Pre-death grief in the context of dementia caregiving: A concept analysis

Journal of Advanced Nursing

Volumn 70, Issue 10, 2014, Pages 2196-2207

  Lindauer, Allison ^a   Harvath, Theresa A ^a  

^a OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

Author keywords

Caregiving; Concept analysis; Dementia; Family care; Grief; Loss; Nursing; Pre death grief; Sorrow

Indexed keywords

CAREGIVER; DEATH; DEMENTIA; FAMILY; GRIEF; HUMAN; NURSING; PSYCHOLOGY;

CAREGIVERS; DEATH; DEMENTIA; FAMILY; GRIEF; HUMANS;

EID: 84925443250     PISSN: 03092402     EISSN: 13652648     Source Type: Journal    
DOI: 10.1111/jan.12411     Document Type: Article

References (89)

1. Abrahamson K., Jill Suitor J. & Pillemer K. (2009) Conflict between nursing home staff and residents' families: does it increase burnout? Journal of Aging and Health 21(6), 895-912.
2. Adams K.B. (2006) Transition to caregiving: the experience of family members embarking on the dementia caregiving career. Journal of Gerontological Social Work 47(3-4), 3-29.
3. Adams K.B. & Sanders S. (2004) Alzheimer's caregiver differences in experience of loss, grief reactions and depressive symptoms across stage of disease: a mixed-method analysis. Dementia: The International Journal of Social Research and Practice 3(2), 195-210.
4. Adams K.B., McClendon M.J. & Smyth K.A. (2008) Personal losses and relationship quality in dementia caregiving. Dementia: The International Journal of Social Research and Practice 7(3), 301-319.
5. Albinsson L. & Strang P. (2003) Existential concerns of families of late-stage dementia patients: questions of freedom, choices, isolation, death and meaning. Journal of Palliative Medicine 6(2), 225-235.
6. Almberg B.E., Grafstrom M. & Winblad B. (2000) Caregivers of relatives with dementia: experiences encompassing social support and bereavement. Aging & Mental Health 4(1), 82-89.
7. Alzheimer's Association (2013) 2013 Alzheimer's disease facts and figures. Alzheimer's & Dementia 9(2), 208.
8. Bayles K.A. (2003) Effects of working memory deficits on the communicative functioning of Alzheimer's dementia patients. Journal of Communication Disorders 36(3), 209-219.
9. Bayles K.A. & Tomoeda C.K. (1991) Caregiver report of prevalence and appearance order of linguistic symptoms in Alzheimer's patients. The Gerontologist 31(2), 210-216.
10. Benner P. (1985) Quality of life: a phenomenological perspective on explanation, predication and understanding nursing science. Advances in Nursing Science 8(1), 1-14.
11. Boyle M.H. (1998) Guidelines for evaluating prevalence studies. Evidence Based Mental Health 1(2), 37-39.
12. Butcher H.K., Holkup P.A. & Buckwalter K.C. (2001) The experience of caring for a family member with Alzheimer's disease. Western Journal of Nursing Research 23(1), 33-55.
13. Carter J.H., Lyons K.S., Lindauer A. & Malcom J. (2012) Pre-death grief in Parkinson's caregivers: a pilot survey-based study. Parkinsonism and Related Disorders 18(Suppl 3), S15-S18.
14. Chan D., Livingston G., Jones L. & Sampson E.L. (2013) Grief reactions in dementia carers: a systematic review. International Journal of Geriatric Psychiatry 28(1), 1-17.
15. Chen C.K., Sabir M., Zimmerman S., Suitor J. & Pillemer K. (2007) The importance of family relationships with nursing facility staff for family caregiver burden and depression. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences 62(5), P253-P260.
16. Chinn P.L. & Kramer M.K. (2011a) Empiric knowledge development: conceptualizing and structuring. In Integrated Theory and Knowledge Development in Nursing, 8th edn (Chinn P.L. & Kramer M.K., eds), Elsevier, St. Louise, MO, pp. 152-183.
17. Chinn P.L. & Kramer M.K. (2011b) The history of knowledge development in nursing. In Integrated Theory and Knowledge Development in Nursing, 8th edn (Chinn P.L. & Kramer M.K., eds), Elsevier, St. Louis, MO, pp. 24-62.
18. Collins C., Liken M., King S. & Kokinakis C. (1993) Loss and grief among family caregivers of relatives with dementia. Qualitative Health Research 3(2), 236-253.
19. Cowles K.V. & Rodgers B.L. (1991) The concept of grief: a foundation for nursing research and practice. Research in Nursing & Health 14(2), 119-127.
