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Approaching the end of life and dying with dementia in care homes: the accounts of family carers

Part of: Bespoke shallow archive Weizmann

Published online by Cambridge University Press:  22 April 2010

J Hennings ,
K Froggatt  and
J Keady
J Hennings*
Affiliation:
School of Health and Medicine, Lancaster University, UK
K Froggatt
Affiliation:
School of Health and Medicine, Lancaster University, UK
J Keady
Affiliation:
School of Nursing (midwifery and social work), University of Manchester, UK and Greater Manchester West Mental Health NHS Foundation Trust
*
Address for correspondence: Jean Hennings, International Observatory on End of Life Care, School of Health and Medicine, Lancaster University, Lancaster LA1 4QT. Email: j.hennings@lancaster.ac.uk
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Summary

Research into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.

Keywords

care homesnursing homesdementiafamily carerend of lifedying
Type
Neuropsychiatry of old age
Information
Reviews in Clinical Gerontology , Volume 20 , Issue 2 , May 2010 , pp. 114 - 127
Copyright
Copyright © Cambridge University Press 2010

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References

1Ferri, C, Prince, M, Brayne, C, Brodaty, H, Fratiglioni, L, Gnaguli, M et al. Global prevalence of dementia: a Delphi consensus study. Lancet 2005; 366: 2112–17.Google Scholar
2Mitchell, S, Teno, J, Kiely, D, Shaffer, M, Jones, R, Prigerson, H et al. The clinical course of advanced dementia. New Engl J Med 2009; 361: 1529–38.Google Scholar
3Lunney, J, Lynn, J, Hoga, C. Profiles of older medicare decedents. J Am Geriatr Soc 2002; 50: 1108–12.CrossRefGoogle ScholarPubMed
4Small, N, Froggatt, K, Downs, M. Living and dying with dementia: Dialogues about palliative care. Oxford: Oxford University Press; 2007.CrossRefGoogle Scholar
5NICE and SCIE. Dementia: supporting people with dementia and their carers in health and social care, NICE clinical guideline 42: National Institute for Health and Clinical Excellence, 2006.Google Scholar
6Help the Aged. My home life. Quality of life in care homes. A review of the literature. London: Help the Aged; 2007 (6-12-08); available at: www.myhomelife.org.uk.Google Scholar
7McCarthy, M, Addington-Hall, J, Altmann, D. The experience of dying with dementia: a retrospective study. Int J Geriatr Psychiat 1997; 12: 404–9.3.0.CO;2-2>CrossRefGoogle ScholarPubMed
8Cox, S, Cook, A. Caring for people with dementia at the end of life. In Hockley, J, Clarke, D (eds), Palliative Care for Older People in Care Homes, pp. 86–103. Buckingham: Open University Press; 2002.Google Scholar
9Sampson, E, Blanchard, M, Jones, L, Tookman, A, King, M. Dementia in the acute hospital: prospective cohort study of prevalence and mortality. Br J Psychiat 2009; 195: 61–66.CrossRefGoogle ScholarPubMed
10Sampson, L, Harrison-Denning, K, Greenish, W, Mandal, U, Holman, A, Jones, L. End of life for people with dementia. London: Marie Curie Cancer Care, 2009.Google Scholar
11Mitchell, S, Teno, JM, Miller, SC, Mor, V. A national study of the location of death for older persons with dementia. J Am Geriatr Soc 2005; 53: 299–305.CrossRefGoogle ScholarPubMed
12Macdonald, A, Cooper, B. Long-term care and dementia services: an impending crisis. Age Ageing 2007; 36: 16–22.CrossRefGoogle ScholarPubMed
13Kay, D, Forster, D, Newens, A. Long term survival, place of death and death certification in clinically diagnosed pre-senile dementia in northern England. Br J Psychiat 2000; 177: 156–62.CrossRefGoogle ScholarPubMed
14Kiely, DK, Prigerson, H, Mitchell, SL. Health care proxy grief symptoms before the death of nursing home residents with advanced dementia. Am J Geriatr Psychiat 2008; 16: 664–73.Google Scholar
15Gaugler, J, Kane, R, Newcomer, R. Resilience and transitions from dementia caregiving. J Gerontol [Ser B: Psych Sci Soc Sci] 2007; 62B: P38–44.CrossRefGoogle Scholar
16Gaugler, JE, Kane, RL, Kane, RA, Newcomer, R. Unmet care needs and key outcomes in dementia. J Am Geriatr Soc 2005; 53: 2098–105.CrossRefGoogle ScholarPubMed
17Rudd, MG, Viney, LL, Preston, CA. The grief experienced by spousal caregivers of dementia patients: The role of place of care of patient and gender of caregiver. Int J Aging Human Dev 1999; 48: 217–40.CrossRefGoogle Scholar
