Abstract
In industrialized countries, many people are dying with dementia and a steep rise is expected over the coming decades. In the Netherlands, for example, at present one out of nine decedents has dementia (van der Meulen and Keij-Deerenberg 2003). Dementia patients, including those with Alzheimer’s disease, should receive the best possible end-of-life care. Patients dying with dementia as a group resemble patients dying from other diseases such as cancer in that pain and shortness of breath are possibly the most common burdensome symptoms in the dying phase (McCarthy et al. 1997; van der Steen et al. 2007a).
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Preview
Unable to display preview. Download preview PDF.
References
Ahronheim JC, Morrison RS, Baskin SA, Morris J, Meier DE (1996) Treatment of the dying in the acute care hospital. Advanced dementia and metastatic cancer. Arch Intern Med 156: 2094–2100
Ahronheim JC, Morrison RS, Morris J, Baskin S, Meier DE (2000) Palliative care in advanced dementia: a randomized controlled trial and descriptive analysis. J Palliat Med 3: 265–273
Allen RS, Allen JY, Hilgeman MM, Decoster J (2008) End-of-life decision-making, decisional conflict, and enhanced information: Race Effects. J Am Geriatr Soc 56: 1904–1909
Aminoff BZ, Adunsky A (2006) Their last 6 months: suffering and survival of end-stage dementia patients. Age Ageing 35: 597–601
Arcand M, Caron C (2005) Comfort care at the end of life for persons with Alzheimer’s disease or other degenerative diseases of the brain. Centre de Sante et de Services Sociaux — Institut Uiversitair de Geriatrie de Sherbrooke, Canada, Sherbrooke (also available in French, Italian, and Dutch)
Baumgarten M, Margolis DJ, Localio AR, Kagan SH, Lowe RA, Kinosian B, Holmes JH, Abbuhl SB, Kavesh W, Ruffin A (2006) Pressure ulcers among elderly patients early in the hospital stay. J Gerontol A Biol Sci Med Sci 61: 749–754
Birch D, Draper J (2008) A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nurs 17: 1144–1163
Bjoro K, Herr K (2008) Assessment of pain in the nonverbal or cognitively impaired older adult. Clin Geriatr Med 24: 237–262
Boockvar KS, Gruber-Baldini AL, Burton L, Zimmerman S, May C, Magaziner J (2005) Outcomes of infection in nursing home residents with and without early hospital transfer. J Am Geriatr Soc 53: 590–596
Brod M, Stewart AL, Sands L, Walton P (1999) Conceptualization and measurement of quality of life in dementia: the dementia quality of life instrument (DQoL). Gerontologist 39: 25–35
Buffum MD, Sands L, Miaskowski C, Brod M, Washburn A (2004) A clinical trial of the effectiveness of regularly scheduled versus as-needed administration of acetaminophen in the management of discomfort in older adults with dementia. J Am Geriatr Soc 52: 1093–1097
Casarett D, Karlawish J, Morales K, Crowley R, Mirsch T, Asch DA (2005) Improving the use of hospice services in nursing homes: a randomized controlled trial. JAMA 294: 211–217
Daaleman TP, Usher BM, Williams SW, Rawlings J, Hanson LC (2008) An exploratory study of spiritual care at the end of life. Ann Fam Med 6: 406–411
D’Agata E, Mitchell SL (2008) Patterns of antimicrobial use among nursing home residents with advanced dementia. Arch Intern Med 168: 357–362
Davies E, Higginson IJ (2004) Better palliative care for older people. World Health Organization (WHO), Geneva
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. J Palliat Med 11: 1023–1028
Ditto PH, Smucker WD, Danks JH, Jacobson JA, Houts RM, Fagerlin A, Coppola KM, Gready RM (2003) Stability of older adults’ preferences for life-sustaining medical treatment. Health Psychol 22: 605–615
Emanuel EJ, Emanuel LL (1998) The promise of a good death. Lancet 351 (Suppl 2): SII21–29
Fried TR, McGraw S, Agostini JV, Tinetti ME (2008) Views of older persons with multiple morbidities on competing outcomes and clinical decision-making. J Am Geriatr Soc 56: 1839–1844
Fuchs-Lacelle S, Hadjistavropoulos T, Lix L (2008) Pain assessment as intervention: a study of older adults with severe dementia. Clin J Pain 24: 697–707
Gessert CE, Haller IV, Kane RL, Degenholtz H (2006) Rural-urban differences in medical care for nursing home residents with severe dementia at the end of life. J Am Geriatr Soc 54: 1199–1205
Gillick MR (2000) Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 342: 206–210
Gillick MR (2004) Advance care planning. N Engl J Med 350: 7–8
Goldstein NE, Back AL, Morrison RS (2008) Titrating guidance: a model to guide physicians in assisting patients and family members who are facing complex decisions. Arch Intern Med 168: 1733–1739
Graham ID, Logan J, Bennett CL, Presseau J, O’Connor AM, Mitchell SL, Tetroe JM, Cranney A, Hebert P, Aaron SD (2007) Physicians’ intentions and use of three patient decision aids. BMC Med Inform Decis Mak 7: 20
Hadjistavropoulos T, Herr K, Turk DC, et al. (2007) An interdisciplinary expert consensus statement on assessment of pain in older persons. Clin J Pain 23 (1 Suppl): S1–43
Hanson JL (2008) Shared decision making: have we missed the obvious? Arch Intern Med 168: 1368–1370
Hebert RS, 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 study. J Palliat Med 9: 683–693
Hewitt M, Simone JV (1999) Ensuring quality cancer care. National Academies Press, Washington DC
Holmes HM, Sachs GA, Shega JW, Hougham GW, Cox Hayley D, Dale W (2008) Integrating palliative medicine into the care of persons with advanced dementia: identifying appropriate medication use. J Am Geriatr Soc 56: 1306–1311
Hughes JC, Robinson L, Volicer L (2005) Specialist palliative care in dementia. BMJ 330: 57–58
Jox RJ, Krebs M, Bickhardt J, Hessdörfer K, Roller S, Borasio GD (2008) How strictly should advance decisions be followed? The patients’ opinion. Palliat Med 22: 675–676
Kalisvaart KJ, Vreeswijk R, de Jonghe JF, van der Ploeg T, van Gool WA, Eikelenboom P (2006) Risk factors and prediction of postoperative delirium in elderly hip-surgery patients: implementation and validation of a medical risk factor model. J Am Geriatr Soc 54: 817–822
Karel MJ, Moye J, Bank A, Azar AR (2007) Three methods of assessing values for advance care planning: comparing persons with and without dementia. J Aging Health 19: 123–151
Kiely DK, Prigerson H, Mitchell SL (2008) Health care proxy grief symptoms before the death of nursing home residents with advanced dementia. Am J Geriatr Psychiatry 16: 664–673
Koopmans RT, van der Molen M, Raats M, Etterna TP (2009) Neuropsychiatric symptoms and quality of life in patients in the final phase of dementia. Int J Geriatr Psychiatry 24: 25–32
Koopmans RT, van der Sterren KJ, van der Steen JT (2007) The annatural endpoint of dementia: death from cachexia or dehydration following palliative care? Int J Geriatr Psychiatry 22: 350–355
Kruse RL, Mehr DR, Boles KE, Lave JR, Binder EF, Madsen R, D’Agostino RB (2004) Does hospitalization impact survival after lower respiratory infection in nursing home residents? Med Care 42: 860–870
Kunz M, Mylius V, Scharmann S, Schepelman K, Lautenbacher S (2009) Influence of dementia on multiple components of pain. Eur J Pain 13: 317–325
Lamberg JL, Person CJ, Kiely DK, Mitchell SL (2005) Decisions to hospitalize nursing home residents dying with advanced dementia. J Am Geriatr Soc 53: 1396–1401
Larson EB, Shadlen MF, Wang L, McCormick WC, Bowen JD, Teri L, Kukull WA (2004) Survival after initial diagnosis of Alzheimer disease. Ann Intern Med 140: 501–509
Lloyd-Williams M, Payne S (2002) Can multidisciplinary guidelines improve the palliation of symptoms in the terminal phase of dementia? Int J Palliat Nurs 8: 370–375
Loeb M, Carusone SC, Goeree R, Walter SD, Brazil K, Krueger P, Simor A, Moss L, Marrie T (2006) Effect of a clinical pathway to reduce hospitalizations in nursing home residents with pneumonia: a randomized controlled trial. JAMA 295: 2503–2510
Lorenz KA, Rosenfeld K, Wenger N (2007) Quality indicators for palliative and end-of-life care in vulnerable elders. J Am Geriatr Soc 55 (Suppl 2): S318–S326
Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM (2003) Patterns of functional decline at the end of life. JAMA 289: 2387–2392
Lynn J (2001) Perspectives on care at the close of life. Serving patients who may die soon and their families: the role of hospice and other services. JAMA 285: 925–932
McCarthy M, Addington-Hall J, Altmann D (1997) The experience of dying with dementia: a retrospective study. Int J Geriatr Psychiatry 12: 404–409
Menne HL, Whitlatch CJ (2007) Decision-making involvement of individuals with dementia. Gerontologist 47: 810–819
Miller SC, Kiely DK, Teno JM, Connor SR, Mitchell SL (2008) Hospice care for patients with dementia: does volume make a difference? J Pain Symptom Manage 35: 283–291
Miller SC, Teno JM, Mor V (2004) Hospice and palliative care in nursing homes. Clin Geriatr Med 20: 717–734
Mitchell SL, Kiely DK, Hamel MB (2004) Dying with advanced dementia in the nursing home. Arch Intern Med 164: 321–326
Mitchell SL, Kiely DK, Jones RN, Prigerson H, Volicer L, Teno JM (2006) Advanced dementia research in the nursing home: the CASCADE study. Alzheimer Dis Assoc Disord 20: 166–175
Mitchell SL, Kiely DK, Miller SC, Connor SR, Spence C, Teno JM (2007) Hospice care for patients with dementia. J Pain Symptom Manage 34: 7–16
Mitchell SL, Jeno JM, Miller SC, Mor V (2005) A national study of the location of death for older persons with dementia. J Am Geriatr Soc 53: 299–305. Erratum in: J Am Geriatr Soc 53: 741
Mitchell SL, Tetroe J, O’Connor AM. A decision aid for longterm tube feeding in cognitively impaired older persons. J Am Geriatr Soc 49: 313–316
Molloy DW, Guyatt GH, Russo R et al (2000) Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 283: 1437–1444
Morris JN, Fries BE, Mehr DR, Hawes C, Phillips C, Mor V, Lipsitz LA (1994) MDS Cognitive Performance Scale. J Gerontol 49: M174–182
Morris V (2004a) How to care for aging parents, 2nd edn. Workman Publishing, New York
Morris V (2004b) Talking about death. Algonquin Books of Chapel Hill, Chapel Hill, NC
Morrison RS, Meier DE (2003) Geriatric Palliative Care. Oxford University Press, New York
Morrison RS, Siu AL (2000a) Survival in end-stage dementia following acute illness. JAMA 284: 47–52
Morrison RS, Siu AL (2000b) A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture. J Pain Symptom Manage 19: 240–248
Munn JC, Hanson LC, Zimmerman S, Sloane PD, Mitchell CM (2006) Is hospice associated with improved end-of-life care in nursing homes and assisted living facilities? J Am Geriatr Soc 54: 490–495
Pautex S, Herrmann FR, Le Lous P, Ghedira M, Zulian GB, Michon A, Gold G (2007) Symptom relief in the last week of life: is dementia always a limiting factor? J Am Geriatr Soc 55: 1316–1317
Perkins HS (2007) Controlling death: the false promise of advance directives. Ann Intern Med 147: 51–57
Sampson EL, Ritchie CW, Lai R, Raven PW, Blanchard MR (2005) A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. Int Psychogeriatr 17: 31–40
Schulz R, Boerner K, Shear K, Zhang S, Gitlin LN (2006) Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. Am J Geriatr Psychiatry 14: 650–658
Sepúlveda C, Marlin A, Yoshida T, Ullrich A (2002) Palliative Care: the World Health Organization’s global perspective. J Pain Symptom Manage 24: 91–96
Seymour J, Sanders C, Clarke A, Welton M, Gott M (2006) Planning for choice in end-of-life care — educational guide. Help the Aged We Will, London
Shega JW, Houghan GW, Stocking CB, Cox-Hayley D, Sachs GA (2008) Patients dying with dementia: experience at the end of life and impact of hospice care. J Pain Symptom Manage 35: 499–507
Shield RR, Wetle T, Teno J, Miller SC, Welch L (2005) Physicians »missing in action«: family perspectives on physician and staffing problems in end-of-life care in the nursing home. J Am Geriatr Soc 53: 1651–1657
Sloane PD, Zimmerman S, Hanson L, Mitchell CM, Riedel-Leo C, Custis-Buie V (2003) End-of-life care in assisted living and related residential care settings: comparison with nursing homes. J Am Geriatr Soc 51: 1587–1594
Small N (2007) Living well until you die: quality of care and quality of life in palliative and dementia care. Ann N Y Acad Sci 1114: 194–203
Teno JM (2003) Advance care planning for frail, older persons. In: Morrison RS, Meier DE, Capello C (eds) Geriatric palliative care. Oxford University Press, New York, pp 307–313
Travis SS, Bernard M, Dixon S, McAuley WJ, Loving G, McClanahan L (2002) Obstacles to palliation and end-of-life care in a long-term care facility. Gerontologist 42: 342–349
van der Meulen A, Keij-Deerenberg I (2003) Sterfte aan dementie. Statistisch kwartaalblad over de demografie van Nederland (Statistics Netherlands; CBS) 51 (2) 24–28 http://www.cbs.nl/NR/rdonlyres/57D8293E-8EA9-4B53-B8C1-04DDEDFE1C00/0/2003k2b15p024art.pdf (in Dutch)
van der Steen JT, Gijsberts MJHE, Muller MT, Deliens L, Volicer L (2009a) Evaluations of end of life with dementia by families in Dutch and US nursing homes. Int Psychogeriatr (2009;21:321–329)
van der Steen JT, Kruse RL, Ooms ME, Ribbe MW, van der Wal G, Heintz LL, Mehr DR (2004) Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and The Netherlands; an ocean apart. J Am Geriatr Soc 52: 691–699
van der Steen JT, Mehr DR, Kruse RL, Ribbe MW, van der Wal G (2007c) Treatment strategy and risk of functional decline and mortality after nursing-home acquired lower respiratory tract infection: two prospective studies in residents with dementia. Int J Geriatr Psychiatry 22: 1013–1019
van der Steen JT, Mehr DR, Kruse RL, Sherman AK, Madsen RW, D’Agostino RB, Ooms ME, van der Wal G, Ribbe MW (2006) Predictors of mortality for lower respiratory infections in nursing home residents with dementia were validated transnationally. J Clin Epidemiol 59: 970–979
van der Steen JT, Mitchell SL, Frijters DH, Kruse RL, Ribbe MW (2007b) Prediction of 6-month mortality in nursing home residents with advanced dementia: validity of a risk score. J Am Med Dir Assoc 8: 464–468
van der Steen JT, Muller MT, Ooms ME, van der Wal G, Ribbe MW (2000) Decisions to treat or not to treat pneumonia in demented psychogeriatric nursing home patients: development of a guideline. J Med Ethics 26: 114–120
van der Steen JT, Pasman HRW, Ribbe MW, van der Wal G, Onwuteaka-Philipsen BD (2009b) Discomfort in dementia patients dying from pneumonia and its relief by antibiotics. Scand J Infect Dis (2009;41:143–151)
van der Steen JT, Ribbe MW (2007a) Dying with dementia: what do we know about it? Tijdschr Gerontol Geriatr 38: 288–297 (in Dutch)
Volicer L, Cantor MD, Derse AR, Edwards DM, Prudhomme AM, Gregory DC, Reagan JE, Tulsky JA, Fox E; National Ethics Committee Of The Veterans Health Administration (2002) Advance care planning by proxy for residents of longterm care facilities who lack decision-making capacity. J Am Geriatr Soc 50: 761–767
Volicer L, Rheaume Y, Brown J, Fabiszewski K, Brady R (1986) Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type. JAMA 256: 2210–2213
Williams MM, Xiong C, Morris JC, Galvin JE (2006) Survival and mortality differences between dementia with Lewy bodies vs. Alzheimer disease. Neurology 67: 1935–1941
Wittink MN, Morales KH, Meoni LA, Ford DE, Wang NY, Klag MJ, Gallo JJ (2008) Stability of preferences for end-of-life treatment after 3 years of follow-up: the Johns Hopkins Precursors Study. Arch Intern Med 168: 2125–2130
Wolf-Klein G, Pekmezaris R, Chin L, Weiner J (2007) Conceptualizing Alzheimer’s disease as a terminal medical illness. Am J Hosp Palliat Care 24: 77–82
World Health Organization (2002) National cancer control programmes: policies and managerial guidelines. 2nd ed. Geneva: World Health Organization. http://www.who.int/cancer/palliative/definition/en/
Zimmermann C, Riechelmann R, Krzyzanowska M, Rodin G, Tannock I (2008) Effectiveness of specialized palliative care: a systematic review. JAMA 299: 1698–1709
Zwakhalen SM, Hamers JP, Abu-Saad HH, Berger MP (2006) Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools. BMC Geriatr 6: 3
Zwakhalen SM, Koopmans RT, Geels PJ, Berger MP, Hamers JP (2009) The prevalence of pain in nursing home residents with dementia measured using an observational pain scale. Eur J Pain 13: 89–93
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2009 Springer Medizin Verlag Heidelberg
About this chapter
Cite this chapter
van der Steen, J.T., Deliens, L. (2009). End-of-life Care for Patients with Alzheimer’s Disease. In: Bährer-Kohler, S. (eds) Self Management of Chronic Disease. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-00326-4_9
Download citation
DOI: https://doi.org/10.1007/978-3-642-00326-4_9
Publisher Name: Springer, Berlin, Heidelberg
Print ISBN: 978-3-642-00325-7
Online ISBN: 978-3-642-00326-4
eBook Packages: MedicineMedicine (R0)