Skip to main content

Advertisement

SpringerLink
Log in

Eternal sunshine of the spotless mind? An anthropological-ethical framework for understanding and dealing with sexuality in dementia care

  • Scientific Contribution
  • Published:
Medicine, Health Care and Philosophy Aims and scope Submit manuscript

Abstract

Contemporary bioethics pays considerable attention to the ethical aspects of dementia care. However, ethical issues of sexuality especially as experienced by institutionalized persons with dementia are often overlooked. The relevant existing ethics literature generally applies an implicit philosophical anthropology that favors the principle of respect for autonomy and the concomitant notion of informed consent. In this article we will illustrate how this way of handling the issue fails in its duty to people with dementia. Our thesis is that a more inclusive philosophical anthropology is needed that also heeds the fate of this growing population. Drawing on the tradition of phenomenology, we will chalk out an anthropological framework that rests on four fundamental characteristics of human existence: the decentered self, human embodiment, being-in-the-world and being-with-others. Our aim in this article is thus to tentatively put forward a broader perspective for looking at aged sexuality in institutionalized people with dementia. Hopefully the developed framework will mark the beginning of a new and refreshed ethical reflection on the topic at hand.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  1. Dementia is an umbrella term describing a wide range of symptoms associated with a decline in mental ability. There are many different types of dementia, each with their own specific disease trajectory, signs, and symptoms. The most common form of dementia is Alzheimer’s Disease (AD). Within this article, however, we choose not to distinguish dementia into its different types and stages unless otherwise mentioned. This however does not mean—in any way—that we wish to deny the variety of dementia types, stages and experiences.

References

  • Archibald, C. 1998. Sexuality, dementia and residential care: Managers report and response. Health and Social Care in the Community 6(2): 95–101.

    Article  Google Scholar 

  • Archibald, C. 2003. Sexuality and dementia: The role dementia plays when sexual expression becomes a component of residential care work. Alzheimer’s Care Quarterly 4(2): 137–148.

    Google Scholar 

  • Aristotle. 1967. Prior analytics, ed. H. Tredennick. London: Heinemann.

  • Ashworth, A., and P. Ashworth. 2003. The lifeworld as phenomenon and as research heuristic, exemplified by a study of the lifeworld in a person suffering from Alzheimer’s Disease. Journal of Phenomenological Psychology 34(2): 179–205.

    Article  Google Scholar 

  • Bauer, M., D. Fetherstonhaugh, L. Tarzia, R. Nay, D. Wellman, and E. Beattie. 2012. ‘I always look under the bed for a man’. Needs and barriers to the expression of sexuality in residential aged care: The views of residents with and without dementia. Psychology and Sexuality. doi:10.1080/19419899.12.713869.

    Google Scholar 

  • Beauchamp, T.L., and J.F. Childress. 2009. Principles of biomedical ethics. New York: Oxford University Press.

    Google Scholar 

  • Berger, J.T. 2000. Sexuality and intimacy in the nursing home: A romantic couple of mixed cognitive capacities. Journal of Clinical Ethics 11(4): 309–313.

    Google Scholar 

  • Carpentier, M.Y., and J.D. Fortenberry. 2010. Romantic and sexual relationships, body image, and fertility in adolescent and young adult testicular cancer survivors: A review of the literature. Journal of Adolescent Health 47(2): 115–125.

    Article  Google Scholar 

  • Casta-Kaufteil, A. 2004. The old and the restless: Mediating rights to intimacy for nursing home residents with cognitive impairment. Journal of Medicine and Law 69: 69–86.

    Google Scholar 

  • Cleary, V., and J. Hegarty. 2011. Understanding sexuality in women with gyneacological cancer. European Journal of Oncology Nursing 15(1): 38–45.

    Article  Google Scholar 

  • Davis, D.H.J. 2004. Dementia: Sociological and philosophical constructions. Social Science and Medicine 58(2): 369–378.