18Mausbach, B, Aschbacher, K, Patterson, T, von Kanel, R, Dimsdale, J, Mills, P et al. Effects of placement and bereavement on psychological well-being and cardiovascular risk in Alzheimer's caregivers: a longitudinal analysis. J Psychosom Res 2007; 62: 439–45.Google Scholar
19Diwan, S, Hougham, GW, Sachs, GA. Strain experienced by caregivers of dementia patients receiving palliative care: Findings from the Palliative Excellence in Alzheimer Care Efforts (PEACE) program. J Palliative Med 2004; 7: 797–807.Google Scholar
20Russell, C, Middleton, H, Shanley, C. Dying with dementia: the views of family caregivers about quality of life. Australasian J Ageing 2008; 27: 89–92.Google Scholar
21Sanders, S, Corley, CS. Are they grieving? A qualitative analysis examining grief in caregivers of individuals with Alzheimer's disease. Social Work Health Care 2003; 37: 35–53.Google Scholar
22Dupuis, SL. Understanding ambiguous loss in the context of dementia care: Adult children's perspectives. J Gerontol Social Work 2002; 37: 93–115.CrossRefGoogle Scholar
23Mittleman, M, Haley, W, Clay, O, Roth, D. Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology 2006; 67: 1592–99.CrossRefGoogle Scholar
24Caron, CD, Ducharme, F, Griffith, J. Deciding on institutionalization for a relative with dementia: The most difficult decision for caregivers. Can J Aging 2006; 25: 193–205.CrossRefGoogle Scholar
25Strang, V, Koop, P, Dupuis-Blanchard, S, Nordstrom, M, Thompson, B. Family caregivers and transition to long-term care. Clin Nursing Res 2006; 15: 27–45.CrossRefGoogle ScholarPubMed
26Kellett, U. Transition in care: family carers’ experience of nursing home placement. J Adv Nursing 1999; 29: 1474–81.CrossRefGoogle ScholarPubMed
27Hertzberg, A, Ekman, S-L. We, not them and us? Views on the relationships and interactions between staff and relatives of older people permanently living in nursing homes. J Adv Nursing 2000; 31: 614–22.Google Scholar
28Buckwalter, K, Kelley, L, Maas, M, Park, M, Reed, D, Schutte, D et al. Outcomes of family involvement in care intervention for caregivers of individuals with dementia. Nursing Res 2004; 53: 76–86.Google Scholar
29Brown Wilson, C. Exploring relationships in care homes: A constructivist inquiry [unpublished PhD thesis]. Sheffield: University of Sheffield; 2007.Google Scholar
30Department of Health. Living well with dementia: A national dementia strategy. London: Department of Health, 2009.Google Scholar
31Department of Health. End of Life Care Strategy: Promoting High Quality Care for all Adults at the End of Life. London: Department of Health, 2008.Google Scholar
32Scott, S, Pace, V. The first 50 patients: A brief report on the initial findings from the Palliative Care in Dementia Project. Dementia 2009; 8: 435–41.Google Scholar
33Volicer, L. End-of-life care for people with dementia in long-term care settings. Alzheimer's Care Today 2008; 9: 84–102.Google Scholar
34Munn, J, Hanson, L, Zimmerman, S, Sloane, P, Mitchell, C. Is hospice associated with improved end-of-life care in nursing homes and assisted living facilities? J Am Geriatr Soc 2006; 54: 490–95.Google Scholar
35Froggatt, KA. Palliative care and nursing homes: where next? Palliative Med 2001; 15: 42–48.CrossRefGoogle ScholarPubMed
36Waldrop, DP, Kirkendall, AM. Comfort measures: a qualitative study of nursing home-based end-of-life care. J Palliative Med 2009; 12: 719–24.Google Scholar
37Philips, J, Davidson, P, Jackson, D, Kristjanson, L, Daly, J, Curran, J. Residential aged care: The last frontier of palliative care. J Adv Nursing 2006; 55: 416–24.Google Scholar
38Kaasalainen, S, Brazil, K, Ploeg, J, Martin, L. Nurses’ perceptions around providing palliative care for long term care residents with dementia. J Palliative Care 2007; 23: 173–80.Google Scholar
39Gnaedinger, N, Robinson, J, Murray, K, Vandergoot, A. The dementia difference: a palliative approach for people with late-stage dementia – an education package for residential care. J Palliative Care 2008; 24: 274–76.Google Scholar
40Robinson, J. The dementia difference: an education initiative for interprofessional staff caring for people dying with dementia in residential care. J Palliative Care 2008; 24: 223.Google Scholar
41Arcand, M, Monette, J, Monette, M, Sourial, N, Fournier, L, Gore, B et al. Educating nursing home staff about the progression of dementia and the comfort care option: impact on family satisfaction with end-of-life care. J Am Med Directors Assoc 2009; 10: 50–55.Google Scholar
