Anticipatory Grief in Dementia: An Ethnographic Study of Loss and Connection
Tóm tắt
In this article, I address the experiences of family members of people with dementia, as they expressed the sensation of gradually losing the person with dementia. Based on ethnographic fieldwork in nursing homes in the Netherlands, and contributing to the anthropology of grief, I explore the co-existence of experiences of anticipatory grief and manifestations of care to maintain meaningful relations. I show how my interlocutors adapted to changing circumstances as the disease progressed, and in so doing found new ways to relate, as well as prepared for future losses and the expected end of life. I argue that anticipatory grief is temporal and relational, encompassing both present and future losses, and involving a continuous negotiation between the loss and the continuing relationship. I underscore the entanglement of loss and connection, showing how both exist parallel to, and may emerge from one another, and demonstrating how an anthropological approach to anticipatory grief can reveal the nuanced and equivocal character of experiences of illness and at the end of life.
Tài liệu tham khảo
Adams, Vincanne, Michelle Murphy, and Adele E. Clarke 2009 Anticipation: Technoscience, Life, Affect, Temporality. Subjectivity 28: 246–265
Ahmed, Sara 2004 The Cultural Politics of Emotion New York: Routledge
Blandin, Kesstan, and Renee Pepin 2015 Dementia Grief: A Theoretical Model of a Unique Grief Experience. Dementia. 16(1): 67–78
Boss, Pauline 1999 Ambiguous Loss: Learning to Live with Unresolved Grief Cambridge: Harvard University Press
Boss, Pauline 2011 Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief San Fransisco: Jossey-Bass. Kindle edition
Bowlby, John 1980 Attachment and Loss, Volume III: Loss Sadness and Depression New York: Basic Books
Bryant, Rebecca, and Daniel M. Knight 2019 The Anthropology of the Future Cambridge: Cambridge University Press
Buch, Elana D. 2013 Senses of Care: Embodying Inequality and Sustaining Personhood in the Home Care of Older Adults in Chicago. American Ethnologist 40(4): 637–650
Buch, Elana D. 2015 Anthropology of Aging and Care. Annual Review of Anthropology 44: 277–293
Buch, Elana D. 2018 Inequalities of Aging: Paradoxes of Independence in American Home Care New York: New York University Press
Carter, Gillian, Jenny T. van der Steen, Karen Galway, and Kevin Brazil 2015 General Practitioners’ Perceptions of the Barriers and Solutions to Good-Quality Palliative Care in Dementia. Dementia. https://doi.org/10.1177/1471301215581227
Danely, Jason 2014 Aging and Loss: Mourning and Maturity in Contemporary Japan New Brunswick: Rutgers University Press
Dewing, Jan 2002 From Ritual to Relationship: A Person-Centered Approach to Consent in Qualitative Research with Older People Who Have a Dementia. Dementia 1(2): 157–171
Dragojlovic, Ana, and Alex Broom 2018 Bodies and Suffering: Emotions and Relations of Care Oxon: Routledge
Driessen, Annelieke 2018 Pleasure and Dementia: On Becoming an Appreciating Subject. The Cambridge Journal of Anthropology 36(1): 23–39
Flaherty, Devin 2019 ’Takin’ It One Day at a Time’: (Not) Anticipating as Moral Project. The Cambridge Journal of Anthropology 37(1): 61–76
Freud, Sigmund 2005 [1917] On Murder, Mourning and Melancholia London: Penguin Books
Fulton, Robert 2003 Anticipatory Mourning: A Critique of the Concept. Mortality 8(4): 342–351
Fulton, Robert, and David J. Gottesman 1980 Anticipatory Grief: A Psychosocial Concept reconsidered. British Journal of Psychiatry 137: 45–54
Garcia, Angela 2010 The Pastoral Clinic Addiction and Dispossession Along the Rio Grande Berkeley: University of California Press
Gerrard, Nicci 2019 What Dementia Teaches Us About Love Penguin Books
Grøn, Lone, and Cheryl Mattingly 2018 In Search of the Good Old Life: Ontological Breakdown and Responsive Hope at the Margins of Life. Death Studies 42(5): 306–313
Grøn, Lone Forthcoming Yeah … Yeah. Imagistic Signatures and Responsive Care at a Danish Dementia Ward. In Imagistic Care. Growing Old in a Precarious World C. Mattingly, and L. Grøn, eds. Fordham University Press
Hemer, Susan R. 2017 Preparing for Death: Care, Anticipatory Grief and Social Death in Lihir, Papua New Guinea. Mortality. https://doi.org/10.1080/13576275.2017.1346596
Hertz, Robert 2004 [1907] A Contribution to the Study of the Collective Representation of Death. In Death, Mourning, and Burial: A Cross-Cultural Reader A.C.G.M. Robben, ed. Malden: Blackwell Publishing
Howarth, Glennys 2007 Death and Dying: A Sociological Introduction Cambridge: Polity Press
Huntington, Richard, and Peter Metcalf 1979 Celebrations of Death: The Anthropology of Mortuary Ritual Cambridge: Cambridge University Press
Jeong, Jong-min 2020 The Affective Creativity of a Couple in Dementia Care. Culture, Medicine, and Psychiatry 44: 360–381. https://doi.org/10.1007/s11013-019-09662-5
Kaufman, Sharon R. 2005 …And a Time to Die: How American Hospitals Shape the End of Life Chicago: University of Chicago Press
Kaufman, Sharon R. 2006 Dementia-Near-Death and “Life Itself.” In Thinking About Dementia: Culture, Loss, and the Anthropology of Senility A. Leibing, and L. Cohen, eds., New Brunswick: Rutgers University Press.