    Article  Google Scholar 

  • Dekkers, W.J.M. 2001. Autonomy and dependence: Chronic physical illness and decision-making capacity. Medicine, Health Care and Philosophy 4(2): 185–192.

    Article  Google Scholar 

  • Dekkers, W.J.M. 2004. Autonomy and the lived body in cases of severe dementia. In Ethical foundations of palliative care for alzheimer disease, ed. R.D. Purtilo, and H.A.M.J. ten Have, 115–130. Maryland: John Hopkins University Press.

    Google Scholar 

  • Dekkers, W. 2013. Do we need an anthropology of the aging person and what should it look like? In Ethics, health policy and (anti-) aging: Mixed blessings, ed. M. Schermer, and W. Pinxten, 41–58. Dordrecht: Springer.

    Chapter  Google Scholar 

  • den Hartogh, G. 2013. The authority of advance directives. In Justice, luck and responsibility in health care, ed. Y. Denier, C. Gastmans, and A. Vandevelde, 167–188. Dordrecht: Springer.

    Chapter  Google Scholar 

  • Diprose, R. 2002. Corporeal generosity. On giving with Nietzsche, Merleau-Ponty and Levinas. New York, NY: State University of New York Press.

    Google Scholar 

  • Fontana, A., and R.W. Smith. 1989. Alzheimer’s disease victims: The “unbecoming” of self and the normalization of competence. Sociological Perspectives 32(1): 35–46.

    Article  Google Scholar 

  • Gott, M. 2005. Sexuality, sexual health and ageing. Berkshire: Open University Press.

    Google Scholar 

  • Groenhout, R.E. 2004. Connected lives. Human nature and an ethics of care. New York, NY: Rowman & Littlefield.

    Google Scholar 

  • Hajjar, Ramzi R., and Hosam K. Kamel. 2003. Sex and the nursing home. Clinics in Geriatric Medicine 19(3): 575–586.

    Article  Google Scholar 

  • Heidegger, M. 2001. Sein und Zeit. Tübingen: Max Niemeyer Verlag.

    Google Scholar 

  • Hodson, D.S., and P. Skeen. 1994. Sexuality and aging: The hammerlock of myths. Journal of Applied Gerontology 13(3): 219–235.

    Article  Google Scholar 

  • Holm, S. 2013. The implicit anthropology of bioethics and the problem of the aging person. In Ethics, health policy and (anti-) aging: Mixed blessings, ed. M. Schermer, and W. Pinxten, 59–71. Dordrecht: Springer.

    Chapter  Google Scholar 

  • Hughes, J.C. 2013. Philosophical issues in dementia. Current Opinion in Psychiatry 26(3): 283–288.

    Article  Google Scholar 

  • Kaplan, D.M. 2005. Ricoeur Paul. In Encyclopedia of philosophy, vol. 8, ed. D.M. Borchert, 460–466. Detroit, MI: Thomson Gale, Macmillan Reference USA.

    Google Scholar 

  • Kuhn, D.R., D. Greiner, and L. Arseneau. 1998. Addressing hypersexuality in Alzheimer’s disease. Journal of Gerontological Nursing 24(4): 44–50.

    Article  Google Scholar 

  • Leder, D. 1990. The absent body. Chicago: The University of Chicago Press.

    Google Scholar 

  • Levinas, E. 1961. Totalité et infini. Essai sur l’exteriorité. The Hague: Martinus Nijhoff.

    Google Scholar 

  • Levinas, E. 1977. Du sacré au saint. Cinq nouvelles lectures talmudiques. Paris: Minuit.

    Google Scholar 

  • Lichtenberg, P.A. 1997. Clinical perspectives on sexual issues in nursing homes. Topics in Geriatric Rehabilitation 12(4): 1–10.

    Article  Google Scholar 

  • Lindsay, R.J. 2010. The need for more specific legislation in sexual consent capacity assessments for nursing home residents. Journal of Legal Medicine 31(3): 303–323.

