title: The clinical course of advanced dementia.
abstract: BACKGROUND
  Dementia is a leading cause of death in the United States but is underrecognized as a terminal illness. The clinical course of nursing home residents with advanced dementia has not been well described.
  
  
  METHODS
  We followed 323 nursing home residents with advanced dementia and their health care proxies for 18 months in 22 nursing homes. Data were collected to characterize the residents' survival, clinical complications, symptoms, and treatments and to determine the proxies' understanding of the residents' prognosis and the clinical complications expected in patients with advanced dementia.
  
  
  RESULTS
  Over a period of 18 months, 54.8% of the residents died. The probability of pneumonia was 41.1%; a febrile episode, 52.6%; and an eating problem, 85.8%. After adjustment for age, sex, and disease duration, the 6-month mortality rate for residents who had pneumonia was 46.7%; a febrile episode, 44.5%; and an eating problem, 38.6%. Distressing symptoms, including dyspnea (46.0%) and pain (39.1%), were common. In the last 3 months of life, 40.7% of residents underwent at least one burdensome intervention (hospitalization, emergency room visit, parenteral therapy, or tube feeding). Residents whose proxies had an understanding of the poor prognosis and clinical complications expected in advanced dementia were much less likely to have burdensome interventions in the last 3 months of life than were residents whose proxies did not have this understanding (adjusted odds ratio, 0.12; 95% confidence interval, 0.04 to 0.37).
  
  
  CONCLUSIONS
  Pneumonia, febrile episodes, and eating problems are frequent complications in patients with advanced dementia, and these complications are associated with high 6-month mortality rates. Distressing symptoms and burdensome interventions are also common among such patients. Patients with health care proxies who have an understanding of the prognosis and clinical course are likely to receive less aggressive care near the end of life.
authors.affiliation: Hebrew SeniorLife Institute for Aging Research, Boston, MA 02131, USA. smitchell@hrca.harvard.edu
authors.forename: Susan L
authors.initials: SL
authors.lastname: Mitchell
authors.forename: Joan M
authors.initials: JM
authors.lastname: Teno
authors.forename: Dan K
authors.initials: DK
authors.lastname: Kiely
authors.forename: Michele L
authors.initials: ML
authors.lastname: Shaffer
authors.forename: Richard N
authors.initials: RN
authors.lastname: Jones
authors.forename: Holly G
authors.initials: HG
authors.lastname: Prigerson
authors.forename: Ladislav
authors.initials: L
authors.lastname: Volicer
authors.forename: Jane L
authors.initials: JL
authors.lastname: Givens
authors.forename: Mary Beth
authors.initials: MB
authors.lastname: Hamel
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000150:complications / Q000401:mortality; D003704:Dementia / Q000150:complications* / Q000401:mortality / Q000523:psychology; D001068:Feeding and Eating Disorders / Q000453:epidemiology / Q000209:etiology; D005260:Female; D005334:Fever / Q000453:epidemiology / Q000209:etiology; D006760:Hospitalization / Q000706:statistics & numerical data; D006801:Humans; D015994:Incidence; D008297:Male; D009735:Nursing Homes; D010288:Parenteral Nutrition / Q000706:statistics & numerical data; D011014:Pneumonia / Q000453:epidemiology / Q000209:etiology; D011379:Prognosis; D011446:Prospective Studies; D019727:Proxy; D016019:Survival Analysis; D013727:Terminal Care