Hostname: page-component-586b7cd67f-r5fsc Total loading time: 0 Render date: 2024-11-20T07:32:32.412Z Has data issue: false hasContentIssue false
  • English
  • Français

Love between couples living with Alzheimer's disease: narratives of spouse care-givers

Published online by Cambridge University Press:  26 October 2017

ORIT SHAVIT ,
AARON BEN-ZE'EV  and
ISRAEL DORON
ORIT SHAVIT*
Affiliation:
Department of Gerontology, University of Haifa, Israel. Department of Philosophy, University of Haifa, Israel.
AARON BEN-ZE'EV
Affiliation:
Department of Philosophy, University of Haifa, Israel.
ISRAEL DORON
Affiliation:
Department of Gerontology, University of Haifa, Israel.
*
Address for correspondence: Orit Shavit, Department of Gerontology, University of Haifa, Haifa, Israel E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

The aim of this interdisciplinary study is to describe and analyse the meaning of love in relationships between couples living with Alzheimer's disease (AD). Despite the wealth of studies describing relationships in the face of AD, little is known about the experience and changing meaning of ‘love’ between spouses when one of them is suffering from AD. A qualitative narrative approach was used to capture what love means for couples when one spouse is living with AD. A combination of open discussion along with a semi-guided interview was conducted with N = 16 spouses of persons living with AD. Data were analysed using Thematic Analysis. A leading theme that emerges from the interviews is that AD provides a significant indicator of the meaning and understanding of the experience of love. Five major types of relationship developments occurred after the disease emerged: love died, love became weaker, love did not change, love was enhanced and the spouse fell in love again. The need for further research is discussed. The findings of this study offer an additional perspective to the existing literature, thereby providing a more comprehensive outlook on marital relationships within the context of AD.

Keywords

Alzheimer's diseaseloverelationshipsmeaningspouses
Type
Article
Information
Ageing & Society , Volume 39 , Issue 3 , March 2019 , pp. 488 - 517
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ageing International 2000. Progress report on Alzheimer's disease: taking the next steps. Ageing International, 26, 1, 38–125.Google Scholar
Alzheimer's Association 2014. 2014 Alzheimer's Association report. Alzheimer's disease facts and figures. Alzheimer's and Dementia, 10, 2, e47–92.Google Scholar
Baumeister, R. F. and Bratslavsky, E. 1999. Passion, intimacy, and time: passionate love as a function of change in intimacy. Personality and Social Psychology Review, 3, 1, 49–67.Google Scholar
Baumeister, R. F. and Leary, M. R. 1995. The need to belong: desire for interpersonal attachments as a fundamental human motivation. Psychological Bulletin, 117, 3, 497–529.Google Scholar
Baumeister, R. F., Vohs, K. D., Aker, J. L. and Garbinsky, E. N. 2013. Some key differences between a happy life and a meaningful life. Journal of Positive Psychology, 8, 6, 505–16.Google Scholar
Beeson, R. A., Horton-Deutsch, S., Farran, C. and Neundorfer, M. 2000. Loneliness and depression in caregivers of persons with Alzheimer's disease or related disorders. Issues in Mental Health Nursing, 21, 8, 779–806.Google Scholar
Ben-Ze'ev, A. 2017. Does loving longer mean loving more? On the nature of enduring affective attitudes. Philosophia, 45.Google Scholar
Ben-Ze'ev, A. and Goussinsky, R. 2008. In the Name of Love: Romantic Ideology and its Victims. Oxford University Press, Oxford.Google Scholar
Ben-Ze'ev, A. and Krebs, A. 2017. Love in time: is love best when it is fresh? In Grau, C. and Smuts, A. (eds), Oxford Handbook of Philosophy of Love. Oxford University Press, Oxford.Google Scholar
Berscheid, E. 2010. Love in the fourth dimension. Annual Review of Psychology, 61, 1–25.Google Scholar