20. Davis P. (2004) The Long Goodbye. Penguin Group, New York, NY.
21. DeVellis R.F. (2012) Validity. In Scale Development: Theory and Applications, 3rd edn (DeVellis R.F., ed.), Sage, Thousand Oaks, CA, pp. 59-72.
22. Diwan S., Hougham G.W. & Sachs G.A. (2009) Chronological patterns and issues precipitating grieving over the course of caregiving among family caregivers of persons with dementia. Clinical Gerontologist 32(4), 358-370.
23. Duggleby W., Williams A., Wright K. & Bollinger S. (2009) Renewing everyday hope: the hope experience of family caregivers of persons with dementia. Issues in Mental Health Nursing 30(8), 514-521.
24. Dupuis S.L. (2002) Understanding ambiguous loss in the context of dementia care: adult children's perspectives. Journal of Gerontological Social Work 37(2), 93-115.
25. Eakes G.G., Burke M.L. & Hainsworth M.A. (1998) Middle-range theory of chronic sorrow. Image: The Journal of Nursing Scholarship 30(2), 179-184.
26. Eyre R. (2001) Iris. British Broadcasting Company (BBC), Miramax Films, United Kingdom, United States.
27. Ferri C.P., Prince M., Brayne C., Brodaty H., Fratiglioni L., Ganguli M., Hall K., Hasegawa K., Hendrie H., Huang Y., Jorm A., Mathers C., Menezes P.R., Rimmer E., Scazufca M. & Alzheimer's Disease International (2005) Global prevalence of dementia: a Delphi consensus study. Lancet 366(9503), 2112-2117.
28. Ford J.L., Linde B.D., Gigliotti C. & Kim K.Y. (2013) Grief experiences of 3 caregiving wives of veterans with dementia. American Journal of Hospice and Palliative Medicine 30(2), 137-145.
29. Fowler N.R., Hansen A.S., Barnato A.E. & Garand L. (2013) Association between anticipatory grief and problem solving among family caregivers of persons with cognitive impairment. Journal of Aging & Health 25(3), 493-509.
30. Frank J. (2008) Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis. American Journal of Alzheimer's Disease and Other Dementias 22(6), 516-527.
31. Fulton R. (2003) Anticipatory mourning: a critique of the concept. Mortality 8(4), 342-351.
32. Furlini L. (2001) The parent they knew and the 'new' parent: daughters' perceptions of dementia of the Alzheimer's type. Home Health Care Services Quarterly 20(1), 21-38.
33. Garand L., Lingler J.H., Deardorf K.E., DeKosky S.T., Schulz R., Reynolds C.F. III & Dew M.A. (2012) Anticipatory grief in new family caregivers of persons with mild cognitive impairment and dementia. Alzheimer Disease & Associated Disorders 26(2), 159-165.
34. Gillies B. (2012) Continuity and loss: the carer's journey through dementia. Dementia 11(5), 657-676.
35. Givens J.L., Prigerson H.G., Kiely D.K., Shaffer M.L. & Mitchell S.L. (2011) Grief among family members of nursing home residents with advanced dementia. The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry 19(6), 543-550.
36. Holley C.K. & Mast B.T. (2009) The impact of anticipatory grief on caregiver burden in dementia caregivers. The Gerontologist 49(3), 388-396.
37. Holley C.K. & Mast B.T. (2010) Predictors of anticipatory grief in dementia caregivers. Clinical Gerontologist 33(3), 223-236.
38. Hupcey J.E. & Penrod J. (2005) Concept analysis: examining the state of the science. Research & Theory for Nursing Practice 19(2), 197-208.
39. Im E. & Meleis A.I. (1999) Situation-specific theories: philosophical roots, properties and approach. Advances in Nursing Science 22(2), 11-24.
40. Johansson A.K., Sundh V., Wijk H. & Grimby A. (2012) Anticipatory grief among close relatives of persons with dementia in comparison with close relatives of patients with cancer. The American Journal of Hospice & Palliative Care 30(1), 29-34.
41. Jones P.S. & Martinson I.M. (1992) The experience of bereavement in caregivers of family members with Alzheimer's disease. Journal of Nursing Scholarship 24(3), 172-176.
42. Kiely D.K., Prigerson H. & Mitchell S.L. (2008) Health care proxy grief symptoms before the death of nursing home residents with advanced dementia. American Journal of Geriatric Psychiatry 16(8), 664-673.