Kaufman, Sharon R. 2018 “Losing My Self”: A Poet’s Ironies and a Daughter’s Reflections on Dementia. Perspectives in Biology and Medicine 60(4): 549–568
Kennedy, James 2002 Een weloverwogen dood: euthanasie in Nederland Amsterdam: Bert Bakker
Kierans, Ciara, and Kirsten Bell 2017 Cultivating Ambivalence: Some Methodological Considerations for Anthropology. HAU: Journal of Ethnographic Theory 7(2). https://doi.org/10.14318/hau7.2.006
Kitwood, Tom 1993 Person and Process in Dementia. International Journal of Geriatric Psychiatry 8: 541–545
Kitwood, Tom 1997 Dementia Reconsidered: The Person Comes First Buckingham: Open University Press
Klass, Dennis, Phyllis R. Silverman, and Steven L. Nickman, eds. 1996 Continuing Bonds: New Understandings of Grief. New York: Routledge.
Kleinman, Arthur 1988 The Illness Narratives: Suffering, Healing, and the Human Condition New York: Basic Books
Králová, Jana 2015 What is Social Death? Contemporary Social Science 10(3): 235–248
Kübler-Ross, Elisabeth 2009 [1970] On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families London: Routledge.
Large, Samantha, and Richard Slinger 2015 Grief in Caregivers of Persons with Alzheimer’s Disease and Related Dementia: A Qualitative Synthesis. Dementia 14(2): 164–183
Leibing, Annette 2006 Divided Gazes: Alzheimer’s Disease, the Person Within, and Death in Life. In Thinking About Dementia: Culture, Loss, and the Anthropology of Senility A. Leibing, and L. Cohen, eds., New Brunswick: Rutgers University Press.
Leibing, Annette 2014 The Earlier the Better: Alzheimer’s Prevention, Early Detection, and the Quest for Pharmacological Interventions. Culture, Medicine, and Psychiatry 38: 217–236
Leibing, Annette, and Silke Schicktanz, eds. 2020 Preventing Dementia? Critical Perspectives on a New Paradigm of Preparing for Old Age. New York: Berghahn.
Lemos Dekker, Natashe 2021 Anticipating an Unwanted Future: Euthanasia and Dementia in the Netherlands. Journal of the Royal Anthropological Institute 27(4): 815–831. https://doi.org/10.1111/1467-9655.13429
Lindauer, Allison, and Theresa A. Harvath 2014 Pre-death Grief in the Context of Dementia Caregiving: A Concept Analysis. Journal of Advanced Nursing 70(10): 2196–2207
Lindemann, Erich 1944 Symptomatology and Management of Acute Grief. American Journal of Psychiatry 101(2): 141–148
Lindemann, Hilde 2014 Holding On and Letting Go: The Social Practice of Personal Identities Oxford: Oxford University Press
Mattingly, Cheryl 2014 Moral Laboratories: Family Peril and the Struggle for a Good Life Oakland: University of California Press
McDermott, Orii, Martin Orrell, and Hanne Mette Ridder 2014 The Importance of Music for People with Dementia: The Perspectives of People with Dementia, Family Carers, Staff and Music Therapists. Aging and Mental Health 18(6): 706–716
Mckillop, James, and Heather Wilkinson 2004 Make it Easy on Yourself: Advice to Researchers from Someone with Dementia on Being Interviewed. Dementia 3(2): 117–125
Moore, Kirsten J., Sophie Crawley Moore, Victoria Vickerstaff, Claudia Cooper, Michael King, and Elizabeth L. Sampson 2020 Is Preparation for End of Life Associated with Pre-death Grief in Caregivers of People with Dementia? International Psychogeriatrics 32(6): 753–763
Moreira, Tiago 2010 Now or Later? Individual Disease and Care Collectives in the Memory Clinic. In Care in Practice: On Tinkering in Clinics, Homes and Farms A. Mol, I. Moser, and J. Pols, eds. Bielefeld: Transcript
Moser, Ingunn 2011 Dementia and the Limits to Life: Anthropological Sensibilities, STS Interferences, and Possibilities for Action in Care. Science, Technology and Human Values 36(5): 704–722
Mulkay, Michael 1993 Social Death in Britain. In The Sociology of Death D. Clark, ed., Oxford, Cambridge: Blackwell Publishers.
