2011). Practice as the site of knowing: Insights from the field of telemedicine. Organization Science, 22(3), 602–620.

    Article  Google Scholar 

  • Nutley, S., Walter, I., & Davies, H. T. O. (2003). From knowing to doing: A framework for understanding the evidence-into-practice agenda. Evaluation, 9(2), 125–148.

    Article  Google Scholar 

  • Office for National Statistics (ONS). (2014). Changes in the older resident care home population between 2001 and 2011. London: ONS.

    Google Scholar 

  • Osborne, H., Simpson, J., & Stokes, G. (2010). The relationship between pre-morbid personality and challenging behaviour in people with dementia: A systematic review. Aging & Mental Health, 14(5), 503–515.

    Article  Google Scholar 

  • Panorama. (2011). Undercover care: The abuse exposed. BBC One.

    Google Scholar 

  • Post, S. (2000). The concept of Alzheimer’s disease in a hypercognitive society. In P. J. Whitehouse, K. Maurer, & J. F. Ballenger (Eds.), Concepts of Alzheimer disease: Biological, clinical, and cultural perspectives. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Prince, M., Prina, M., Guerchet, M., & Alzheimer’s Disease International (ADI). (2013). World Alzheimer report 2013: An analysis of long-term care for dementia. London: ADI.

    Google Scholar 

  • Sabat, S. R. (2001). The experience of Alzheimer’s disease: Life through a tangled veil. Hoboken: Wiley-Blackwell.

    Google Scholar 

  • Savage, J. (2000). Participative observation: Standing in the shoes of others? Qualitative Health Research, 10(3), 324.

    Article  PubMed  Google Scholar 

  • Scales, K. (2014). Doing what makes sense: Locating knowledge about person-centred care in the everyday logics of long-term care. Ph.D., University of Nottingham.

    Google Scholar 

  • Schatzki, T. R. (2005). Peripheral vision: The sites of organizations. Organization Studies, 26(3), 465–484.

    Article  Google Scholar 

  • Shier, V., Khodyakov, D., Cohen, L. W., Zimmerman, S., & Saliba, D. (2014). What does the evidence really say about culture change in nursing homes? The Gerontologist, 54(Suppl 1), S6–S16.

    Article  PubMed  Google Scholar 

  • Sink, K. M., Holden, K. F., & Yaffe, K. (2005). Pharmacological treatment of neuropsychiatric symptoms of dementia: A review of the evidence. JAMA, 293(5), 596.

    Article  PubMed  Google Scholar 

  • Spector, A., Orrell, M., Davies, S., & Woods, B. (2000). Reality orientation for dementia. The Cochrane Library.

    Google Scholar 

  • Stokes, G. (2008). And still the music played on: Stories of people with dementia. London: Hawker Publications.

    Google Scholar 

  • The American Geriatrics Society Expert Panel on Person-Centered Care. (2016). Person-centered care: A definition and essential elements. Journal of the American Geriatrics Society, 64(1), 15–18.

    Article  Google Scholar 

  • Thornton, P. (2015). Culture and institutional logics. In J. D. Wright (Ed.), International encyclopedia of the social and behavioral sciences. Amsterdam: Elsevier.

    Google Scholar 

  • Thornton, P. H., & Ocasio, W. (2008). Institutional logics. In R. Greenwood, C. Oliver, R. Suddaby, & K. Sahlin-Andersson (Eds.), The Sage handbook of organizational institutionalism. Ventura: Sage.

    Google Scholar 

  • Tolson, D., Smith, M., & Knight, P. (1999). An investigation of the components of best nursing practice in the care of acutely ill hospitalized older patients with coincidental dementia: A multi‐method design. Journal of Advanced Nursing, 30(5), 1127–1136.

    Article  PubMed  Google Scholar 

  • van Maanen, J. (2006). Ethnography then and now. Qualitative Research in Organizations and Management: An International Journal, 1(1), 13–21.

    Article  Google Scholar 

  • Whitehouse, P. J., & Maurer, K. (2000). Concepts of Alzheimer disease: Biological, clinical, and cultural perspectives. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Williams, G., & Busby, H. (2000). The politics of “disabled” bodies. In S. J. Williams, J. Gabe, & M. Calnan (Eds.), Health, medicine, and society: Key theories, future agendas. London/New York: Routledge.

    Chapter  Google Scholar 

  • Wolcott, H. F. (1999). Ethnography: A way of seeing. Lanham: AltaMira Press.

    Google Scholar 

  • Woods, R. T. (1989). Alzheimer’s disease: Coping with a living death. London: Souvenir Press.

    Google Scholar 

  • World Health Organization (WHO). (2008). Scaling up care for mental, neurological, and substance use disorders (Mental Health Gap Action Programme (mhGAP) report). Geneva: WHO.

    Google Scholar 

  • Yin, R. K. (2009). Case study research: Design and methods. London: Sage.

    Google Scholar 

  • Zussman, R. (2004). People in places. Qualitative Sociology, 27(4), 351–363.

    Article  Google Scholar 

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Authors and Affiliations

  1. Center for the Study of Aging and Human Development and School of Nursing, Duke University, Durham, NC, USA

    Kezia Scales

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  1. Kezia Scales
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Correspondence to Kezia Scales .

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Editors and Affiliations

  1. School of Sociology and Social Policy, University of Nottingham, Nottingham, United Kingdom

    Hugh Middleton

  2. School of Sociology and Social Policy, University of Nottingham, Nottingham, United Kingdom

    Melanie Jordan

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Scales, K. (2017). The Dementia Experience: Sociological Observations on the Construction of Cognition in Care Homes. In: Middleton, H., Jordan, M. (eds) Mental Health Uncertainty and Inevitability. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-43970-9_4

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