Skip to main content
PMC home page
American Journal of Alzheimer's Disease and Other Dementias logoLink to American Journal of Alzheimer's Disease and Other Dementias
. 2010 Feb;25(1):9–17. doi: 10.1177/1533317509333902

Review: The Role of Grief in Dementia Caregiving

Brigg B Noyes 1, Robert D Hill 2, Bret L Hicken 3, Marilyn Luptak 4, Randall Rupper 5, Nancy K Dailey 6, Byron D Bair 7
PMCID: PMC10845699  PMID: 19386994

Abstract

The literature examining issues of caregiver stress, burden, or depression has focused on the stress-process model of caregiving, which posits that there are characteristics inherent in dementia and in the course of caregiving for a person with dementia that can cause stress in the caregiver’s life. A more recent literature has emerged that argues that issues of loss and grief play a significant role in a caregiver’s ability to cope with the stressors of caregiving. This article reviews the caregiver stress and grief literatures, and proposes a conceptual model of dementia caregiving that outlines pathways of stress and grief in dementia caregiving. Issues specific to caregiver grief are proposed for future research and intervention design.

Keywords: dementia, caregiving, grief, stress, caregiver support

Full Text

The Full Text of this article is available as a PDF (176.7 KB).

Contributor Information

Brigg B. Noyes, George E. Wahlen Department of Veterans Affairs Medical Center, VA Salt Lake City Health Care System, Geriatric Research, Education and Clinical Center, Salt Lake City, Utah, briggb@alum.dartmouth.org .

Robert D. Hill, Department of Educational Psychology, University of Utah, Salt Lake City, Utah.

Bret L. Hicken, George E. Wahlen Department of Veterans Affairs Medical Center, VA Salt Lake City Health Care System, Geriatric Research, Education and Clinical Center, Salt Lake City, Utah.

Marilyn Luptak, University of Utah College of Social Work, Salt Lake City, Utah.

Randall Rupper, George E. Wahlen Department of Veterans Affairs Medical Center, VA Salt Lake City Health Care System, Geriatric Research, Education and Clinical Center, Salt Lake City, Utah.

Nancy K. Dailey, George E. Wahlen Department of Veterans Affairs Medical Center, VA Salt Lake City Health Care System, Geriatric Research, Education and Clinical Center, Salt Lake City, Utah.

Byron D. Bair, Geriatric Internal Medicine & Geriatric Psychiatry, University of Utah School of Medicine, Salt Lake City, Utah.