Munn, Nancy D. 1992 The Cultural Anthropology of Time: A Critical Essay. Annual Review of Anthropology 21: 93–123
Olson, R.E. 2014 Indefinite Loss: The Experiences of Carers of a Spouse with Cancer. European Journal of Cancer Care 23: 553–561
Peacock, Shelley, Melanie Bayly, Kirstian Gibson, Lorraine Holtslander, Genevieve Thompson, and Megan O’Connell 2018 The Bereavement Experience of Spousal Caregivers to Persons with Dementia: Reclaiming Self. Dementia 17(1): 78–95
Pols, Jeannette, and Sarah Limburg 2016 A Matter of Taste? Quality of Life in Day-to-Day Living with ALS and a Feeding Tube. Culture, Medicine and Psychiatry 40: 361–382
Ponder, Rebecca J., and Elizabeth C. Pomeroy 1997 The Grief of Caregivers: How Pervasive Is It? Journal of Gerontological Social Work 27(1/2): 3–21
Radcliffe-Brown, A.R 2004 [1922] The Andaman Islanders. In Death, Mourning, and Burial: A Cross-cultural Reader. A.G.C.M. Robben, eds., pp. 151–155. Malden: Blackwell Publishing.
Rando, Therese A. 1983 An Investigation of Grief and Adaptation in Parents Whose Children Have Died from Cancer. Journal of Pediatric Psychology 8(1): 3–20
Robben, Antonius C.G.M., ed 2004 Death, Mourning, and Burial: A Cross-Cultural Reader Malden: Blackwell Publishing.
Rosaldo, Renato 2004 [1989] Grief and a Headhunter’s Rage. In Death, Mourning, and Burial: A Cross-cultural Reader. A.G.C.M. Robben, ed. Malden: Blackwell Publishing.
Rosaldo, Renato 2014 The Day of Shelly′s Death: The Poetry and Ethnography of Grief Durham: Duke University Press
Scheper-Hughes, Nancy 1993 Death Without Weeping: The Violence of Everyday Life in Brazil Berkely: University of California Press
Seaman, Aaron T. 2020 “Like He’s a Kid”: Relationality, Family Caregiving, and Alzheimer’s Disease. Medical Anthropology 39(1): 29–40
Shohet, Merav 2018 Two Deaths and a Funeral: Ritual Inscriptions’ Affordances for Mourning and Moral Personhood in Vietnam. American Ethnologist 45(1): 60–73
Silverman, Gila S., Aurélien Baroiller, and Susan R. Hemer 2020 Culture and Grief: Ethnographic Perspectives on Ritual, Relationships and Remembering. Death Studies. https://doi.org/10.1080/07481187.2020.1851885
Silverman, Phyllis R., and Steven L. Nickman 1996 Children's Construction of Their Dead Parents. In Continuing Bonds: New Understandings of Grief. D. Klass, P.R. Silverman, and S.L. Nickman, eds. New York: Routledge.
Stephan, Christopher, and Devin Flaherty 2019 Introduction. Experiencing Anticipation: Anthropological Perspectives. The Cambridge Journal of Anthropology 37(1): 1–16. https://doi.org/10.3167/cja.2019.370102
Stevenson, Lisa 2014 Life Beside Itself: Imagining Care in the Canadian Arctic Oakland: University of California Press
Sudnow, David 1967 Passing on: The Social Organization of Dying Englewood Cliffs: Prentice Hall
Swallow, Julia 2019 Constructing Classification Boundaries in the Memory Clinic: Negotiating Risk and Uncertainty in Constituting Mild Cognitive Impairment. Sociology of Health and Illness. https://doi.org/10.1111/1467-9566.13016
Sweeting, Helen N., and Mary L.M.. Gilhooly 1990 Anticipatory Grief: A Review. Social Science and Medicine 30(10): 1073–1080
Taylor, Janelle S. 2008 On Recognition, Caring, and Dementia. Medical Anthropology Quarterly 22(4): 313–335
Taylor, Janelle S. 2017 Engaging with Dementia: Moral Experiments in Art and Friendship. Cult Med Psychiatry 41: 284–303
The, Anne-Mei. 2009 Verlossers naast God: dokters en euthanasie in Nederland Amsterdam: Thoeris
van Gennep, Arnold 2004 [1909] The Rites of Passage. In Death, Mourning, and Burial: A Cross-Cultural Reader. A.C.G.M. Robben, ed. Malden: Blackwell Publishing
van Wijngaarden, Els, Carlo Leget, and Anne Goossensen 2015 Ready to Give Up on Life: The Lived Experience of Elderly People Who Feel Life is Completed and No Longer Worth Living. Social Science and Medicine 138: 257–264