    Article  Google Scholar 

  • Lingler, J.H. 2003. Ethical issues in distinguishing sexual activity from sexual maltreatment among women with dementia. Journal of Elder Abuse & Neglect 15(2): 85–102.

    Article  Google Scholar 

  • Mahieu, L., and C. Gastmans. 2012. Sexuality in institutionalized elderly persons: A systematic review of argument-based ethics literature. International Psychogeriatrics 24(3): 346–357.

    Article  Google Scholar 

  • Merleau-Ponty, M. 2002. Phenomenology of perception (trans: Smith, C.). London, New York: Routledge.

  • Nortvedt, P. 1996. Sensitive judgment: Nursing, moral philosophy and an ethics of care. Oslo: Tano Aschehoug.

    Google Scholar 

  • Pettersen, T. 2012. Conceptions of care: Altruism, feminism, and mature care. Hypatia 27(2): 366–389.

    Article  Google Scholar 

  • Phinney, A., and C.A. Chesla. 2003. The lived body in dementia. Journal of Aging Studies 17(3): 283–299.

    Article  Google Scholar 

  • Post, S.G. 1995. Dementia in our midst: The moral community. Cambridge Quarterly of Healthcare Ethics 4: 142–147.

    Article  Google Scholar 

  • Post, S.G. 2000. Commentary on “Sexuality and intimacy in the nursing home”. The Journal of Clinical Ethics 11(4): 314–317.

    Google Scholar 

  • Post, S.G. 2003. Dementia. In Encyclopedia of bioethics, 3rd ed, ed. S.G. Post, 634–642. New York, NY: Macmillan Reference USA.

    Google Scholar 

  • Psillos, S. 2011. An explorer upon untrodden ground: Pierce on abduction. In Handbook of the history of logic, vol. 10, ed. D.M. Gabbay, S. Hartmann, and J. Woods, 115–148., Inductive logic Oxford: Elsevier.

    Google Scholar 

  • Ricoeur, P. 1991. Narrative identity. Philosophy Today 35(1): 73–81.

    Article  Google Scholar 

  • Rosen, T., M.S. Lachs, and K. Pillemer. 2010. Sexual aggression between residents in nursing homes: Literature synthesis of an underrecognized problem. Journal of the American Geriatrics Society 58(10): 1070–1079.

    Article  Google Scholar 

  • Sabat, S.R. 2005. Capacity for decision-making in Alzheimer’s disease: Selfhood, positioning and semiotic people. Australian and New Zealand Journal of Psychiatry 39: 1030–1035.

    Article  Google Scholar 

  • Sabat, S.R., A. Johnson, C. Swarbrick, and J. Keady. 2011. The ‘demented other’ or simply ‘a person’? Extending the philosophical discourse of Naue and Kroll through the situated self. Nursing Philosophy 12(4): 282–292.

    Article  Google Scholar 

  • Sartre, J.-P. 1943. L’Être et le néant: Essai d’ontologie phénoménologique. Paris: Gallimard.

    Google Scholar 

  • Schillmeier, M.W.J. 2009. Actor-networks of dementia. In Un/knowing bodies, ed. J.E. Latimer, and M.W.J. Schillmeier, 141–158. Oxford: Blackwell Publishing Ltd/The Sociological Review.

    Google Scholar 

  • Selling, J. 1998. The human person. In Christian ethics: An introduction, ed. B. Hoose, 95–109. London: Cassel.

    Google Scholar 

  • Sheehan, T. 2005. Heidegger, Martin (1889–1976). In The shorter routledge encyclopedia of philosophy, ed. E. Craig, 354–366. London: Routledge.

    Google Scholar 

  • Slatman, J., A. Halsema, and G. Widdershoven. 2010. Sex and enhancement: A phenomenological-existential view. The American Journal of Bioethics 10(7): 20–22.

    Article  Google Scholar 

  • Steeman, E., B. Dierckx de Casterlé, J. Godderis, and M. Grypdonck. 2006. Living with early-stage dementia: A review of qualitative studies. Journal of Advanced Nursing 54(6): 722–738.

