Hostname: page-component-cd9895bd7-mkpzs Total loading time: 0 Render date: 2024-12-25T20:29:12.113Z Has data issue: false hasContentIssue false
  • English
  • Français

The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia

Published online by Cambridge University Press:  19 March 2013

Shelley Peacock ,
Wendy Duggleby  and
Priscilla Koop
Shelley Peacock*
Affiliation:
College of Nursing, University of Saskatchewan, St. Andrew's College, Saskatoon SK, Canada
Wendy Duggleby
Affiliation:
Faculty of Nursing, University of Alberta, Edmonton AB, Canada
Priscilla Koop
Affiliation:
Faculty of Nursing, University of Alberta, Edmonton AB, Canada
*
Address correspondence and reprint requests to: Shelley Peacock, College of Nursing, University of Saskatchewan, 414 St. Andrew's College, 1121 College Drive, Saskatoon SK S7N 0W3, Canada. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia.

Method:

This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed.

Results:

Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships.

Significance of results:

An understanding from bereaved caregivers’ perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.

Keywords

Dementiaend-of-life careFamily caregiversPhenomenology
Type
Original Articles
Information
Palliative & Supportive Care , Volume 12 , Issue 2 , April 2014 , pp. 117 - 126
Copyright
Copyright © Cambridge University Press 2013 

