Ethical Issues in Dementia Care
This chapter addresses some of the key ethical dilemmas posed during the course of dementia, from diagnosis through to end-of-life care. These dilemmas present a variety of different but related issues concerning autonomy and agency, care, consideration and dignity. While many of these are shared by other conditions associated with neuro-cognitive impairments, what is difficult is the temporal instability of those impairments and especially their progressive nature that changes the conditions upon which clinical and personal decisions are to be made, from those confronting the person faced with an early diagnosis to those with responsibility for caring at the limits of life. We have tried to cover most of these dilemmas – of choice, dignity and responsibility throughout the course of dementia – in a way that we hope will be helpful to clinicians, researchers and those more personally interested in the condition, recognising that during this process considerations of agency and autonomy are inevitably overshadowed by care and the concerns of others.
KeywordsNursing Home Moral Agency Advanced Directive Formal Care Decisional Autonomy
- Afram, B., Stephan, A., Verbeek, H., Bleijlevens, M.H., Suhonen, R., Sutcliffe, C., Raamat, M., Cabrera, E., Soto, M.E., Hallberg, I.R. & the RightTimePlaceCare Consortium. (2014). Reasons for institutionalization of people with dementia: informal caregiver reports from 8 European countries. Journal of the American Medical Directors Association, 15(2), 108–116.CrossRefGoogle Scholar
- Alzheimer Europe/EU (2014). Dementia in Europe Yearbook 2014: National care pathways for people with dementia living at home. Alzheimer Europe, Luxembourg.(accessed via: http://www.alzheimer-europe.org/Publications/Dementia-in-Europe-Yearbooks).
- American Psychiatric Association (APA) (2014) Diagnostic and statistical manual. Washington, DC: APA.Google Scholar
- Anquinet, L., Rietjens, J.A., Vandervoort, A., van der Steen, J.T., Vander Stichele, R., Deliens, L., Van den Block, L. (2013). Continuous deep sedation until death in nursing home residents with dementia: a case series. Journal of the American Geriatrics Society, 61(10), 1768–1776.CrossRefGoogle Scholar
- Coupé, P., Fonov, V.S., Bernard, C., Zandifar, A., Eskildsen, S.F., Helmer, C., Manjón, J.V., Amieva, H., Dartigues, J.F., Allard, M., Catheline, G., Collins, D.L. and The Alzheimer’s Disease Neuroimaging Initiative (2015). Detection of Alzheimer’s disease signature in MR images seven years before conversion to dementia: toward an early individual prognosis. Human Brain Mapping, 36(12), 4758–4770.CrossRefGoogle Scholar
- Dresser, R. (2002). Precommitment: A misguided for securing death with dignity. Texas Law Review, 81, 1823-.Google Scholar
- Dworkin, R. (1993). Life’s dominion. An argument about abortion, euthanasia, and individual freedom. New York: Alfred A Knopf.Google Scholar
- Gastmans, C. (2013). Dignity-enhancing care for persons with dementia and its application to advance euthanasia directives. In Y. Denier, C. Gastmans, A. Vandevelde (Eds.), Justice, luck & responsibility in health care: philosophical background and ethical implications for end-of-life care (pp. 145–165). Dordrecht: Springer.CrossRefGoogle Scholar
- Hendriks, S.A., Smalbrugge, M., Galindo-Garre, F., Hertogh, C.M., van der Steen, J.T. (2015). From admission to death: Prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia. Journal of the American Medical Directors Association, 16(6), 475–481.CrossRefGoogle Scholar
- Kirtley, A., and Williamson, T. (2016). What is truth? An inquiry about truth and lying in dementia care. London. Mental Health Foundation.Google Scholar
- Latham, S.R. (2010). Living wills and Alzheimer’s Disease. Quinnipiac Probate Law Journal, 23(4), 425–431.Google Scholar
- McKhann, G.M., Knopman, D.S., Chertkow, H., Hyman, B.T., Jack, C.R., Kawas, C.H. Klunk, W.E., et alii. (2011). The diagnosis of dementia due to Alzheimer’s disease: recommendations from the national institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s & Dementia, 7(3), 263–269.CrossRefGoogle Scholar
- MetLife Foundation (2006). Alzheimer’s survey: What America thinks. New York: MetLife Foundation.Google Scholar
- Nuffield Council on Bioethics. (2009). Dementia: ethical issues. London: Nuffield Council on Bioethics.Google Scholar
- OECD (2015). Addressing dementia: the OECD response, OECD Health Policy Studies, OECD Publishing, Paris. (accessed via: http://dx.doi.org/10.1787/9789264231726-en).