References

  1. Family Caregiver Alliance. Fact Sheet: Selected Caregiver Statistics. San Francisco, CA: Family Caregiver Alliance; 2001. [Google Scholar]
  2. Family Caregiver Alliance. Caregiver Assessment: Principles, Guidelines and Strategies for Change. Report from a national consensus development conference. Vol I. San Francisco, CA: Family Caregiver Alliance; 2006. [Google Scholar]
  3. Schulz R., Martire L. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry. 2004;12(3):240-249. [PubMed] [Google Scholar]
  4. Schulz R., O’Brien A., Bookwala J., Fleissner K. Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. The Gerontologist. 1995;35(6):771-791. [DOI] [PubMed] [Google Scholar]
  5. Vitaliano P. , Zhang J., Scanlan J. Is caregiving hazardous to one’s physical health? A meta-analysis. Psychol Bull. 2003. ;129:946-972. [DOI] [PubMed] [Google Scholar]
  6. Pearlin L., Mullan J., Semple S., Skaff M. Caregiving and the stress process: an overview of concepts and their measures . The Gerontologist. 1990;30(5):583-594. [DOI] [PubMed] [Google Scholar]
  7. Meuser T., Marwit S. A comprehensive, stage-sensitive model of grief in dementia caregiving. The Gerontologist. 2001;41(5):658-670. [DOI] [PubMed] [Google Scholar]
  8. Ott C., Sanders S., Kelber S. Grief and personal growth experience of spouses and adult-child caregivers of individuals with Alzheimer’s Disease and related dementias. The Gerontologist. 2007;47(6):798-809. [DOI] [PubMed] [Google Scholar]
  9. Sanders S., Corley CS Are they grieving? A qualitative analysis examining grief in caregivers of individuals with Alzheimer’s Disease. Soc Work Health Care. 2003;37(3):35-53. [DOI] [PubMed] [Google Scholar]
  10. Hebert R., Schulz R. Caregiving at the end of life. Palliative Care Reviews. 2006;9(5):1174-1187. [DOI] [PubMed] [Google Scholar]
  11. Bonanno GA, Kaltman S. Toward an integrative perspective on bereavement. Psychol Bull. 125(6):760-776. [DOI] [PubMed] [Google Scholar]
  12. Meuser T., Marwit S., Sanders S. Assessing grief in family caregivers. In: Doka KJ, ed. Living With Grief: Alzheimer’s Disease. Washington, DC: Hospice Foundation of America; 2004:169-198. [Google Scholar]
  13. Boss P. Ambiguous Loss. Cambridge, MA: Harvard University Press. 1999. [Google Scholar]
  14. Blieszner R. , Roberto KA, Wilcox KL, Barham EJ, Winston BL Dimensions of ambiguous loss in couples coping with mild cognitive impairment. Fam Relat. 2007;56(2):196-209. [Google Scholar]
  15. Farran CJ, Keane-Hagerty E., Salloway S., Kupferer S., Wilken CS Finding meaning: an alternative paradigm for Alzheimer’s disease family caregivers. The Gerontologist. 1991;31(4):483-489. [DOI] [PubMed] [Google Scholar]
  16. Mace NL, Rabins PV The 36-hour day: a family guide to caring for persons with Alzheimer disease, related dementing illnesses, and memory loss in later life. New York, NY: Time Warner; 1981. [Google Scholar]
  17. Sanders S., Marwit S., Meuser T., Harrington P. Caregiver grief in end-stage dementia: using the Marwit and Meuser Caregiver Grief Inventory in social work practice. Soc Work Health Care . 2007;46(1):47-65. [DOI] [PubMed] [Google Scholar]
  18. Dempsey M., Baago S. Latent grief: the unique and hidden grief of carers of loved ones with dementia . Am J Alzheimer Dis. 1998;13(2):84-91. [Google Scholar]
  19. LoboPrabhu S., Molinari V., Arlinghaus K., Barr E., Lomax J. Spouses of patients with dementia: how do they stay together "till death do us part"? J Gerontol Soc Work. 2005;44(3/4):161-174. [Google Scholar]
  20. Rankin ED, Haut MW, Keefover RW Current marital functioning as a mediating factor in depression among spouse caregivers in dementia. Clin Gerontol. 2001. ; 23(3/4):27-44. [Google Scholar]
  21. Loos C., Bowd A. Caregivers of persons with Alzheimer’s disease: some neglected implications of the experience of personal loss and grief. Death Stud. 1997;21:501-514. [DOI] [PubMed] [Google Scholar]
  22. Tomita T., Kitamura T. Clinical and research measures of grief: a reconsideration. Compr Psychiatry. 2002;43(2): 95-102. [DOI] [PubMed] [Google Scholar]
  23. Marwit S., Meuser T. Development and initial validation of an inventory to assess grief in caregivers of persons with Alzheimer’s Disease. The Gerontologist . 2002;42(6): 751-765. [DOI] [PubMed] [Google Scholar]
  24. Marwit S., Meuser T. Development of a short form inventory to assess grief in caregivers of dementia patients. Death Stud. 2005;29:191-205. [DOI] [PubMed] [Google Scholar]
  25. Adams KB, Sanders S. Alzheimer’s caregiver differences in experience of loss, grief reactions and depressive symptoms across stage of disease: a mixed-method analysis. Dementia. 2004;3(2):195-210. [Google Scholar]
  26. Sanders S., Adams KB Grief reactions and depression in caregivers of individuals with Alzheimer’s disease: results from a pilot study in an urban setting. Health Soc Work. 2005;30(4):287-295. [DOI] [PubMed] [Google Scholar]
  27. Ott C., Reynolds S., Schlidt AM, Noonan P. A Guide to Supporting Family Caregivers Through the Alzheimer’s Disease Trajectory: Grief and Personal Growth. Milwaukee, WI: University of Wisconsin-Milwaukee; 2006. [Google Scholar]
  28. Sanders S., Sharp A. The utilization of a psychoeducational group approach for addressing issues of grief and loss in caregivers of individuals with Alzheimer’s disease: a pilot program. J Soc Work Long Term Care. 2004;3(2): 71-89. [Google Scholar]
  29. Adams KB The transition to caregiving: the experience of family members embarking on the dementia caregiving career. J Gerontol Soc Work. 2006;47(3/4):3-29. [DOI] [PubMed] [Google Scholar]
  30. Amirkhanya A., Wolf D. Caregiver stress and noncaregiver stress: exploring the pathways of psychiatric morbidity. The Gerontologist . 2003;43(6):817-827. [DOI] [PubMed] [Google Scholar]
  31. Caron CD, Bowers BJ Deciding whether to continue, share, or relinquish caregiving: caregiver views . Qual Health Res. 2003;13(9):1252-1271. [DOI] [PubMed] [Google Scholar]

Articles from American Journal of Alzheimer's Disease and Other Dementias are provided here courtesy of SAGE Publications

RESOURCES