Bowlby, J. 1973. Affectional bonds: their nature and origin. In Weiss, R. S. (ed.), Loneliness: The Experience of Emotional and Social Isolation. MIT Press, Cambridge, Massachusetts, 38–52.Google Scholar
Boyce, C. and Neale, P. 2006. Conducting in-depth interviews: a guide for designing and conducting in-depth interviews for evaluation input. Pathfinder International Tool Series: Monitoring and Evaluation, 2, 1–12.Google Scholar
Boylstein, C. and Hayes, J. 2012. Reconstructing marital closeness while caring for a spouse with Alzheimer's. Journal of Family Issues, 33, 5, 584–612.Google Scholar
Boylstein, C. and Rittman, M. 2003. The importance of narratives in stroke rehabilitation. Generations, 27, 3, 49–54.Google Scholar
Bransen, J. 2006. Selfless self-love. Ethical Theory and Moral Practice, 9 1, 3–25.Google Scholar
Brogaard, B. 2015. On Romantic Love: Simple Truths About a Complex Emotion. Oxford University Press, Oxford.Google Scholar
Bruner, J. S. 1990. Acts of Meaning. Harvard University Press, Cambridge, Massachusetts.Google Scholar
Buber, M. 1958. I and Thou. Charles Scribner's Sons, New York.Google Scholar
Bury, M. 2001. Illness narratives: fact or fiction? Sociology of Health & Illness, 23, 3, 263–85.Google Scholar
Carstensen, L. L. and Charles, S. T. 1998. Emotion in the second half of life. Current Directions in Psychological Science, 7, 5, 144–9.Google Scholar
Charles, S. T. and Carstensen, L. L. 2002. Marriage in old age. In Yalom, M., Carstensen., L. L., Freedman, E. and Gelpi, B. (eds), Inside the American Couple. University of California Press, Berkeley, California, 236–54.Google Scholar
Charles, S. T. and Carstensen, L. L. 2010. Social and emotional aging. Annual Review of Psychology, 61, 383–409.Google Scholar
Charles, S. T. and Luong, G. 2013. Emotional experience across adulthood: the theoretical model of strength and vulnerability integration. Current Directions in Psychological Science, 22, 6, 443–8.Google Scholar
Charles, S. T., Piazza, J. R., Mogle, J. A., Urban, E. J., Sliwinski, M. J. and Almeida, D. M. 2015. Age differences in emotional well-being vary by temporal recall. Journals of Gerontology: Psychological Sciences and Social Sciences, 71, 5, 798–807.Google Scholar
Charmaz, K. 1988. New ethnographies. Journal of Contemporary Ethnography, 16, 4, 515–7.Google Scholar
Chesla, C., Martinson, I. and Muwaswes, M. 1994. Continuities and discontinuities in family members’ relationships with Alzheimer's patients. Family Relations, 43, 1, 3–9.Google Scholar
Craig, D., Mirakhur, A., Hart, D. J., McIlroy, S. P. and Passmore, A. P. 2005. A cross-sectional study of neuropsychiatric symptoms in 435 patients with Alzheimer's disease. American Journal of Geriatric Psychiatry, 13, 6, 460–8.Google Scholar
Davies, H. D., Clovis, C. L., Ingram, L., Priddy, J. M. and Tinklenberg, J. R. 2001. Stages of resolution: young adult children coping with an Alzheimer's disease parent. Clinical Gerontologist, 22, 2, 43–58.Google Scholar
Davies, H. D., Zeiss, A. M., Shea, E. A. and Tinklenberg, J. R. 1998. Sexuality and intimacy in Alzheimer's patients and their partners. Sexuality and Disability, 16, 3, 193–203.Google Scholar
De Sousa, R. 2015. Love: A Very Short Introduction. Oxford University Press, Oxford.Google Scholar
Diener, E. and Suh, M. E. 1997. Subjective well-being and age: an international analysis. Annual Review of Gerontology and Geriatrics, 17, 304–24.Google Scholar
Erol, R., Brooker, D. and Peel, E. 2016. The impact of dementia on women internationally: an integrative review. Health Care for Women International, 37, 12, 1320–41.Google Scholar
Evans, D. and Lee, E. 2014. Impact of dementia on marriage: a qualitative systematic review. Dementia, 13, 3, 330–49.Google Scholar
Finkel, E. J., Hui, C. M., Carswell, K. L. and Larson, G. M. 2014. The suffocation of marriage: climbing Mount Maslow without enough oxygen. Psychological Inquiry, 25, 1, 1–41.Google Scholar
Fisher, H. 2010. Why Him? Why Her? How to Find and Keep Lasting Love. Henry Holt, New York.Google Scholar
