The Phenomenology of Dementia
Time, Emotion, and Relationality in Life and Lifewriting
DOI:
https://doi.org/10.7146/ageculturehumanities.v7i.143102Abstract
This article will explore the subjective experience of time for people living with dementia, exploring the implications of the loss of the ability to expect, as well as to remember, and how this conditions lived experience. It will also look to intersubjective time as a condition of relationality and a structuring condition for reciprocal and empathic care. It uses an approach informed by neurobiology and phenomenology to analyze these forms of temporal experience, looking notably at features such as expectation and surprise, and their non-normative presentation in those living with dementia, following the methods of psychiatrist Eugene Minkowski, neurobiologist Francisco Varela, and philosopher Natalie Depraz. Finally, it will look to memoirs by those with dementia, as well those who live close to them, to add texture and emotional resonance to the scientific and philosophical accounts of time in dementia.
References
Ammaniti, Massimo and Pierfrancesco Ferrari. “Vitality effects in Daniel Stern’sThinking.” Infant Mental Health Journal, vol. 34, no. 5, 2013, pp. 367-75. https://doi.org/10.1002/imhj.21405.
Bayley, John. Iris; Iris and the Friends: An Omnibus Edition. Duckworth, 2002.
Blaiklock, Jack. “Husserl, Protention, and the Phenomenology of the Unexpected.” International Journal of Philosophical Studies, vol. 25, no. 4, 2017, pp. 467-83. https://doi.org/10.1080/09672559.2017.1342270.
Bortolotti, Lisa and Ema Sullivan-Bissett. “The Epistemic Innocence of Clinical Memory Distortion.” Mind & Language, 2018, vol. 33, pp. 263–279. https://doi.org/10.1111/mila.12175.
Bourdieu, Pierre. Outline of a Theory of Practice, translated by Richard Nice, Cambridge UP, 1977.
Bowlby, John. Attachment and loss. Vol. 1: Attachment. Basic Books, 1969.
Carman, Taylor. “The Body in Husserl and Merleau-Ponty.” Philosophical Topics, vol. 27, no. 2, 1999, pp. 205-226.
Clare, Linda, Julia Rowlands, Errollyn Bruce, Claire Surr and Murna Downs. “The Experience of Living with Dementia in Residential Care: An Interpretative Phenomenological Analysis.” The Gerontologist, vol. 48, no. 6, 2008, pp. 711-720. https://doi.org/10.1093/geront/48.6.711.
Couser, G. Thomas. Vulnerable Subjects: Ethics and Life Writing. Cornell UP, 2004.
Dalla Barba, Gianfranco and Valentina La Corte. “The hippocampus: a time machine that makes errors.” Trends in Cognitive Sciences, vol. 17, no. 3, 2013, pp. 102-4. https://doi.org/10.1016/j.tics.2013.01.005.
Davis, Robert L. My Journey into Alzheimer’s Disease. Tyndale House, 1989.
Davis, Boyd H. and Margaret McLagan. “Represented speech in dementia discourse.” Journal of Pragmatics, vol. 130, 2018, pp. 1-15. https://doi.org/10.1016/j.pragma.2018.03.023.
DeBaggio, Thomas. Losing My Mind: An Intimate Look at Life with Alzheimer’s. Free Press, 2002.
Depraz, Natalie. “The Rainbow of emotions: At the crossroads of neurobiology and phenomenology.” Continental Philosophy Review, vol. 41, no. 2, 2008, pp. 237-259. https://doi.org/10.1007/s11007-008-9080-y.
----. “Phenomenology of Surprise: Lévinas and Merleau-Ponty in the Light of Hans Jonas”, Advancing Phenomenology: Essays in Honor of Lester Embree, edited by Thomas Nanon and Philip Blosser, Springer, 2010, pp. 223-233.
----. “The Surprise of Non-Sense.” Enactive Cognition: At the Edge of Sense-Making, edited by Massimiliano Cappuccio and Tom Froese, Palgrave Macmillan, 2014, pp. 125-152.
