Sterben mit Demenz

Zusammenfassung

Etwa ein Drittel aller älteren Menschen stirbt mit einer Demenz; dies stellt besondere Anforderungen an Angehörige, Pflege und medizinische Versorgung, die bisher nur teilweise erfüllt werden. In dieser Übersicht zur aktuellen Literatur stellen wir epidemiologische Risikofaktoren der Mortalität dementer Patienten dar (z. B. Alter, somatische Komorbidität, neuropsychiatrische Symptome), die aktuelle Versorgungssituation (Sterbeorte, Weichenstellungen, Komplikationen, Therapie, Sterbeverlauf, unmittelbare Todesursachen, Suizide, hinterbliebene Angehörige) und Instrumente zur Beurteilung von Schmerzen, Belastung, Lebensqualität, Prognose und Therapie-Planung bei dementen Patienten im letzten Krankheitsstadium. Wir schlagen einen problemorientierten Algorithmus für Therapie-Entscheidungen vor, der Bezug nimmt auf Lebensqualität und Lebensverlängerung. Danach benennen wir einige Bereiche, in denen eine Optimierung möglich erscheint.

Abstract

A third of the elderly population dies with dementia. This poses major and partly unmet needs on relatives, professional carers and medical specialists. Our review summarizes epidemiological risk factors for the increased mortality in demented patients (age, somatic co-morbidity, neuropsychiatric symptoms), current practice (place of death, decision making, complications, medical treatment, course of dying, cause of death, suicide, bereaved relatives), and instruments for the assessment of pain, burden, prognosis and treatment planning in the terminal stage of illness. We describe the current legal situation in Germany and present a brief outline of practical management issues. We also list a number of areas offering leeway for improvement regarding research, training, psycho-education, preparation, diagnosis, treatment and support.

Schlüsselwörter

Sterben - Alzheimer - Demenz - Mortalität - Patientenverfügung - Todesursachen - Suizid - Schmerz - Palliativmedizin

Keywords

dying - Alzheimer - dementia - mortality - cause of death - suicide - pain - palliative care

Literatur

• 1 Brayne C, Gao L, Dewey M. et al . Medical Research Council Cognitive Function and Ageing Study Investigators. Dementia before death in ageing societies – the promise of prevention and the reality.  PLoS Med. 2006;  3 e397
• 2 Schäufele M, Bickel H, Weyerer S. Predictors of mortality among demented elderly in primary care.  Int J Geriatr Psychiatry. 1999;  14 946-956
• 3 Osthgate C, Gaertner J, Voltz R. Cognitive failure in end of life.  Curr Opinio Support Palliat Care. 2008;  2 187-191
• 4 Zilkens R R, Spilsbury K, Bruce D G. et al . Linkage of hospital and death records increased identification of dementia cases and death rate estimates.  Neuroepidemiology. 2009;  32 61-69
• 5 Aminoff B Z, Adunsky A. Dying dementia patients: too much suffering, too little palliation.  Am J Alzheimers Dis Other Demen. 2004;  19 243-247
• 6 Alzheimer’s Association . 2009 Alzheimer’s disease facts and figures.  Alzheimers Dement. 2009;  5 234-270
• 7 Gühne U, Matschinger H, Angermeyer M C. et al . Incident dementia cases and mortality. Results of the Leipzig Longitudinal Study of the Aged (LEILA75 + ).  Dement Geriatr Cogn Disord. 2006;  22 185-193
• 8 Ganguli M, Dodge H H, Shen C. et al . Alzheimer disease and mortality: a 15-year epidemiological study.  Arch Neurol. 2005;  62 779-784
• 9 Helmer C, Joly P, Letenneur L. et al . Mortality with dementia: results from a French prospective community-based cohort.  Am J Epidemiol. 2001;  154 642-648
• 10 Tschanz J T, Corcoran C, Skoog I. et al . Dementia: the leading predictor of death in a defined elderly population: the Cache County Study.  Neurology. 2004;  62 1156-1162
• 11 Dewey M E, Saz P. Dementia, cognitive impairment and mortality in persons aged 65 and over living in the community: a systematic review of the literature.  Int J Geriatr Psychiatry. 2001;  16 751-761
• 12 Aminoff B Z, Adunsky A. Their last 6 months: suffering and survival of end-stage dementia patients.  Age Ageing. 2006;  35 597-601
• 13 Nitrini R, Caramelli P, Herrera Jr E. et al . Mortality from dementia in a community-dwelling Brazilian population.  Int J Geriatr Psychiatry. 2005;  20 247-253
• 14 Schonwetter R S, Han B, Small B J. et al . Predictors of six-months survival aming patients with dementia: an evaluation of hospice Medicare guidelines.  Am J Hosp Palliat Care. 2003;  20 105-113
• 15 Stump T E, Callahan C M, Hendrie H C. Cognitive impairment and mortality in older primary care patients.  J Am Geriat Soc. 2001;  49 934-940
• 16 Alonso A, Jacobs D R, Menotti Jr A. et al . Cardiovascular risk factors and dementia mortality: 40 years of follow-up in the Seven Countries Study.  J Neurol Sci. 2009;  280 79-83
• 17 Sampson E L, Thuné-Boyle I, Kukkastenvehmas R. et al . Palliative care in advanced dementia. A mixed methods approach for the development of a complex intervention.  BMC Palliat Care. 2008;  7 8
• 18 Keller H H, Ostbye T. Do nutrition indicators predict death in elderly Canadians with cognitive impairment?.  Can J Public Health. 2000;  91 220-224
• 19 Steen J T, Mehr D R, Kruse R L. et al . Predictors of mortality for lower respiratory infections in nursing home residents with dementia were validated transnationally.  J Clin Epidemiol. 2006;  59 970-979
• 20 Ostbye van der T, Steenhuis R, Wolfson C. et al . Predictors of five-year mortality in older Canadians: the Canadian Study of Health and Aging.  J Am Geriat Soc. 1999;  47 1249-1254
• 21 Hui J S, Wilson R S, Bennett D A. et al . Rate of cognitive decline and mortality in Alzheimer’s disease.  Neurology. 2003;  25 1356-1361
• 22 Bellelli G, Frisoni G B, Turco R. et al . Depressive symptoms combined with dementia affect 12-months survival in elderly patients after rehabilitation post-hip fracture surgery.  Int J Geriatr Psychiatry. 2008;  23 1073-1077
• 23 Draper B, Brodaty H, Low L F. et al . Prediction of mortality in nursing home residents: impact of passive self-harm behaviors.  Int Psychogeriatr. 2003;  15 187-196
• 24 Förstl H, Besthorn C, Geiger-Kabisch C. et al . Psychotic features and the course of Alzheimer’s disease: relationship to cognitive, electroencephalographic and computerized tomography findings.  Acta Psychiatr Scand. 1993;  87 395-399
• 25 Scarmeas N, Brandt J, Albert M. et al . Delusions and hallucinations are associated with worse outcome in Alzheimer’s disease.  Arch Neurol. 2006;  62 1601-1608
• 26 Wilson R S, Tang Y, Aggarwal N T. et al . Hallucination, cognitive decline, and death in Alzheimer’s disease.  Neuroepidemiology. 2006;  26 68-75
• 27 Kiely D K, Marcantonio E R, Inouye S K. et al . Persistent delirium predicts mortality.  J Am Geriatr Soc. 2009;  57 55-61
• 28 Ballard C, Hanney M L, Theodoulou M. et al . The dementia withdrawal trial (DART-AD): long-term follow-up of a randomised placebo-controlled trial.  Lancet Neurol. 2009;  8 151-157
• 29 Simoni-Wastila L, Ryder P T, Qian J. et al . Association of antipsychotic use with hospital events and mortality among medicare beneficiaries residing in long-term care facilities.  Am J Geriat Psychiatry. 2009;  17 417-427
• 30 Fernandez H H, Lapane K L. Predictors of mortality among nursing home residents with a diagnosis of Parkinson’s disease.  Med Sci Monit. 2002;  8 CR241-CR246
• 31 Porock D, Oliver D P, Zweig S. et al . Predicting death in the nursing home: development and validation of the 6-month Minimum Data Set mortality risk index.  J Gerontol A Biol Sci Med Sci. 2005;  60 491-498
• 32 Rosenwax L, McNamara B, Zilkens R. A population-based retrospective cohort study comparing care for Western Australians with and without Alzheimer’s disease in the last year of life.  Health Soc Care Community. 2009;  17 36-44
• 33 Mitchell S L, Teno J M, Miller S C. et al . A national study of the location of death for older persons with dementia.  J Am Geriatr Soc. 2005;  53 299-305
• 34 Mitchell S L, Kiely D K, Hamel M B. Dying with advanced dementia in the nursing home.  Arch Intern Med. 2004;  164 321-326
• 35 Kay D W, Forster D P, Newens A J. Long-term survival, place of death, and death certification in clinically diagnosed pre-senile dementia in northern England. Follow-up after 8 – 12 years.  Br J Psychiatry. 2000;  177 156-162
• 36 Mitchell S L, Kiely D K, Miller S C. et al . Hospice care for patients with dementia.  J Pain Symptom Manage. 2007;  34 7-16
• 37 Rowe M A, Bennett V. A look at deaths occurring in persons with dementia lost in the community.  Am J Alzheimers Dis Other Demen. 2003;  18 343-348
• 38 Post S G. Alzheimer disease and the ”then” self.  Kennedy Inst Ethics J. 1995;  5 307-321
• 39 Herthogh C M, Boer M E, Dröes R M. et al . Would we rather lose our life than lose our self? Lessons from the Dutch debate on euthanasia for patients with dementia.  Am J Bioeth. 2007;  7 48-56
• 40 Förstl de H. Lebenswille statt Euthanasie – Innen- statt Aussenansichten neurodegenerativer Erkrankungen.  Dtsch Ärzteblatt. 2008;  105 395-396
• 41 Harwood D G, Sultzer D L. ”Life is not worth living”: hopelessness in Alzheimer’s disease.  J Geriat Psychiatry Neurol. 2002;  15 38-43
• 42 Haydar Z R, Lowe A J, Kahveci K L. et al . Differences in end-of-life preferences between congestive heart failure and dementia in a medical house calls program.  J Am Geriatr Soc. 2004;  52 736-740
• 43 Forbes S, Bern-Klug M, Gessert C. End-of-life decision making for nursing home residents with dementia.  J Nurs Scholarsh. 2000;  32 251-258
• 44 Russell C, Middleton H, Shanley C. Dying with dementia: the views of family caregivers about quality of life.  Australias J Ageing. 2008;  27 89-92
• 45 Coetzee R H, Leask S J, Jones R G. The attitudes of carers and old age psychiatrists towards the treatment of potentially fatal events in end-stage dementia.  Int J Geriatr Psychiatry. 2003;  18 169-173
• 46 Lamberg J L, Person C J, Kiely D K. et al . Decisions to hospitalize nursing home residents dying with advanced dementia.  J Am Geriatr Soc. 2005;  53 1396-101
• 47 Mitchell S L, Morris J N, Park P S. et al . Terminal care for persons with advanced dementia in the nursing home and home care settings.  J Palliat Med. 2004;  7 808-816
• 48 Eeles E, Rockwood K. Delirium in the long-term care setting: clinical and research challenges.  J Am Med Dir Assoc. 2008;  9 157-161
• 49 Bickel H, Gradinger R, Kochs E. et al . High risk of cognitive and functional decline after postoperative delirium. A three-year prospective study.  Dement Geriatr Cogn Disord. 2008;  26 26-31
• 50 Wada H, Nakajoh K, Satoh-Nakagawa T. et al . Risk factors of aspiration pneumonia in Alzheimer’s disease patients.  Gerontology. 2001;  47 271-276
• 51 Chen J H, Lamberg J L, Chen Y C. et al . Occurrence and treatment of suspected pneumonia in long-term care residents dying with advanced dementia.  J Am Geriatr Soc. 2006;  54 290-295
• 52 Steen J T, Ooms M E, Wal van der G. et al . Pneumonia: the demented patient’s best friend? Discomfort after starting or withholding antibiotic treatment.  J Am Geriatr Soc. 2002;  50 1681-1688
• 53 Di Giulio P, Toscani F, Villani D. et al . Dying with advanced dementia in long-term care geriatric institutions: a retrospective study.  J Palliat Med. 2008;  11 1023-1028
• 54 Evers van der M M, Purohit D, Perl D. et al . Palliative and aggressive end-of-life care for patients with dementia.  Psychiatric Services. 2002;  53 609-613
• 55 Steen J T, Wal van der G, Mehr van der D R. et al . End-of-life decision making in nursing home residents with dementia and pneumonia: Dutch physicians’ intentions regarding hastening death.  Alzheimer Dis Assoc Disord. 2005;  19 148-155
• 56 Fabiszewski K J, Volicer B, Volicer L. Effect of antibiotic treatment on outcome of fevers in instituzionalized Alzheimer patients.  J Am Med Assoc. 1990;  263 3168-3172
• 57 Cervo F A, Bryan L, Farber S. To PEG or not to PEG: a review of evidence for placing feeding tubes in advanced dementia and the decision-making process.  Geriatrics. 2006;  61 12-13
• 58 Gillick M R, Volandes A E. The standard of caring: why do we still use feeding tubes in patients with advanced dementia?.  J Am Med Dir Assoc. 2008;  9 364-367
• 59 Bayerisches Sozialministerium .Leitfaden künstliche Ernährung und Flüssigkeitsversorgung. 2008 http://www.arbeitsministerium.bayern.de/pflege/pflegeausschuss/kuern-leitfaden.pdf
• 60 Erkut Z A, Klooker T, Endert E. et al . Stress of dying is not suppressed by high-dose morphine or by dementia.  Neuropsychopharmacology. 2004;  29 152-157
• 61 Wilden B M, Wright N E. Concept of pre-death. Restlessness in dementia.  J Gerontol Nurs. 2002;  28 24-29
• 62 Hassing L B, Johansson B, Berg S. et al . Terminal decline and markers of cerebro- and cardiovascular disease: findings from a longitudinal study of the oldest old.  J Gerontol B Psychol Sci Soc Sci. 2002;  57 P268-P276
• 63 Small B J, Fratiglioni L, Strauss von E. et al . Terminal decline and cognitive performance in very old age: does cause of death matter?.  Psychol Aging. 2003;  18 193-202
• 64 Kayser-Jones J. The experience of dying: an ethnographic nursing home study.  Gerontologist. 2002;  42 (Spec No 3) 11-19
• 65 Attems J, König C, Huber M. et al . Cause of death in demented and non-demented elderly inpatients, an autopsy study of 308 cases.  J Alzheimers Dis. 2005;  8 57-62
• 66 Brunnström H R, Englund E M. Cause of death in patients with dementia disorders.  Eur J Neurol. 2009;  16 488-492
• 67 Chamandy N, Wolfson C. Underlying cause of death in demented and non-demented elderly Canadians.  Neuroepidemiology. 2005;  25 75-84
• 68 Fu C, Chute D J, Farag E S. et al . Comorbidity in dementia: an autopsy study.  Arch Pathol Lab Med. 2004;  128 32-38
• 69 Goldberg T H, Botero A. Causes of death in elderly nursing home residents.  J Am Med Dir Assoc. 2008;  9 565-567
• 70 Keene J, Hope T, Fairburn C G. et al . Death and dementia.  Int J Geriatr Psychiatry. 2001;  16 969-674
• 71 Koopmans R T, Sterren K J, Steen van der J T. The ‘natural’ endpoint of dementia: death from cachexia or dehydration following palliative care?.  Int J Geriatr Psychiatry. 2007;  22 350-355
• 72 Draper van der B, MacCuspie-Moore C, Brodaty H. Suicidal ideation and the ”wish to die” in dementia patients: the role of depression.  Age & Ageing. 1998;  27 503-507
• 73 Schneider B, Maurer K, Frölich L. Demenz und Suizid.  Fortschritte der Neurol Psychiat. 2001;  69 164-169
• 74 Peisah C, Snowdon J, Gorrie C. et al . Investigation of Alzheimer’s disease-related pathology in community dwelling older subjects who committed suicide.  J Affect Disord. 2007;  99 127-132
• 75 Purandare N, Voshaar R C, Rodway C. et al . Suicide in dementia: 9-year national clinical survey in England and Wales.  Brit J Psychiat. 2009;  194 175-180
• 76 Barak Y, Aizenberg D. Suicide amongst Alzheimer’s disease patients: a 10-year survey.  Dement Geriat Cogn Disord. 2002;  14 101-103
• 77 Lim W S, Rubin E H, Coats M. et al . Early-stage Alzheimer disease represents increased suicidal risk in relation to later stages.  Alzheimer Dis Assoc Disord. 2005;  19 214-219
• 78 Erlangsen A, Zarit S H, Conwell Y. Hospital-diagnosed dementia and suicide: a longitudinal study using prospective, nationwide register data.  Am J Geriatr Psychiatry. 2008;  16 220-228
• 79 Starkstein S E, Jorge R, Mizrahi R. et al . Insight and danger in Alzheimer’s disease.  Eur J Neurol. 2007;  14 455-460
• 80 Ferris S H, Hofeldt G T, Carbone G. et al . Suicide in two patients with a diagnosis of probable Alzheimer disease.  Alzheimer Dis Assoc Disord. 1999;  13 88-90
• 81 Rubio A, Vestner A L, Stewart J M. et al . Suicide and Alzheimer’s pathology in the elderly: a case-control study.  Biol Psychiatry. 2001;  49 137-145
• 82 Goy E, Ganzini L. End-of-life care in geriatric psychiatry.  Clin Geriatr Med. 2003;  19 841-856, vii–viii
• 83 Schulz R, Boerner K, Shear K. et al . Predictors of complicated grief among dementia caregivers: a prospective study of bereavement.  Am J Geriat Psychiat. 2006;  14 650-658
• 84 Hebert R S, Dang O, Schulz R. Religious beliefs and practices are associated with better mental health in family caregivers of patients with dementia: findings from the REACH study.  Am J Geriatr Psychiatry. 2007;  15 292-300
• 85 Hebert R S, Dang Q, Schulz R. 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. 2006;  9 683-693
• 86 Schulz R, Mendelssohn A B, Haley W E. et al . End-of-life care and the effects of bereavement on family caregivers of persons with dementia.  N Engl J Med. 2003;  349 1936-1942
• 87 Bosek M S, Lowry E, Lindeman D A. et al . Promoting a good death for persons with dementia in nursing facilities: family caregivers’ perspectives.  JONAS Healthc Law Ethics Regul. 2003;  5 34-41
• 88 Acton G J, Kang J. Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis.  Res Nurs Health. 2001;  24 349-360
• 89 Acton G J, Winter M A. Interventions for family members caring for an elder with dementia.  Ann Rev Nurs Res. 2002;  20 149-179
• 90 Burns R, Nichols L O, Martindale-Adams J. et al . Primary care interventions for dementia caregivers: 2-year outcomes from the REACH study.  Gerontologist. 2003;  43 547-555
• 91 Eisdorfer C, Czaja S J, Loewenstein D A. et al . The effect of family therapy and technology-based intervention on caregiver depression.  Gerontologist. 2003;  43 521-531
• 92 Inouye S K, Dyck C H, Alessi C A. et al . Clarifying confusion: the Confusion Assessment Method. A new method for detection of delirium.  Ann Int Med. 1990;  113 941-948
• 93 Reisberg van B, Sclan S G, Franssen E. et al . Dementia staging in chronic care populations.  Alzheimer Dis Assoc Disord. 1994;  8 (Suppl 1) S188-S205
• 94 Abbey J, Piller N, Bellis de A. et al . The Abbey Pain Scale: A 1-minute numerical indicator for people with end-stage.  Int J Palliat Nurs. 2004;  10 6-13
• 95 Lefebvre-Chapiro S. The Doloplus-Scale – evaluating pain in the elderly.  European J Palliat Care. 2001;  8 191-193
• 96 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
• 97 Morrison R, Ahronheim J, Morrison R. et al . Pain and discomfort associated with common hospital procedures and experiences.  J Pain Sympt Manage. 1998;  15 91-101
• 98 Basler H D, Hüger D, Kunz R Luckmann J. et al . Beurteilung von Schmerz bei Demenz (BESD).  Der Schmerz. 2006;  20 519-526
• 99 Aminoff B Z, Purits E, Noy S. et al . Measuring the suffering of end-stage dementia: reliability and validity of the Mini-Suffering State Examination.  Arch Gerontol Geriatr. 2004;  38 123-130
• 100 Volicer L, Hurley A C, Blasi Z V. Scales for evaluation of End-of-Life Care in Dementia.  Alzheimer Dis Assoc Disord. 2001;  15 194-200
• 101 Steen J T, Gijsberts M J, Knol D L. et al . Ratings of symptoms and comfort in dementia patients at the end of life: comparison of nurses and families.  Palliat Med. 2009;  23 317-324
• 102 Steen van der J T, Gijsberts M J, Muller M T. et al . Evaluations of end of life with dementia by families in Dutch and U. S. nursing homes.  Int Psychogeriatr. 2009;  21 321-329
• 103 Birch van der 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
• 104 Borasio G D, Heßler H J, Wiesing U. Patientenverfügungsgesetz: Umsetzung in der klinischen Praxis.  Dtsch Ärztebl. 2009;  106 A 1952-A 1957
• 105 Bayerisches Justizministerium .Vorsorge für Unfall, Krankheit und Alter durch Vollmacht, Patientenverfügung, Betreuungsverfügung. München; C. H. Beck Verlag 2009 11., überarbeitete Aufl
• 106 Volicer L, Hurley A C, Blasi Z V. Characteristics of dementia end-of-life care across care settings.  Am J Hosp Palliat Care. 2003;  20 191-200
• 107 Aminoff B Z. The new Israeli Law ”The Dying Patient” and Relief of Suffering Units.  Am J Hosp Palliat Care. 2007;  24 54-58
• 108 Volicer L, Hurley A. Hospice Care for Patients with Advanced Progressive Dementia. New York; Springer 1998
• 109 Bausewein C, Roller S, Voltz R. Leitfaden Palliativmedizin – Palliative Care. München; Elsevier 2007
• 110 Lyness J M. End-of-life care: issues relevant to the geriatric psychiatrist.  m J Geriatr Psychiatry. 2004;  12 457-472
• 111 Formiga F, Olmedo C, López-Soto A. et al . Dying in hospital of terminal heart failure or severe dementia: the circumstances associated with death and the opinions of caregivers.  Palliat Med. 2007;  21 35-40
• 112 Arcand M, Monette J, Monette M. 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 Dir Assoc. 2009;  10 50-55
• 113 Mast K R, Salama M, Silverman G K. et al . End-of-life content in treatment guidelines for life-limiting diseases.  J Palliat Med. 2004;  7 754-773
• 114 Sachs G A, Shega J W, Cox-Hayley D. Barriers to excellent end-of-life care for patients with dementia.  J Gen Intern Med. 2004;  19 1057-1063
• 115 Cole B E. The psychiatric management of end-of-life pain and associated psychiatric comorbidity.  Curr Pain Headache Rep. 2003;  7 89-97
• 116 Lloyd-Williams M, Payne S. Can multidisciplinary guidelines improve the palliation of symptoms in the terminal phase of dementia?.  Int J Palliat Nurs. 2002;  8 370-375
• 117 Silverberg E. Introducing the 3-A grief intervention model for dementia caregivers: acknowledge, assess and assist.  Omega. 2006 – 2007;  54 215-235