Førsund, L. H., Skovdahl, K., Kiik, R. and Ytrehus, S. 2015. The loss of a shared lifetime: a qualitative study exploring spouses’ experiences of losing couplehood with their partner with dementia living in institutional care. Journal of Clinical Nursing, 24, 1/2, 121–30.Google Scholar
Frankfurt, H. G. 2004. The Reasons for Love. Princeton University Press, Princeton, New Jersey.Google Scholar
Galimberti, D. and Scarpini, E. 2012. Progress in Alzheimer's disease. Journal of Neurology, 259, 2, 201–11.Google Scholar
Gilbert, M. 1989. On Social Facts. Princeton University Press, Princeton, New Jersey.Google Scholar
Gilbert, M. 2014. How we feel: understanding everyday collective emotion ascription. In Von Scheve, C. and Salmela, M. (eds), Collective Emotions: Perspectives from Psychology, Philosophy and Sociology. Oxford University Press, Oxford, 17–31.Google Scholar
Glaser, B. G. 1969. The constant comparative method of qualitative analysis. In McCall, G. J. and Simmons, J. L. (eds), Issues in Participant Observation. AddisonWesley, Reading, Massachusetts, 216–28.Google Scholar
Glaser, B. G. 1978. Theoretical Sensitivity: Advances in the Methodology of Grounded Theory. Sociology Press, Mill Valley, California.Google Scholar
Gottman, J. 1995. Why Marriages Succeed or Fail: And How You Can Make Yours Last. Bloomsbury, London.Google Scholar
Gottman, J. M. 1999. The Marriage Clinic. Norton, New York.Google Scholar
Grote, N. K. and Frieze, I. H. 1994. The measurement of friendship-based love in intimate relationships. Personal Relationships, 1, 275–300.Google Scholar
Harcourt, E. 2011. Self-love and practical rationality. In Morality and the Emotions. Oxford University Press, Oxford, 82–94.Google Scholar
Harris, P. B. 2009. Intimacy, sexuality and early onset dementia: the changing marital relationship. Gerontologist, 49, 23, 63–77 .Google Scholar
Hatfield, E. and Rapson, R. L. 1993. Love and attachment processes. In Lewis, M. and Haviland, J. M. (eds), Handbook of Emotions. Guilford Press, New York, 595–604.Google Scholar
Hatfield, E. and Rapson, R. L. 2009. The neuropsychology of passionate love. In Marazziti, D. (ed.), Neuropsychology of Social Relationships. Nova Sci, Hauppauge, New York, 1–17.Google Scholar
Hayes, J., Boylstein, C. and Zimmerman, M. K. 2009. Living and loving with dementia: negotiating spousal and caregiver identity through narrative. Journal of Aging Studies, 23, 1, 48–59.Google Scholar
Hellström, I., Eriksson, H. and Sandberg, J. 2014. Chores and sense of self: gendered understandings of voices of older married women with dementia. International Journal of Older People Nursing, 10, 2, 127–35.Google Scholar
Hellström, I., Nolan, M. and Lundh, U. 2007. Sustaining couplehood: ‘spouses’ strategies for living positively with dementia. Dementia, 6, 3, 383–409.Google Scholar
Helm, B. W. 2010. Love, Friendship, and the Self: Intimacy, Identification, and the Social Nature of Persons. Oxford University Press, Oxford.Google Scholar
Hinton, W. L. and Levkoff, S. 1999. Constructing Alzheimer's: narratives of lost identities, confusion and loneliness in old age. Culture Medicine and Psychiatry, 23, 4, 453–75.Google Scholar
Holzer, S., Warner, J. P. and Iliffe, S. 2013. Diagnosis and management of the patient with suspected dementia in primary care. Drugs & Aging, 30, 9, 667–76.Google Scholar
Hubbard, G., Downs, M. G. and Tester, S. 2003. Including older people with dementia in research: challenges and strategies. Aging & Mental Health, 7, 5, 351–62.Google Scholar
Hyden, L. C. and Nilsson, E. 2015. Couples with dementia: positioning the ‘we’. Dementia (London), 14, 6, 716–33.Google Scholar
Jansson, W., Nordberg, G. and Grafström, M. 2001. Patterns of elderly spousal caregiving in dementia care: an observational study. Journal of Advanced Nursing, 34, 6, 804–12.Google Scholar
Kaplan, L. 2001. A couplehood typology for spouses of institutionalized persons with Alzheimer's disease: perceptions of ‘We’–‘I’. Family Relations, 50, 1, 87–98.Google Scholar
