Preparedness for Death: How Caregivers of Elders with Dementia Define and Perceive its Value

Gerontologist

Volumn 57, Issue 6, 2017, Pages 1093-1102

  Hovland Scafe, Cynthia A ^a   Kramer, Betty J ^b  

^a CLEVELAND STATE UNIVERSITY   (United States)

^b UNIVERSITY OF WISCONSIN MADISON   (United States)

Author keywords

Alzheimer's; Death and dying; Dementia at end of life

Indexed keywords

AGED; ATTITUDE TO DEATH; BEREAVEMENT; CAREGIVER; DEMENTIA; FEMALE; HUMAN; MALE; MIDDLE AGED; NEEDS ASSESSMENT; PERCEPTION; PSYCHOLOGY; TERMINAL CARE; VERY ELDERLY;

AGED; AGED, 80 AND OVER; ATTITUDE TO DEATH; BEREAVEMENT; CAREGIVERS; DEMENTIA; FEMALE; HUMANS; MALE; MIDDLE AGED; NEEDS ASSESSMENT; SOCIAL PERCEPTION; TERMINAL CARE;

EID: 85034839318     PISSN: 00169013     EISSN: 17585341     Source Type: Journal    
DOI: 10.1093/geront/gnw092     Document Type: Article

References (40)