    Article  Google Scholar 

  • Sunstein, C.R. 1995. Incompletely theorized agreements. Harvard Law Review 108(7): 1733–1772.

    Article  Google Scholar 

  • Tarzia, L., D. Fetherstonhaugh, and M. Bauer. 2012. Dementia, sexuality and consent in residential aged care facilities. Journal of Medical Ethics 38(10): 609–613.

    Article  Google Scholar 

  • Van Heijst, A. 2011. Professional loving care: An ethical view on the healthcare sector. Leuven: Peeters.

    Google Scholar 

  • Verhack, I. 2000. De mens en zijn onrust: Over het raadsel van de beweging. Leuven: Acco.

    Google Scholar 

  • Visker, R. 1997. The core of my opposition to Levinas. A clarification for Richard Rorty. Ethical Perspectives 4(2): 154–170.

    Article  Google Scholar 

  • Visker, R. 2003. Is ethics fundamental? Questioning Levinas on irresponsibility. Continental Philosophy Review 36(3): 263–302.

    Article  Google Scholar 

  • Visker, R. 2005a. The strange(r) within me. Ethical Perspectives 12(4): 425–441.

    Article  Google Scholar 

  • Visker, R. 2005b. Vreemd gaan en vreemd blijven. Filosofie van de multiculturaliteit. Amsterdam: SUN.

    Google Scholar 

  • Widdershoven, G. 2003. Understanding dementia: A hermeneutic perspective. In Nature and narrative: An introduction to the new philosophy of psychiatry, ed. B. Fulford, 103–111. Oxford: Oxford University Press.

    Chapter  Google Scholar 

  • Widdershoven, G., and R.L.P. Berghmans. 2006. Meaning-making in dementia: A hermeneutic perspective. In Dementia: Mind, meaning, and the person, ed. J.C. Hughes, L. Stephen, and S.R. Sabat, 179–191. Oxford: Oxford University Press.

    Google Scholar 

  • Zaner, R.M. 1964. The problem of embodiment. Some contributions to a phenomenology of the body. The Hague: Martinus Nijhoff.

    Google Scholar 

  • Zaner, R.M. 2003. Body. In Encyclopedia of bioethics, 3rd ed, ed. S.G. Post, 320–327. New York, NY: Macmillan Reference USA.

    Google Scholar 

Download references

Acknowledgments

The authors would like to express their gratitude to Prof. dr. Yvonne Denier and the anonymous reviewers for their guiding assistance in bringing this paper to higher level.

Author information

Authors and Affiliations

  1. Faculty of Medicine, Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium

    Lieslot Mahieu & Chris Gastmans

  2. Institute of Philosophy, Centre for Ethics, Social and Political Philosophy, KU Leuven, Leuven, Belgium

    Luc Anckaert

Authors
  1. Lieslot Mahieu
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Luc Anckaert
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Chris Gastmans
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Lieslot Mahieu.

Additional information

“Eternal sunshine of the spotless mind” is taken from the ‘Eloise to Abelard’ poem written by Alexander Pope in the eighteenth century. The same line was borrowed in 2004 as title for a romantic science fiction film about a couple that (voluntarily) erased each other from their memories when their relationship went wrong. The story told raises questions as to whether (in)voluntary loss of memory pertaining to the realm of broken relationships and former partners is truly liberating or not? This liberating power is exactly what the original poem alludes to. Both the poem and the movie explore the complex relationship between love—the joy and perhaps also the pain it entails—, memory and identity. In doing so it makes you think about the impact dementia or involuntary loss of memory might have on love and relationships.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Mahieu, L., Anckaert, L. & Gastmans, C. Eternal sunshine of the spotless mind? An anthropological-ethical framework for understanding and dealing with sexuality in dementia care. Med Health Care and Philos 17, 377–387 (2014). https://doi.org/10.1007/s11019-014-9545-1

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11019-014-9545-1

Keywords

Search

Navigation