Kayser, K. 1993. When Love Dies: The Process of Marital Disaffection. Guilford, New York.Google Scholar
Krebs, K. 2011. The phenomenology of shared feelings. Appraisal, 8, 3, 35–50.Google Scholar
Krebs, A. 2014. Between I and thou – on the dialogical nature of love. In Maurer, C., Milligan, T. and Pacovská, K. (eds), Love and its Objects. Palgrave Macmillan, London, 7–24.Google Scholar
Krebs, A. 2015. Zwischen Ich und Du. Eine dialogische Philosophie der Liebe. Suhrkamp, Frankfurt, Germany.Google Scholar
Laurenceau, J. P., Riviera, L. M., Schaffer, A. R. and Pietromonaco, P. R. 2004. Intimacy as an interpersonal process: current status and future directions. In Mashek, D. and Aron, A. (eds), Handbook of Closeness and Intimacy. Lawrence Erlbaum, Mahwah, New Jersey, 61–78.Google Scholar
Lawn, S. and McMahon, J. 2014. The importance of relationship in understanding the experiences of spouse mental health carers. Qualitative Health Research, 24, 2, 254–66.Google Scholar
Lévinas, E. 1974. Otherwise than Being or Beyond Essence. Duquesne University Press, Pittsburgh, Pennsylvania.Google Scholar
Lévinas, E. 1961. Totality and Infinity. Duquesne University Press, Pittsburgh, Pennsylvania.Google Scholar
Lewis, R. D. H. 1998. The impact of the marital relationship on the experience of caring for an elderly spouse with dementia. Ageing & Society, 18, 2, 209–31.Google Scholar
Liamputtong, P. and Ezzy, D. 2005. Qualitative Research Methods. Second edition, Oxford University Press, Melbourne.Google Scholar
Livingston, G., Sommerlad, A., Orgeta, V., Costafreda, S. G., Huntley, J., Ames, D., Ballard, C., Banerjee, S., Burns, A., Cohen-Mansfield, J., Cooper, C., Fox, N., Gitlin, L., Howard, R., Kales, H., Larson, E., Ritchie, K., Rookwood, K., Sampson, E., Samus, Q., Schneider, L., Selbeck, G., Teri, L. and Mukadam, N. 2017. Dementia prevention, intervention, and care. The Lancet. Published online, doi:10.1016/S0140-6736(17)31363-6.Google Scholar
Loboprabhu, S., Molinari, V., Arlinghaus, K., Barr, E. and Lomax, J. 2005. Spouses of patients with dementia: how do they stay together ‘till death do us part’? Journal of Gerontological Social Work, 44, 3/4, 161–74.Google Scholar
Mathers, C. and Leonardi, M. 2000. Global Burden of Dementia in the Year 2000: Summary of Methods and Data Sources. World Health Organization, Geneva.Google Scholar
McCabe, M., You, E. and Tatangelo, G. 2016. Hearing their voice: a systematic review of dementia family caregivers’ needs. The Gerontologist, 56, 5, e70–e88.Google Scholar
Merino, N. 2004. The problem with ‘we’: rethinking joint identity in romantic love. Journal of Social Philosophy, 35, 123–32.Google Scholar
Mishler, E. G. 1986. Research Interviewing: Context and Narrative. Harvard University Press, Cambridge, Massachusetts.Google Scholar
Mitchell, S. A. 2002. Can Love Last? The Fate of Romance Over Time. Norton, New York.Google Scholar
Morse, J. 2000. Determining sample size. Qualitative Health Research, 10, 1, 3–5.Google Scholar
Nozick, R. 1989. Love's bond. In The Examined Life: Philosophical Meditations. Simon and Schuster, New York, 68–86.Google Scholar
O'Leary, K. D., Acevedo, B. P., Aron, A., Huddy, L. and Mashek, D. 2012. Is long-term love more than a rare phenomenon? If so, what are its correlates? Social Psychological and Personality Science, 3, 241–9.Google Scholar
Patton, M. Q. 2002. Qualitative Research & Evaluation Methods. Third edition, Sage, Thousand Oaks, California.Google Scholar
Piqueras, M. O. 2016. The loneliness of the aging in two contemporary novels. The Gerontologist, 56, 2, 193–200.Google Scholar
Portmann, J. 2000. Like marriage, without the romance. Journal of Medical Ethics, 26, 3, 194–7.Google Scholar
Portmann, J. 2013. The Ethics of Sex and Alzheimer's. Routledge, New York.Google Scholar
Potgieter, J. C. and Heyns, P. M. 2006. Caring for a spouse with Alzheimer's disease: stressors and strengths. South African Journal of Psychology, 36, 3, 547–63.Google Scholar