43. Kim Y. & Schulz R. (2008) Family caregivers' strains: comparative analysis of cancer caregiving with dementia, diabetes and frail elderly caregiving. Journal of Aging and Health 20(5), 483-503.
44. Kjallman-Alm A., Norbergh K.G. & Hellzen O. (2013) What it means to be an adult child of a person with dementia. International Journal of Qualitative Studies on Health and Well-being 8, 21676.
45. Knutsen H. & Raholm M. (2009) The dialectic movement between suffering and reconciliation: Male caregivers' experience of caring for their wives suffering from dementia. International Journal for Human Caring 13(4), 50-56.
46. Large S. & Slinger R. (2013) Grief in caregivers of persons with Alzheimer's disease and related dementia: A qualitative synthesis, Dementia (London, England), doi: 10.1177/1471301213494511.
47. Lindgren C.L., Connelly C.T. & Gaspar H.L. (1999) Grief in spouse and children caregivers of dementia patients. Western Journal of Nursing Research 21(4), 521-537.
48. Madsen R. & Birkelund R. (2013) 'The path through the unknown': the experience of being a relative of a dementia-suffering spouse or parent. Journal of Clinical Nursing 22, 3024-3031.
49. Marwit S.J. & Kaye P.N. (2006) Measuring grief in caregivers of persons with acquired brain injury. Brain Injury 20(13-14), 1419-1429.
50. Marwit S.J. & Meuser T.M. (2002) Development and initial validation of an inventory to assess grief in caregivers of persons with Alzheimer's disease. The Gerontologist 42(6), 751-765.
51. Marwit S.J. & Meuser T.M. (2005) Development of a short form inventory to assess grief in caregivers of dementia patients. Death Studies 29, 191-205.
52. Marwit S.J., Chibnall J.T., Dougherty R., Jenkins C. & Shawgo J. (2008) Assessing pre-death grief in cancer caregivers using the Marwit-Meuser Caregiver Grief Inventory (MM-CGI). Psycho-oncology 17(3), 300-303.
53. Mayer M. (2001) Chronic sorrow in caregiving spouses of patients with Alzheimer's disease. Journal of Aging & Identity 6(1), 49-60.
54. Meuser T.M. & Marwit S.J. (2001) A comprehensive, stage-sensitive model of grief in dementia caregiving. The Gerontologist 41(5), 658-670.
55. Morse J.M., Mitcham C., Hupcey J.E. & Tason M.C. (1996) Criteria for concept evaluation. Journal of Advanced Nursing 24(2), 385-390.
56. Moyle W., Edwards H. & Clinton M. (2002) Living with loss: dementia and the family caregiver. Australian Journal of Advanced Nursing 19(3), 25-31.
57. National Institute for Health and Care Excellence (2009) The guidelines manual (Appendices). (Online) Retrieved from http://www.nice.org.uk/aboutnice/howwework/developingniceclinicalguidelines/clinicalguidelinedevelopmentmethods/theguidelinesmanual2007/the_guidelines_manual__all_appendices.jsp on 26 December 2013.
58. Navab E., Negarandeh R. & Peyrovi H. (2012) Lived experiences of Iranian family member caregivers of persons with Alzheimer's disease: caring as 'captured in the whirlpool of time'. Journal of Clinical Nursing 21(7-8), 1078-1086.
59. Nichols L.O., Martindale-Adams J., Greene W.A., Burns R., Graney M.J. & Lummus A. (2009) Dementia caregivers' most pressing concerns. Clinical Gerontologist 32(1), 1-14.
60. O'Donnell M. (2000) The long gray tunnel: the day-to-day experience of spouse caregivers of people with Alzheimer's disease.. including commentary by Corbin JM. Scholarly Inquiry for Nursing Practice 14(1), 47.
61. Olshansky S. (1962) Chronic sorrow: a response to having a mentally defective child. Social Casework 43, 190-193.
62. Ott C.H., Sanders S. & Kelber S.T. (2007) Grief and personal growth experience of spouses and adult-child caregivers of individuals with Alzheimer's disease and related dementias. The Gerontologist 47(6), 798-809.
63. Ott C.H., Kelber S.T. & Blaylock M. (2010) 'Easing the way' for spouse caregivers of individuals with dementia: a pilot feasibility study of a grief intervention. Research in Gerontological Nursing 3(2), 89-99.
64. Paun O. (2003) Older women caring for spouses with Alzheimer's disease at home: making sense of the situation. Health Care for Women International 24(4), 292-312.
65. Paun O. & Farran C.J. (2011) Chronic grief management for dementia caregivers in transition: intervention development and implementation. Journal of Gerontological Nursing 37(12), 28-35.