De Witt, Lorna, Jenny Ploeg and Margaret Black. “Living alone with dementia: an interpretive phenomenological study with older women.” Journal of Advanced Nursing, vol. 66, no. 8, 2010, pp. 1698–1707. https://doi.org/10.1111/j.1365-2648.2010.05295.x.
Dworkin, Ronald. Life’s Dominion: An Argument about Abortion, Euthanasia and Individual Freedom. Alfred A. Knopf, 1993.
Eriksen, Siren, Ruth Louise Bartlett, Ellen Karine Grov, Tanja Louise Ibsen, Elisabeth Wiken Telenius and Anne Marie Mork Rokstad. “The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis.” Dementia and Geriatric Cognitive Disorders, vol. 49, 2020, pp. 435- 55. https://doi.org/10.1159/000511225.
Fuchs, Elinor. Making an Exit: A Mother/Daughter Drama of Alzheimer’s, Machine Tools and Laughter. Metropolitan, 2005.
----. “What the Theatre Taught me about Alzheimer’s.” The Journal of Law, Medicine & Ethics, vol. 46, 2018, pp. 749-55. https://doi.org/10.1177/1073110518804236.
Gerrard, Nikki. What Dementia Teaches Us About Love. Penguin, 2020.
Gibson, Janet. Dementia, Narrative and Performance: Staging Reality, Reimagining Identities, Palgrave Macmillan, 2020.
Heidegger, Martin. Being and Time, translated by John Macquarrie and Edward Robinson. SCM Press, 1962.
Hughes, Julian C., Stephen Louw and Stephen R. Sabat. “Seeing Whole.” Dementia: Mind, Meaning and the Person, edited by Julian C. Hughes, Stephen Louw and Stephen R. Sabat, Oxford University Press, 2006.
Husserl, Edmund. Experience and Judgement: Investigations in a Genealogy of Logic [1948], translated by James Spencer Churchill and Karl Ameriks, Northwestern University Press, 1973.
----. The Phenomenology of Internal Time Consciousness, translated by John B. Brough, Springer, 1991.
Jaspers, Karl. General Psychopathology, translated by John Hoenig and Marian W. Hamilton. Johns Hopkins UP, 1997.
Kontos, Pia. “Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease.” Ageing and Society, vol. 24, no. 6, 2004, pp. 829-849. https://doi.org/10.1017/S0144686X04002375
----. “Embodied selfhood in Alzheimer’s disease: Rethinking person-centred care.” Dementia vol. 4, no. 4, 2005, pp. 553-570. https://doi.org/10.1177/1471301205058311.
Kontos, Pia and Gary Naglie. “Bridging theory and practice: Imagination, the body, and person-centred dementia care.” Dementia, vol. 6, no. 4, 2007, pp. 549-569. https://doi.org/10.1177/1471301207084394.
Langan, Michael. “You Always Hurt the One You Love.” Buffalo News, December 27, 1998. http://www.buffalonews.com Accessed on 16/07/2023.
Lemma, Alexandra. “I Can’t Forget but I Don’t Remember What: The Phenomenology of Dementia.” Journal of Existential Analysis, vol. 4, 1993, pp. 84-90.
Levinas, Emmanuel. Autrement ou au delà de l’essence. M. Nijhoff, 1974.
MacIntyre, Alistair. After Virtue. University of Notre Dame Press, 1984.
Merleau-Ponty, Maurice. The Phenomenology of Perception, translated by Colin Smith, Routledge, 2002.
Minkowski, Eugene. Lived Time: Phenomenological and Psychopathological Studies, trans. Nancy Metzel, Northwestern University Press, 1970.
Moore, Bridie. “Improvisation and Vulnerability : Circuits of Care in Performance of Age and Ageing”, Contemporary Narratives of Ageing, Care and Illness, edited by Sarah Falcus and Katsura Sako, Routledge, 2022, pp. 31-46.