1. Alzheimer's Association. (2007). Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes. Phase 3 End-of-Life Care. Retrieved December 1, 2015, from http://www.alz.org/national/documents/brochure- dcprphase3.pdf
2. Alzheimer's Association. (2015). Alzheimer's Association Report: 2012 Alzheimer's disease facts and figures. Retrieved July 30, 2015, from http://www.alz.org/downloads/facts-figures-2012.pdf
3. Barry, L., Kasl, S., & Prigerson, H. (2002). Psychiatric disorders among bereaved persons: The role of perceived circumstances of death and preparedness for death. American Journal of Psychiatry, 10, 447-457. doi.org/10.1097/00019442-200207000-00011
4. Barry, L., & Prigerson, H. (2002). Perspectives on preparedness for a death among bereaved persons. Connecticut Medicine, 66, 691-696. Retrieved from http://csms.org/publications/connecticut-medicine/
5. Bern-Klug, M. (2004). The ambiguous dying syndrome: Implications for social work. Health and Social Work, 29, 55-65. doi:10.1093/hsw/29.1.55
6. Cagle, J. G., & Kovacs, P. J. (2011). Informal caregivers of cancer patients: Perceptions about preparedness and support during hospice care. Journal of Gerontological Social Work, 54, 92-115. doi:10.1080/01634372.2010.534547
7. Di Giulio, P., Toscani, F., Villani, D., Brunelli, C., Gentile, S., & Spadin, P. (2008). Dying with advanced dementia in long-term care geriatric institutions: A retrospective study. Journal of Palliative Medicine, 11, 1023-1028. doi:10.1089/jpm.2008.002
8. Evers, M. M., Purohit, D., Perl, D., Khan, K., & Marin, D. (2002). Palliative and aggressive end-of-life care for patients with dementia. Psychiatric Services, 53, 609-613. doi:10.1176/appi. ps.53.5.609
9. Fabiszewski, K., Volicer, B., & Volicer, L. (1990). Effect of antibiotic treatment on outcome of fevers in institutionalized Alzheimer's patients. Journal of the American Medical Association, 263, 3168-3172. doi:10.1001/jama.263.23.3168
10. Ganguli, M., & Rodriguez, E. (1999). Reporting of dementia on death certificates: A community study. Journal of the American Geriatric Society, 47, 842-850. doi:10.111/j.1532-5415.1999. tb03842.x
11. Goldberger, J., Mohl, A., & Thompson, R. (2009). Psychological preparation and coping. The handbook of child life: A guide for pediatric psychosocial care (pp. 160-198). Springfield, IL: Charles C. Thomas.
12. Hebert, R. S., Dang, Q., & Schulz, R. (2006). Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia. Findings from the REACH (Resources for Enhancing Alzheimer's Caregiver Health) study. Journal of Palliative Medicine, 9, 683-693. doi:10.1089/jpm.2006.9.683
13. Hebert, R. S., Prigerson, H. G., Schulz, R., & Arnold, R. M. (2006). Preparing caregivers for the death of a loved one: A theoretical framework and suggestions for future research. Journal of Palliative Medicine, 9, 1164-1171. doi:10.1089/jpm.2006.9.1164
14. Hebert, R. S., Prigerson, H., Schulz, R., & Arnold, R. M. (2009). Preparing family caregivers for death and bereavement: Insights from caregivers of terminally ill patients. Journal of Pain and Symptom Management, 37, 3-12. doi:10.1016/j.jpainsymman.2007.12.010
15. Hebert, R. S., Schulz, R., Copeland, V., & Arnold, R. M. (2008). What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one An ethnographic study of caregivers of patients at end of life. Journal of Palliative Medicine, 11, 476-483. doi:10.1089/jpm.2007.0165
16. Heron, M. P., Hoyert, D. L., Xu, J., Scott, C., & Tejada-Vera, B. (2008). Deaths: Preliminary data for 2006 (National Vital Statistic Reports, 56 (16)). Hyattsville, MD: National Center for Health Statistics. Retrieved from http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56-16.pdf
17. Holley, C. K., & Mast, B. T. (2009). The impact of anticipatory grief on caregiver burden in dementia caregivers. The Gerontologist, 49, 388-396. doi:10.1093/geront/gnp061
18. Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277-1288. doi:10.1177/1049732305276687
19. Hudson, P. (2003). A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care. Palliative and Supportive Care, 4, 353-365. doi:10.1017/S1478951503030426
20. Kehl, K. A., Kirchhoff, K. T., Kramer, B. J., & Hovland-Scafe, C. (2009). Challenges facing families at the end of life in three settings. Journal of Social Work in End-of-Life & Palliative Care, 5, 144-168. doi:10.1080/15524250903555080
21. Lindauer, A., Harvath, T., Berry, P., & Wros, P. (2015). The meanings African American caregivers ascribe to dementia-related changes: The paradox of hanging on to loss. The Gerontologist. Advance online publication. doi:10.1093/geront/gnv023
22. Luchins, D. J., Hanrahan, P., & Murphy, K. (1997). Criteria for enrolling dementia patients in hospice. Journal of the American Geriatrics Society, 45, 1054-1059. doi:10.1111/j.1532-5415.1997. tb05966.x
23. McCarty, C. E., & Volicer, L. (2009). Hospice access for individuals with dementia. American Journal of Alzheimer's Disease & Other Dementias. doi:10.1177/1533317509348207
24. McLeod-Sordjan, R. (2014). Death preparedness: a concept analysis. Journal of Advanced Nursing, 70, 1008-1019. Retrieved from https://www.researchgate.net/journal/0309-2402-Journal-of-Advanced-Nursing
25. Miles, M., & Huberman, A. (1994). Qualitative data analysis: an expanded sourcebook. Thousand Oaks, CA: Sage
26. Mitchell, S. L. (2015). Advanced dementia. The New England Journal of Medicine, 372, 2533-2540. doi:10.1056/NEJMcp1412652
27. Mitchell, S. L., Kiely, D. K., & Hamel, M. B. (2004). Dying with advanced dementia in the nursing home. Archives of Internal Medicine, 164, 321-326. doi:10.1001/archinte.164.3.321
28. Mitchell, S. L., Morris, J. N., Park, P. S., & Fries, B. E. (2004). Terminal care for persons with advanced dementia in the nursing home and home care settings. Journal of Palliative Medicine, 7, 808-816. doi:10.1089/jpm.2004.7.808
29. Ott, C., Sanders, S., & Kelber, S. (2007). Grief and personal growth experience of spouses and adult-child caregivers of individuals with Alzheimer's disease and related dementias. The Gerontologist, 47, 798-809. doi.org/10.1093/geront/47.6.798
30. Padgett, D. K. (1998). Qualitative methods in social work research: Challenges and rewards. Thousand Oaks, CA: Sage.
31. Peacock, S., Duggleby, W., & Koop, P. (2014). The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia. Palliative & Supportive Care, 12, 117-126. doi:10.1017/S1478951512001034
32. Sandelowski, M. (2000). Whatever happened to qualitative description Research in Nursing & Health, 23, 334-340. doi:10.1002/1098240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G
33. Schulz, R., Mendelsohn, A., Haley, W., Mahoney, D., Allen, R., Zhang, S., Belle, S. (2003). End-of-life care and the effects of bereavement in family caregivers of persons with dementia. New England Journal of Medicine, 349, 1936-1942. doi:0.1056/NEJMsa035373
34. Shanley, C., Russell, C., Middleton, H., & Simpson-Young, V. (2011). Living through end-stage dementia: The experiences and expressed needs of family carers. Dementia, 10, 325-340. doi:10.1177/1471301211407794
35. Shega, J., & Tozer, C. (2009). Improving care of people with dementia at the end of life: The role of hospice and the U.S. experience. Dementia, 8, 377-389. doi:10.1177/1471301209104979
36. Shega, J. W., Hougham, G. W., Stocking, C. B., Cox-Hayley, D., & Sachs, G. A. (2008). Patients dying with dementia: Experience
37. at the end of life and impact of hospice care. Journal of Pain and Symptom Management, 35, 499-507. doi:10.1016/j. jpainsymman.2007.06.011
38. Sloane, P., Zimmerman, S., Williams, C., & Hanson, L. (2008). Dying with dementia in long-term care. The Gerontologist, 48, 741-751. doi:10.1093/geront/48.6.741
39. Steinhauser, K., Christakis, N. A., Clipp, E. C., McNeilly, M., Grambow, S., Parker, J., & Tulsky, J. A. (2001). Preparing for the end of life: Preferences of patients, families, physicians and other care providers. Journal of Pain and Symptom Management, 22, 727-737. doi:10.1016/S0885-3924(01)00334-7
40. van der Steen, J. T., Onwuteaka-Philipsen, B. D., Knol, D. L., Ribbe, M. W., & Deliens, L. (2013). Caregivers' understanding of dementia predicts patients' comfort at death: A prospective observational study. BMC Medicine, 11, 105. doi:10.1186/1741-7015-11-105