66. Penrod J. (2001) Refinement of the concept of uncertainty. Journal of Advanced Nursing 34(2), 238-245.
67. Penrod J. & Hupcey J.E. (2005) Enhancing methodological clarity: principle-based concept analysis. Journal of Advanced Nursing 50(4), 403-409.
68. Perry J. (2002) Wives giving care to husbands with Alzheimer's disease: a process of interpretive caring. Research in Nursing and Health 25(4), 307-316.
69. Pillemer K., Suitor J.J., Henderson C.R., Meador R., Schultz L., Robison J. & Hegeman C. (2003) A cooperative communication intervention for nursing home staff and family members of residents. The Gerontologist 43(Suppl 2), 96-106.
70. Pinquart M. & Sorensen S. (2004) Associations of caregiver stressors and uplifts with subjective well-being and depressive mood: a meta-analytic comparison. Aging & Mental Health 8(5), 438-449.
71. Rando T.A. (1983) An investigation of grief and adaptation in parents whose children have died from cancer. Journal of Pediatric Psychology 8(1), 3-20.
72. Rando T.A. (1988) Anticipatory grief: the term is a misnomer but the phenomenon exists. Journal of Palliative Care 4(1-2), 70-73.
73. Rando T.A. (2000) Clinical Dimensions of Anticipatory Mourning. Research Press, Champaign, IL.
74. Risjord M. (2009) Rethinking concept analysis. Journal of Advanced Nursing 65(3), 684-691.
75. Ross A. & Dagley J.C. (2009) An assessment of anticipatory grief as experienced by family caregivers of individuals with dementia. Alzheimer's Care Today 10(1), 8-21.
76. Sachs G.A., Shega J.W. & Cox-Hayley D. (2004) Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine 19(10), 1057-1063.
77. Sanders S. & Adams K.B. (2005) Grief reactions and depression in caregivers of individuals with Alzheimer's disease: results from a pilot study in an urban setting. Health & Social Work 30(4), 287-295.
78. Sanders S. & Sharp A. (2004) 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. Journal of Social Work in Long Term Care 3(2), 71-88.
79. Sanders S., Morano C. & Corley C.S. (2003) The expressions of loss and grief among male caregivers of individuals with Alzheimer's disease. Journal of Gerontological Social Work 39(4), 3-18.
80. Sanders S., Ott C.H., Kelber S.T. & Noonan P. (2008) The experience of high levels of grief in caregivers of persons with Alzheimer's disease and related dementia. Death Studies 32(6), 495-523.
81. Shim B., Barroso J.& Davis L.L. (2012) A comparative qualitative analysis of stories of spousal caregivers of people with dementia: negative, ambivalent and positive experiences. International Journal of Nursing Studies 49(2), 220-229.
82. Shuter P., Beattie E. & Edwards H. (2013) An exploratory study of grief and health-related quality of life for caregivers of people with dementia. American Journal of Alzheimer's Disease and Other Dementias, doi: 10.1177/1533317513517034.
83. Silverberg E. (2006) Introducing the 3-A grief intervention model for dementia caregivers: acknowledge, assess and assist. Omega: Journal of Death & Dying 54(3), 215-235.
84. Strong J.V. & Mast B.T. (2013) The impact of depression on the expression of caregiver burden and grief. Clinical Gerontologist: The Journal of Aging and Mental Health 36(5), 440-450.
85. Teel C.S. (1991) Chronic sorrow: analysis of the concept. Journal of Advanced Nursing 16(11), 1311-1319.
86. Theut S.K., Jordan L., Ross L.A. & Deutsch S.I. (1991) Caregiver's anticipatory grief in dementia: a pilot study. The International Journal of Aging & Human Development 33(2), 113-118.
87. Walker R.J. & Pomeroy E.C. (1997) The impact of anticipatory grief on caregivers of persons with Alzheimer's disease. Home Health Care Services Quarterly 16(1-2), 55-76.
88. Wimo A., Winblad B. & Jonsson L. (2007) An estimate of the total worldwide societal costs of dementia in 2005. Alzheimer's & Dementia: The Journal of the Alzheimer's Association 3(2), 81-91.
89. Ziemba R.A. & Lynch-Sauer J.M. (2005) Preparedness for taking care of elderly parents: 'first, you get ready to cry'. Journal of Women & Aging 17(1-2), 99-113.