Preeyam, K. P., Troyer, A. K., Maione, A. M. and Murphy, K. J. 2016. The impact of memory change on daily life in normal aging and mild cognitive impairment. The Gerontologist, 56, 5, 877–85.Google Scholar
Riessman, C. K. 2008. Narrative Methods for the Human Sciences. Sage, Los Angeles.Google Scholar
Ryff, C. D., Love, G. D., Urry, H. L., Muller, D., Rosenkranz, M. A., Friedman, E. M., Davidson, R. J. and Singer, B. 2006. Psychological well-being and ill-being: do they have distinct or mirrored biological correlates? Psychotherapy and Psychosomatics, 75, 2, 85–95.Google Scholar
Ryff, C. D., Singer, B. H. and Love, G. D. 2004. Positive health: connecting well-being with biology. Philosophical Transactions of the Royal Society of London Series B: Biological Sciences, 359, 1449, 1383–94.Google Scholar
Scheler, M. 1954. The Nature of Sympathy. Routlege, London.Google Scholar
Schnarch, D. 1997. Passionate Marriage. Norton, New York.Google Scholar
Schroevers, M., Ranchor, A. V. and Sanderman, R. 2006. Adjustment to cancer in the 8 years following diagnosis: a longitudinal study comparing cancer survivors with healthy individuals. Social Science & Medicine, 63, 3, 598–610.Google Scholar
Searle, J. 1990. Collective intentions and actions. In Cohen, P., Morgan, J. and Pollack, M. (eds), Intentions in Communication. MIT Press, Cambridge, Massachusetts, 401–15.Google Scholar
Shanley, C., Russell, C., Middleton, H. and Simpson-Young, V. 2011. Living through end-stage dementia: the experiences and expressed needs of family carers (clinical report). Dementia, 10, 3, 325–40.Google Scholar
Shaver, P. R., Schwartz, J., Kirson, D. and O'Connor, C. 1987. Emotion knowledge: further exploration of a prototype approach. Journal of Personality and Social Psychology, 52, 6, 1061–86.Google Scholar
Sherman, N. 1987. Aristotle on friendship and the shared life. Philosophy and Phenomenological Research, 47, 4, 589–613.Google Scholar
Sherman, N. 1993. The virtues of common pursuit. Philosophy and Phenomenological Research, 53, 277–99.Google Scholar
Shmotkin, D. and Shrira, A. 2012. Happiness and suffering in the life story: an inquiry into conflicting expectations concerning the association of perceived past with present subjective well-being in old age. Journal of Happiness Studies, 13, 3, 389–409.Google Scholar
Simpson, P., Horne, M., Brown, L. J., Wilson, C. B., Dickinson, T. and Torkington, K. 2015. Old(er) care home residents and sexual/intimate citizenship. Ageing & Society, 37, 2, 243–65.Google Scholar
Solomon, R. 1988. About Love. Reinventing Romance for Our Times. Simon and Schuster, New York.Google Scholar
Sternberg, R. J. 1986. A triangular theory of love. Psychological Review, 93, 119–35.Google Scholar
Tokatli, R. 1997. Old age in post-modern society: a ‘situational potential’ for new learning. Surveys and Reviews in Gerontology, 104, 6–13.Google Scholar
VanLaningham, J., Johnson, D. R. and Amato, P. 2001. Marital happiness, marital duration, and the U-shaped curve: evidence from a five-wave panel study. Social Forces, 79, 4, 1313–41.Google Scholar
Velleman, J. D. 2006. Love as a moral emotion. In Self to Self: Selected Essays. Cambridge University Press, Cambridge, 70–109.Google Scholar
Walters, A. H., Oyebode, J. R. and Riley, G. A. 2010. The dynamics of continuity and discontinuity for women caring for a spouse with dementia. Dementia, 9, 2, 169–89.Google Scholar
Wherry, M. 2013. Introduction: love and romance in American culture. Journal of American Culture, 36, 1, 1–5.Google Scholar
Williamson, G. M. and Schulz, R. 1990. Relationship orientation, quality of prior relationship, and distress among caregivers of Alzheimer's patients. Psychology and Aging, 5, 4, 502–9.Google Scholar
Wright, L. K. 1991. The impact of Alzheimer's disease on the marital relationship. Gerontologist, 31, 2, 224–37.Google Scholar
Youell, J., Callaghan, J. E. and Buchanan, K. 2016. ‘I don't know if you want to know this’: carers’ understandings of intimacy in long-term relationships when one partner has dementia. Ageing & Society, 36, 5, 946–67.Google Scholar