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

REFERENCES

Addington-Hall, J. & McPherson, C. (2001). After-death interviews with surrogates/bereaved family members: Some issues of validity. Journal of Pain and Symptom Management, 22, 784–790.CrossRefGoogle ScholarPubMed
Allen, R., Kwak, J., Lokken, K., et al. (2003). End-of-life issues in the context of Alzheimer's disease. Alzheimer's Care Quarterly, 4, 312–330.Google ScholarPubMed
Alzheimer's Society of Canada (2010). Rising Tide: The Impact of Dementia on Canadian Society. Toronto, ON: Alzheimer's Society of Canada.Google Scholar
Aminoff, B. & Adunsky, A. (2006). Their last 6 months: Suffering and survival of end-stage dementia patients. Age and Ageing, 35, 597–601.CrossRefGoogle ScholarPubMed
Andershed, B. (2006). Relatives in end-of-life- care – part 1: A systematic review of the literature the five years, January 1999–February 2004. Journal of Clinical Nursing, 15, 1158–1169.CrossRefGoogle ScholarPubMed
Benner, P. (1994). The tradition and skill of interpretive phenomenology in studying health, illness, and caring practices. In Interpretive Phenomenology. Benner, P. (ed.). Thousand Oaks, CA: Sage Publications, pp. 99–127.Google Scholar
Benner, P. & Gordon, S. (1996). Caring practice. In Caregiving: Readings in Knowledge, Practice, Ethics, and Politics. Gordon, S., Benner, P. & Noddings, N. (eds.). Philadelphia: University of Pennsylvania Press, pp. 40–55.Google Scholar
Buber, M. (1970). I and Thou (Kaufmann, W., Trans.). New York: Simon & Schuster.Google Scholar
Chene, B. (2006). Dementia residential placement. Qualitative Social Work, 5, 187–215.CrossRefGoogle Scholar
Coventry, P., Grande, G., Richards, D., et al. (2005). Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: A systematic review. Age and Aging, 34, 218–227.CrossRefGoogle ScholarPubMed
Decima Research for Health Canada (2002). National Profile of Family Caregivers in Canada – 2002. Final Report. Ottawa: Decima Research Incorporated, prepared for Health Canada.Google Scholar
DeMiglio, L. & Williams, A. (2008). A sense of place, a sense of well-being. In Sense of Place, Health and Quality of Life. Eyles, J. & Williams, A. (eds.). Burlington, VT: Ashgate Publishing, pp. 15–30.Google Scholar
Fast, J. (2005). Caregiving: A fact of life. Transition Magazine, 35(2). http://www.vifamily.ca/library/transition/352/352.html.Google Scholar
Gill, T., Gahbauer, E., Han, L., et al. (2010). Trajectories of disability in the last year of life. New England Journal of Medicine, 362, 1173–1180.CrossRefGoogle ScholarPubMed
Gladstone, J., Dupuis, S. & Wexler, E. (2006). Changes in family involvement following a relative's move to a long-term care facility. Canadian Journal on Aging, 25, 93–106.CrossRefGoogle ScholarPubMed
Grande, G., Stajduhar, K., Aoun, S., et al. (2009). Supporting lay carers in end of life care: Current gaps and future priorities. Palliative Medicine, 23, 339–344.CrossRefGoogle ScholarPubMed
Hebert, R. & Schultz, R. (2006). Caregiving at the end of life. Journal of Palliative Medicine, 9, 1174–1187.CrossRefGoogle ScholarPubMed
Heidegger, M. (1927/1962). Being and Time (Macquarrie, J. & Robinson, E., Trans.). New York: Harper & Row.Google Scholar
Hoffman, P. (2006). Death, time, history: Division II of Being and Time. In The Cambridge Companion to Heidegger, 2nd ed.Guignon, C. (ed.) New York: Cambridge University Press, pp. 222–240.CrossRefGoogle Scholar
Jo, S., Brazil, K., Lohfeld, L., et al. (2007). Caregiving at the end of life: Perspectives from spousal caregivers and care recipients. Palliative and Supportive Care, 5, 11–17.CrossRefGoogle ScholarPubMed
Kelley, L.S., Specht, J.K. & Maas, M. (2000). Family involvement in care for individuals with dementia protocol. Journal of Gerontological Nursing, 26, 13–21.CrossRefGoogle Scholar
Mitchell, S., Teno, J., Kiely, D., et al. (2009). The clinical course of advanced dementia. New England Journal of Medicine, 361, 1529–1538.CrossRefGoogle ScholarPubMed
Munhall, P. (1994). Revisioning Phenomenology: Nursing and Health Science Research. New York: National League for Nursing Press.Google ScholarPubMed
Munhall, P. (2007). A phenomenological method. In Nursing Research: A Qualitative Perspective, 4th ed.Munhall, P. (ed.). Toronto: Jones and Bartlett Publishers, pp. 143–210.Google Scholar
National Institutes of Health. (2004). Improving end-of-life care. NIH Consensus and State-of-the-Science Statements, 21, 1–28. http://consensus.nih.gov/2004/2004EndOfLifeCareSOS24PDF.pdf.Google Scholar
Nouwen, H. (2005). The Dance of Life: Weaving Sorrows and Blessings Into One Joyful Step. Notre Dame, IN: Ava Maria Press.Google Scholar
Olthuis, J. (1997). Face-to-face: Ethical asymmetry or the symmetry of mutuality? In Knowing Otherwise: Philosophy at the Threshold of Spirituality. New York: Fordham University Press, pp. 131–158.CrossRefGoogle Scholar
Ory, M., Yee, J., Tennstedt, S., et al. (2000). The extent and impact of dementia care: Unique challenges experienced by family caregivers. In Handbook of Dementia Caregiving: Evidenced-Based Interventions for Family Caregivers. Schulz, R. (ed.). New York: Springer Publishing, pp. 1–32.Google Scholar
Peacock, S. (2012). The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review. Palliative & Supportive Care, doi: 10.1017/S1478951512999831.Google ScholarPubMed
Rankin, I. (1999). The Hanging Garden. London: Orion Books Limited.Google Scholar
Rilke, M. (1986). Letters to a Young Poet (Mitchell, S., Trans.). New York: Vintage.Google Scholar
Sandelowski, M. (1986). The problem of rigor in qualitative research. Advances in Nursing Science, 8, 27–37.CrossRefGoogle ScholarPubMed
Saunders, C. (1978). The philosophy of terminal care. In The Management of Terminal Diseases. London: Edward Arnold Publishers Limited, pp. 193–202.Google Scholar
Schulz, R. & Martire, L. (2004). Family caregiving of persons with dementia. American Journal of Geriatric Psychiatry, 12, 240–249.CrossRefGoogle ScholarPubMed
Shanley, C., Russell, C., Middleton, H., et al. (2011). Living through end-stage dementia: The experiences and expressed needs of family carers. Dementia, 10, 325–340.CrossRefGoogle Scholar
Small, N., Froggatt, K. & Downs, M. (2007). Living and Dying with Dementia: Dialogues About Palliative Care. New York: Oxford University Press.CrossRefGoogle Scholar
Stajduhar, K., Martin, W. & Cairns, M. (2010). What makes grief difficult? Perspectives from bereaved family caregivers and healthcare providers of advanced cancer patients. Palliative & Supportive Care, 8, 277–289.CrossRefGoogle ScholarPubMed
Sutherland, N. (2009). The meaning of being in transition to end-of-life care for female partners of spouses with cancer. Palliative & Supportive Care, 7, 423–433.CrossRefGoogle ScholarPubMed
van Manen, M. (1990). Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. London, ON: State University of New York.Google Scholar
Volicer, L. (2001). Management of severe Alzheimer's Disease and end–of–life issues. Clinics in Geriatric Medicine, 17, 377–391.CrossRefGoogle ScholarPubMed
Waldrop, D. & Kusmaul, N. (2011). The living–dying interval in nursing home–based end-of-life care: Family caregivers’ experiences. Journal of Gerontological Social Work, 54, 768–787.CrossRefGoogle ScholarPubMed
Wong, W.K., Ussher, J. & Perz, J. (2009). Strength through adversity: Bereaved cancer carers’ accounts of rewards and personal growth from caring. Palliative & Supportive Care, 7, 187–196.CrossRefGoogle ScholarPubMed