- Ray, S., Britschgi, M., Herbert, C., Takeda-Uchimura, Y., Boxer, A., Blennow, K., Friedman, L.F., Galasko, D.R, Jutel, M., Karydas, A., Kaye, J.A, Leszek, J., Miller, B.L, Minthon, L., Quinn, J.F., Rabinovici, J.D., Robinson, W.H., Sabbagh, M.N, So, YT., Sparks, D.L., Tabaton, M., Tinklenberg, J., Yesavage, J. A., Tibshirani, R., Wyss-Coray, T. (2007). Classification and prediction of clinical Alzheimer’s diagnosis based on plasma signaling proteins. Nature Medicine, 13(11), 1359–1362.CrossRefGoogle Scholar
- Ricoeur, P. (1992). Oneself as Another (trans. Kathleen Blamey). Chicago, IL: The University of Chicago Press.Google Scholar
- Schneider, L.S., Mangialasche, F., Andreasen, N., Feldman, H., Giacobini, E., Jones, R., Mantuia, V., Mecocci, P., Pani, L., Winblad, B., Kivipelto, M. (2014). Clinical trials and late-stage drug development for Alzheimer’s disease: an appraisal from 1984 to 2014. Journal of Internal Medicine, 275(3), 251–283.CrossRefGoogle Scholar
- Schwarzkopf, L., Menn, P., Leidl, R., Graessel, E., Holle, R. (2013). Are community-living and institutionalized dementia patients cared for differently? Evidence on service utilization and costs of care from German insurance claims data. BMC Health Services Research, 13(1), 2.CrossRefGoogle Scholar
- Small, G.W., Rabins, P.V., Barry, P.P., Buckholtz, N.S., DeKosky, S.T., Ferris, S.H., Finkel, S.I., Gwyther, L.P., Kachachurian, Z.S., Liebowitz, B.D., McRae, T., Morris, J.C., Oakley, F., Schneider, L.S., Streim, J.E., Sunderland, J., Teri, L.A., Tune, L.E. (1997). Diagnosis and treatment of Alzheimer disease and related disorders: consensus statement of the American Association for Geriatric Psychiatry, the Alzheimer’s Association, and the American Geriatrics Society. JAMA, 278(16), 1363–1371.CrossRefGoogle Scholar
- Teno, J. M., Branco, K. J., Mor, V., Phillips, C. D., Hawes, C., Morris, J., Fries, B. E. (1997). Changes in advance care planning in nursing homes before and after the Patient Self-Determination Act: Report of a 10-state survey. Journal of the American Geriatrics Society, 45(8), 939–944.CrossRefGoogle Scholar
- van der Maaden, T., van der Steen, J.T., de Vet, H.C., Hertogh, C.M., & Koopmans, R.T. (2015). Prospective observations of discomfort, pain, and dyspnea in nursing home residents with dementia and pneumonia. Journal of the American Medical Directors Association (online - via: http://www.sciencedirect.com/science/article/pii/S1525861015005496).
- von Kutzleben, M., Schmid, W., Halek, M., Holle, B., & Bartholomeyczik, S. (2012). Community-dwelling persons with dementia: what do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging & Mental Health, 16(3), 378–390.CrossRefGoogle Scholar
- Williams, V., Boyle, G., Jepson, M., Swift, P., Williamson, T., Heslop, P. (2012). Making best interests decisions: people and processes. London: Mental Health Foundation.Google Scholar
- World Health Organization (2012). Dementia: a public health priority, Geneva, Switzerland. (accessed via: http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf ).