Management of End-Stage Dementia

  • David Lussier
    Corresponding author.
    Institut universitaire de gériatrie de Montréal, 4565 Queen-Mary, Montreal, QC, Canada H3W 1W5

    Department of Medicine, University of Montreal, C.P. 6128, Succursale Centre-Ville, Montreal, QC, Canada H3C 3J7

    Division of Geriatric Medicine, McGill University, 1650 Cedar Avenue, Montreal, QC, Canada H3G 1A4

    Alan-Edwards Centre for Research on Pain, McGill University, Suite 3100, Genome Building, 740 Doctor Penfield Avenue, Montreal, QC, Canada H3A 1A4
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  • Marie-Andrée Bruneau
    Institut universitaire de gériatrie de Montréal, 4565 Queen-Mary, Montreal, QC, Canada H3W 1W5

    Department of Psychiatry, University of Montreal, C.P. 6128, Succursale Centre-Ville, Montreal, QC, Canada H3C 3J7
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  • Juan Manuel Villalpando
    Institut universitaire de gériatrie de Montréal, 4565 Queen-Mary, Montreal, QC, Canada H3W 1W5

    Department of Medicine, University of Montreal, C.P. 6128, Succursale Centre-Ville, Montreal, QC, Canada H3C 3J7
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        • US Census Bureau
        International data base.
        (Available at:) (Accessed July 22, 2010)
        • US Census Bureau
        Expectations of life at birth, 1970 to 2006, and projections, 2010 to 2020.
        (Available at:) (Accessed July 22, 2010)
        • National Statistics
        Government actuary’s department for expectation of life data. ONS for healthy life expectancy data.
        (Published on 26 February 2010. Available at:) (Accessed August 18, 2010)
        • Rao A.V.
        • Cohen H.J.
        Oncology and aging: general principles.
        in: Halter J.B. Ouslander J.G. Tinetti M.E. Hazzard’s geriatric medicine and gerontology. 6th edition. McGraw-Hill, New York2009: 1123-1135
        • American Psychiatric Association Committee on Nomenclature and Statistics
        Diagnostic and statistical manual on mental disorders, fourth edition (DSM IV). Diagnostic criteria.
        American Psychiatric Association, Washington, DC1994
        • O’Connor D.W.
        in: Burns A. O’Brien J. Ames D. Dementia. 3rd edition. Edward Arnold, London2005: 16-23
        • Langa K.M.
        • Foster N.L.
        • Larson E.B.
        Mixed dementia: emerging concepts and therapeutic implications.
        J Am Med Assoc. 2004; 292: 2901-2908
        • McKahnn G.
        • Drachman D.
        • Flostein M.
        • et al.
        Clinical diagnosis of Alzheimer’s disease: report of the NINCDS-ADRDA work group under the auspices of the Department of Health and Human Services task force.
        Neurology. 1984; 47: 1113-1124
        • Roman G.C.
        • Erkinjuntti T.
        • Wallin A.
        • et al.
        Subcortical ischaemic vascular dementia.
        Lancet Neurol. 2002; 1: 426-436
        • Burns A.
        • O’Brien J.
        • Auriacombe S.
        • et al.
        Clinical practice with anti-dementia drugs: a consensus statement from British association for psychopharmacology.
        J Psychopharmacol. 2006; 20: 732-755
        • Roman G.
        Therapeutic strategies for vascular dementia.
        in: Burns A. O’Brien J. Ames D. Dementia. 3rd edition. Edward Arnold, London2005: 574-600
        • Birch D.
        • Draper J.
        A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia.
        J Clin Nurs. 2008; 17: 1144-1163
        • Shuster Jr., J.L.
        Palliative care for advanced dementia.
        Clin Geriatr Med. 2000; 16: 373-386
        • Corey-Bloom J.
        • Fleisher A.S.
        The natural history of Alzheimer’s disease.
        in: Burns A. O’Brien J. Ames D. Dementia. 3rd edition. Edward Arnold, London2005: 376-386
        • McKeith I.G.
        • Ince P.
        • Jaros E.B.
        • et al.
        What are the relations between Lewy body disease and AD?.
        J Neural Transm Suppl. 1998; 54: 107-116
        • Rockwood K.
        • Wentzel C.
        • Hachinski V.
        • et al.
        Prevalence and outcomes of vascular cognitive impairment. Vascular cognitive impairment investigators of the Canadian study of health and aging.
        Neurology. 2000; 54: 447-451
        • Newhouse P.
        • Lasek J.
        Assessment and diagnosis of severe dementia.
        in: Burns A. Winblad B. Severe dementia. John Wiley, Chichester (UK)2006: 3-20
        • Reisberg B.
        • Ferris S.H.
        • de Leon M.J.
        • et al.
        The global deterioration scale for assessment of primary degenerative dementia.
        Am J Psychiatry. 1982; 139: 1136-1139
        • Vellas B.
        • Gauthier S.
        • Allain H.
        • et al.
        Consensus statement on dementia of Alzheimer type in the severe stage.
        J Nutr Health Aging. 2005; 9: 330-338
        • Saxton J.
        • Swihart A.A.
        Neuropsychological assessment of the severely impaired elderly patient.
        Clin Geriatr Med. 1989; 5: 531-543
        • Albert M.
        • Cohen C.
        The test for severe impairment: an instrument for the assessment of patients with severe cognitive dysfunction.
        J Am Geriatr Soc. 1992; 40: 449-453
        • Mitchell S.L.
        • Teno J.M.
        • Kiely D.K.
        • et al.
        The clinical course of advanced dementia.
        N Engl J Med. 2009; 361: 1529-1538
        • Larson E.B.
        • Shadlen M.F.
        • Wang L.
        • et al.
        Survival after initial diagnosis of Alzheimer disease.
        Ann Intern Med. 2004; 140: 501-509
        • McCarthy M.
        • Addington-Hall J.
        • Altmann D.
        The experience of dying with dementia: a retrospective study.
        Int J Geriatr Psychiatry. 1997; 12: 404-409
        • Casarett D.
        • Takesaka J.
        • Karlawish J.
        • et al.
        How should clinicians discuss hospice for patients with dementia? Anticipating caregivers’ preconceptions and meeting their information needs.
        Alzheimer Dis Assoc Disord. 2002; 16: 116-122
        • Koopmans R.T.
        • Roeline H.
        • Pasman W.
        • et al.
        Palliative care in patients with severe dementia.
        in: Burns A. Winblad B. Severe dementia. John Wiley, Chichester (UK)2006: 205-213
        • Herlitz J.
        • Eek M.
        • Engdahl J.
        • et al.
        Factors at resuscitation and outcome among patients suffering from out of hospital cardiac arrest in relation to age.
        Resuscitation. 2003; 58: 309-317
        • Mitchell S.L.
        • Kiely D.K.
        • Hamel M.B.
        Dying with advanced dementia in the nursing home.
        Arch Intern Med. 2004; 164: 321-326
        • Volandes A.E.
        • Abbo E.D.
        Flipping the default: a novel approach to cardiopulmonary resuscitation in end-stage dementia.
        J Clin Ethics. 2007; 18: 122-139
        • Hoffer L.J.
        Tube feeding in advanced dementia: the metabolic perspective.
        BMJ. 2006; 333: 1214-1215
        • Mitchell S.L.
        • Teno J.M.
        • Roy J.
        • et al.
        Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment.
        J Am Med Assoc. 2003; 290: 73-80
        • Gillick M.R.
        Rethinking the role of tube feeding in patients with advanced dementia.
        N Engl J Med. 2000; 342: 206-210
        • Sampson E.L.
        • Candy B.
        • Jones L.
        Enteral tube feeding for older people with advanced dementia.
        Cochrane Database Syst Rev. 2009; 2 (CD007209)
        • Finucane T.E.
        • Christmas C.
        • Travis K.
        Tube feeding in patients with advanced dementia: a review of the evidence.
        J Am Med Assoc. 1999; 282: 1365-1370
        • Volicer L.
        Palliative medicine in dementia.
        in: Hanks G. Cherny N.I. Christakis N.A. Oxford textbook of palliative medicine. 4th edition. Oxford University Press, Oxford (UK)2010: 1376-1385
        • Australia national palliative care program
        Guidelines for a palliative approach in residential aged care, enhanced version.
        (Available at:) (Accessed July 22, 2010)
        • Palecek E.J.
        • Teno J.M.
        • Casarett D.J.
        • et al.
        Comfort feeding only: a proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia.
        J Am Geriatr Soc. 2010; 58: 580-584
        • Mitchell S.L.
        • Tetroe J.
        • O’Connor A.M.
        A decision aid for long-term tube feeding in cognitively impaired older persons.
        J Am Geriatr Soc. 2001; 49: 313-316
        • Jenkins C.A.
        • Schulz M.
        • Hanson J.
        • et al.
        Demographic, symptom, and medication profiles of cancer patients seen by a palliative care consult team in a tertiary referral hospital.
        J Pain Symptom Manage. 2000; 19: 174-184
        • Viola R.A.
        • Wells G.A.
        • Peterson J.
        The effects of fluid status and fluid therapy on the dying: a systematic review.
        J Palliat Care. 1997; 13: 41-52
        • Simmons S.F.
        • Alessi C.
        • Schnelle J.F.
        An intervention to increase fluid intake in nursing home residents: prompting and preference compliance.
        J Am Geriatr Soc. 2001; 49: 926-933
        • Robinson S.B.
        • Rosher R.B.
        Can a beverage cart help improve hydration?.
        Geriatr Nurs. 2002; 23: 208-211
        • Thompson R.S.
        • Hall N.K.
        • Szpiech M.
        • et al.
        Treatments and outcomes of nursing-home-acquired pneumonia.
        J Am Board Fam Pract. 1997; 10: 82-87
        • Afzal N.
        • Buhagiar K.
        • Flood J.
        • et al.
        Quality of end-of-life care for dementia patients during acute hospital admission: a retrospective study in Ireland.
        Gen Hosp Psychiatry. 2010; 32: 141-146
        • Congedo M.
        • Causarano R.I.
        • Alberti F.
        • et al.
        Ethical issues in end of life treatments for patients with dementia.
        Eur J Neurol. 2010; 17: 774-779
        • Volicer L.
        • Rheaume Y.
        • Brown J.
        • et al.
        Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type.
        J Am Med Assoc. 1986; 256: 2210-2213
        • van der Steen J.T.
        • Kruse R.L.
        • Ooms M.E.
        • et al.
        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. 2004; 52: 691-699
        • van der Steen J.T.
        • Mehr D.R.
        • Kruse R.L.
        • et al.
        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. 2007; 22: 1013-1019
        • Kruse R.L.
        • Mehr D.R.
        • van der Steen J.T.
        • et al.
        Antibiotic treatment and survival of nursing home patients with lower respiratory tract infection: a cross-national analysis.
        Ann Fam Med. 2005; 3: 422-429
        • van der Steen J.T.
        • Meuleman-Peperkamp I.
        • Ribbe M.W.
        Trends in treatment of pneumonia among Dutch nursing home patients with dementia.
        J Palliat Med. 2009; 12: 789-795
        • Parsons C.
        • Hughes C.M.
        • Passmore A.P.
        • et al.
        Withholding, discontinuing and withdrawing medications in dementia patients at the end of life: a neglected problem in the disadvantaged dying?.
        Drugs Aging. 2010; 27: 435-449
        • Holmes H.M.
        • Sachs G.A.
        • Shega J.W.
        • et al.
        Integrating palliative medicine into the care of persons with advanced dementia: identifying appropriate medication use.
        J Am Geriatr Soc. 2008; 56: 1306-1311
        • Waldemar G.
        • Dubois B.
        • Emre M.
        • et al.
        Recommendations for the diagnosis and management of Alzheimer’s disease and other disorders associated with dementia: EFNS guideline.
        Eur J Neurol. 2007; 14: e1-e26
        • Herrmann N.
        • Gauthier S.
        Diagnosis and treatment of dementia: 6. Management of severe Alzheimer disease.
        CMAJ. 2008; 179: 1279-1287
        • Shega J.W.
        • Ellner L.
        • Lau D.T.
        • et al.
        Cholinesterase inhibitor and N-methyl-d-aspartic acid receptor antagonist use in older adults with end-stage dementia: a survey of hospice medical directors.
        J Palliat Med. 2009; 12: 779-783
        • Sengstaken E.A.
        • King S.A.
        The problems of pain and its detection among geriatric nursing home residents.
        J Am Geriatr Soc. 1993; 41: 541-544
        • Scherder E.
        • Herr K.
        • Pickering G.
        • et al.
        Pain in dementia.
        Pain. 2009; 145: 276-278
        • Ferrell B.A.
        • Ferrell B.R.
        • Osterweil D.
        Pain in the nursing home.
        J Am Geriatr Soc. 1990; 38: 409-414
        • Morrison R.S.
        • Siu A.L.
        A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture.
        J Pain Symptom Manage. 2000; 19: 240-248
        • American Geriatrics Society panel on persistent pain in older persons
        The management of persistent pain in older persons.
        J Am Geriatr Soc. 2002; 50: S205-S224
        • Fuchs-Lacelle S.
        • Hadjistavropoulos T.
        Development and preliminary validation of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC).
        Pain Manag Nurs. 2004; 5: 37-49
        • Hadjistavropoulos T.
        • Herr K.
        • Turk D.C.
        • et al.
        An interdisciplinary expert consensus statement on assessment of pain in older persons.
        Clin J Pain. 2007; 23: S1-S43
        • Zwakhalen S.M.
        • Hamers J.P.
        • Berger M.P.
        The psychometric quality and clinical usefulness of three pain assessment tools for elderly people with dementia.
        Pain. 2006; 126: 210-220
        • Lussier D.
        • Pickering G.
        Pharmacological considerations in older patients.
        in: Beaulieu P. Lussier D. Porreca F. Dickenson A.H. Pharmacology of pain. IASP Press, Seattle (WA)2010: 547-565
        • American Geriatrics Society Panel on Pharmacological Management of Persistent Pain in Older Persons
        Pharmacological management of persistent pain in older persons.
        J Am Geriatr Soc. 2009; 57: 1331-1346
        • Craig D.
        • Mirakhur A.
        • Hart D.J.
        • et al.
        A cross-sectional study of neuropsychiatric symptoms in 435 patients with Alzheimer’s disease.
        Am J Geriatr Psychiatry. 2005; 13: 460-468
        • Thompson C.
        • Brodaty H.
        • Trollor J.
        • et al.
        Behavioral and psychological symptoms associated with dementia subtype and severity.
        Int Psychogeriatr. 2010; 22: 300-305
        • Gauthier S.
        • Cummings J.
        • Ballard C.
        • et al.
        Management of behavioral problems in Alzheimer’s disease.
        Int Psychogeriatr. 2010; 22: 346-372
        • Hurt C.
        • Bhattacharyya S.
        • Burns A.
        • et al.
        Patient and caregiver perspectives of quality of life in dementia. An investigation of the relationship to behavioural and psychological symptoms in dementia.
        Dement Geriatr Cogn Disord. 2008; 26: 138-146
        • Kverno K.S.
        • Black B.S.
        • Blass D.M.
        • et al.
        Neuropsychiatric symptom patterns in hospice-eligible nursing home residents with advanced dementia.
        J Am Med Dir Assoc. 2008; 9: 509-515
        • Koopmans R.T.
        • van der Molen M.
        • Raats M.
        • et al.
        Neuropsychiatric symptoms and quality of life in patients in the final phase of dementia.
        Int J Geriatr Psychiatry. 2009; 24: 25-32
        • Volicer L.
        • Van der Steen J.T.
        • Frijters D.H.
        Modifiable factors related to abusive behaviors in nursing home residents with dementia.
        J Am Med Dir Assoc. 2009; 10: 617-622
        • Kverno K.S.
        • Black B.S.
        • Nolan M.T.
        • et al.
        Research on treating neuropsychiatric symptoms of advanced dementia with non-pharmacological strategies, 1998–2008: a systematic literature review.
        Int Psychogeriatr. 2009; 21: 825-843
        • van Weert J.C.
        • van Dulmen A.M.
        • Spreeuwenberg P.M.
        • et al.
        Behavioral and mood effects of snoezelen integrated into 24-hour dementia care.
        J Am Geriatr Soc. 2005; 53: 24-33
        • Ballard C.
        • Waite J.
        The effectiveness of atypical antipsychotics for the treatment of aggression and psychosis in Alzheimer’s disease.
        Cochrane Database Syst Rev. 2006; 1 (CD003476)
        • Mintzer J.E.
        • Tune L.E.
        • Breder C.D.
        • et al.
        Aripiprazole for the treatment of psychoses in institutionalized patients with Alzheimer dementia: a multicenter, randomized, double-blind, placebo-controlled assessment of three fixed doses.
        Am J Geriatr Psychiatry. 2007; 15: 918-931
        • McShane R.
        • Areosa Sastre A.
        • Minakaran N.
        Memantine for dementia.
        Cochrane Database Syst Rev. 2006; 2 (CD003154)
        • Pollock B.G.
        • Mulsant B.H.
        • Rosen J.
        • et al.
        A double-blind comparison of citalopram and risperidone for the treatment of behavioral and psychotic symptoms associated with dementia.
        Am J Geriatr Psychiatry. 2007; 15: 942-952
        • Lanctôt K.L.
        • Herrmann N.
        • van Reekum R.
        • et al.
        Gender, aggression and serotonergic function are associated with response to sertraline for behavioral disturbances in Alzheimer’s disease.
        Int J Geriatr Psychiatry. 2002; 17: 531-541
        • Sultzer D.L.
        • Gray K.F.
        • Gunay I.
        • et al.
        A double-blind comparison of trazodone and haloperidol for treatment of agitation in patients with dementia.
        Am J Geriatr Psychiatry. 1997; 5: 60-69
        • Tariot P.N.
        • Erb R.
        • Podgorski C.A.
        • et al.
        Efficacy and tolerability of carbamazepine for agitation and aggression in dementia.
        Am J Psychiatry. 1998; 155: 54-61
        • Passmore M.J.
        The cannabinoid receptor agonist nabilone for the treatment of dementia-related agitation.
        Int J Geriatr Psychiatry. 2008; 23: 116-117
        • Mahlberg R.K.
        • Sutej I.
        • Kühl K.P.
        • et al.
        Melatonin treatment of day-night rhythm disturbances and sundowning in Alzheimer disease: an open-label pilot study using actigraphy.
        J Clin Psychopharmacol. 2004; 24: 456-459
      1. Chronic pain management in the long-term care setting: clinical practice guidelines.
        American Medical Directors Association, Columbia (MD)1999
        • Manfredi P.L.
        • Breuer B.
        • Wallenstein S.
        • et al.
        Opioid treatment for agitation in patients with advanced dementia.
        Int J Geriatr Psychiatry. 2003; 18: 700-705
        • Bielinski K.
        • Lawlor B.
        Depression in severe dementia.
        in: Burns A. O’Brien J. Ames D. Dementia. 3rd edition. Edward Arnold, London2005: 63-74
        • Boyle P.A.
        • Malloy P.F.
        Treating apathy in Alzheimer’s disease.
        Dement Geriatr Cogn Disord. 2004; 17: 91-99
        • Magai C.
        • Kennedy G.
        • Cohen C.I.
        • et al.
        A controlled clinical trial of sertraline in the treatment of depression in nursing home patients with late-stage Alzheimer’s disease.
        Am J Geriatr Psychiatry. 2000; 8: 66-74