Nygård, Louise and Marianne Johansson. “The experience and management of temporality in five cases of dementia.” Scandinavian Journal of Occupational Therapy, vol. 8, no. 2, 2001, pp. 85–95. https://doi.org/10.1080/11038120120542.
Ricoeur, Paul. Freedom and Nature: The Voluntary and the Involuntary. Northwestern UP, 1966.
Roach, Pamela and Neil Drummond. “‘It’s nice to have something to do’: early onset dementia and maintaining purposeful activity.” Journal of Psychiatric and Mental Health Nursing, vol. 21, no. 10, 2014, pp. 889-95. https://doi.org/10.1111/jpm.12154.
Sacks, Oliver. The Man Who Mistook His Wife for a Hat, And Other Clinical Tales. Simon and Schuster, 1998.
Sandberg, Linn. “The old, the ugly and the queer: Thinking old age in relation to queer theory.” Graduate Journal of Social Science, vol. 5, no. 2, 2008, pp. 117-39.
Sandberg, Linn and Barbara Marshall, “Queering aging futures.” Societies, vol. 7, no. 5, 2017, p. 21. https://doi.org/10.3390/soc7030021
Schilling, Carol. “Looking after Iris: John Bayley’s Elegy for the Living.” Journal of Medical Humanities, vol. 38, 2017, pp. 13-23. https://doi.org/10.1007/s10912-016-9414-4.
Smith, David Woodruff. “Phenomenology.” The Stanford Encyclopedia of Philosophy, edited by Edward N. Zalta, Metaphysics Research Lab, 2013 http://plato.stanford.edu/archives/win2013/entries/phenomenology/ Accessed on 20/12/22.
Stern, Daniel N. The Interpersonal World of the Infant. Basic Books, 1985.
----. Forms of Vitality, Oxford UP, 2010.
Summa, Michela. “The disoriented self: Layers and dynamics of self-experience in dementia and schizophrenia.” Phenomenology and the Cognitive Sciences, vol. 13, 2014, pp. 477–96. https://doi.org/10.1007/s11097-013-9313-3.
Summa, Michela and Thomas Fuchs. “Self-experience in dementia.” Riv Internazionale Filos Psicol., vol. 6, 2015, pp. 387-405. https://doi.org/10.4453/rifp.2015.0038.
Taylor, Charles. Sources of the Self. Harvard UP, 1989.
Taylor, Janelle. “On Recognition, Caring and Dementia.” Medical Anthropology Quarterly, vol. 22, no. 4, 2008, pp. 313-335. https://doi.org/10.1111/j.1548-1387.2008.00036.x.
Varela, Francisco J. “The specious present: A neurophenomenology of time consciousness.” Naturalizing phenomenology: Issues in Contemporary Phenomenology and Cognitive Sciences, edited by Jean Petitot, Francisco J. Varela, Bernard Pachoud and Jean-Michel Roy, Stanford University Press, 1999, pp. 266-314.
Varela, Francisco J. and Natalie Depraz. “At the Source of Time: Valence and the constitutional dynamics of affect.” Journal of Consciousness Studies, vol. 12, nos. 8-10, 2005, pp. 61-81.
Waugh, Patricia. “The Naturalistic Turn, the Symptom, and the Neo-Phenomenological Novel.” Diseases and Disorders in Contemporary Fiction: The Syndrome Syndrome, edited by James Peacock and Tim Lustig. Routledge, 2013.
Zimmermann, Martina. The Poetics and Politics of Alzheimer’s Disease Lifewriting. Palgrave Macmillan, 2017.
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2024 Elizabeth Barry
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
From issue 6 (2022) onward, the journal uses the CC Attribution-NonCommercial-NoDerivatives 4.0 license. The authors retain their copyright. For articles published in previous issues (1,2,3,4 and 5) the authors retain their copyright to their articles. Readers can download, read, and link to the articles published in issues 1-5, but they cannot republish these articles. Authors can upload them in their institutional repositories.