42Shega, JW, Hougham, GW, Stocking, CB, Cox-Hayley, D, Sachs, GA. Patients dying with dementia: experience at the end of life and impact of hospice care. J Pain Symptom Manag 2008; 35: 499–507.Google Scholar
43Bosek, M, Lowry, E, Lindeman, D, Burck, J, Gwyther, L. Promoting a good death for persons with dementia in nursing facilities: family caregivers’ perspectives. JONA's Healthcare Law, Ethics Regul 2003; 5: 34–41.Google Scholar
44Engel, SE, Kiely, DK, Mitchell, SL. Satisfaction with end of life care for nursing home residents with advanced dementia. J Am Geriatr Soc 2006; 54: 1567–72.Google Scholar
45van der Steen, JT, Gijsberts, MJ, Knol, DL, Deliens, L, Muller, MT. Ratings of symptoms and comfort in dementia patients at the end of life: Comparison of nurses and families. Palliative Med 2009; 23: 317–24.Google Scholar
46Centre for Reviews and Dissemination. Systematic reviews. CRD's guidance for undertaking reviews in health care. York: CRD University of York; 2008.Google Scholar
47Noblit, G, Hare, R. Meta-ethnography: synthesizing qualitative studies. London: Sage; 1988.Google Scholar
48van der Steen, J, Gijsberts, MJ, Muller, MT, Deliens, L, Volicer, L. Evaluations of end of life with dementia by families in Dutch and US nursing homes. Int Psychogeriatr 2009; 21: 321–29.Google Scholar
49Powers, BA, Watson, NM. Meaning and practice of palliative care for nursing home residents with dementia at end of life. Am J Alzheimers Dis Other Dement 2008; 23: 319–25.Google Scholar
50Caron, CD, Griffith, J, Arcand, M. Decision making at the end of life in dementia: how family caregivers perceive their interactions with health care providers in long-term-care settings. J Appl Gerontol 2005a; 24: 231–47.CrossRefGoogle Scholar
51Caron, C, Griffith, J, Arcand, M. End-of-life decision making in dementia: the perspective of family caregivers. Dementia 2005; 4: 113–36.Google Scholar
52Lopez, RP. Doing what's best: decisions by families of acutely ill nursing home residents. Western J Nursing Res 2009; 31: 613–26.Google Scholar
53Sanders, S, Butcher, HK, Swails, P, Power, J. Portraits of caregivers of end-stage dementia patients receiving hospice care. Death Studies 2009; 33: 521–56.CrossRefGoogle ScholarPubMed
54Gessert, C, Forbes, S, Bern-Klug, M. Planning end-of-life care for patients with dementia: roles of families and health professionals. Omega: J Death Dying 2000–2001; 42: 273–91.CrossRefGoogle ScholarPubMed
55Forbes, S, Bern-Klug, M, Gessert, CE. End-of-life decision making for nursing home residents with dementia. J Nursing Scholar 2000; 32: 251–58.Google Scholar
56Clarence-Smith, B. Healthcare for people with dementia in care homes: family carer experiences. J Dementia Care 2009; 17: 36–38.Google Scholar
57Elliott, BA, Gessert, CE, Peden-McAlpine, C. Decision making by families of older adults with advanced cognitive impairment – spirituality and meaning. J Gerontol Nursing 2007; 33: 49–55.Google Scholar
58Moyle, W, Edwards, H, Clinton, M. Living with loss: dementia and the family caregiver. Austral J Adv Nursing 2002; 19: 25–31.Google Scholar
59The, A, Pasman, R, OnwuteakaPhilipsen, B, Ribbe, M, Van Der Wal, G. Withholding the artificial administration of fluids and food from elderly patients with dementia: an ethnographic study. Br Med J 2002; 325: 1326.Google Scholar
60Arcand, M, Caron, CD. Comfort care at the end of life for persons with Alzheimer's disease or other degenerative diseases of the brain. A guide for caregivers. Sherbrooke 2005; available at: www.expertise-sante.com/accueil.htm.Google Scholar
61Evans, G. Improving end of life care for the person with dementia. Dementia 2009; 8: 363–76.Google Scholar
62Knapp, M, Prince, M. Dementia UK: Report to the Alzheimer's Society. London: King's College London and London School of Economics and Political Science, 2007.Google Scholar
63Nuffield Council on Bioethics. Dementia: ethical issues. Consultation paper. 2008 [16-12-09]; available at: www.nuffieldbioethics.org.Google Scholar
64National Council for Palliative Care. Getting dementia care right: The power of partnership. Inside Palliative Care 2009; 10: 14–15.Google Scholar
65Alzheimer's Society. Out of the shadows. 2008 [16-12-09]; available at: http://alzheimers.org.uk/outoftheshadows.Google Scholar
66Bennett, A.Untold Stories. London: Faber and Faber; 2005.Google Scholar