title: Dying with advanced dementia in the nursing home.
abstract: BACKGROUND
  Nursing homes are important providers of end-of-life care to persons with advanced dementia.
  
  
  METHODS
  We used data from the Minimum Data Set (June 1, 1994, to December 31, 1997) to identify persons 65 years and older who died with advanced dementia (n = 1609) and terminal cancer (n = 883) within 1 year of admission to any New York State nursing home. Variables from the Minimum Data Set assessment completed within 120 days of death were used to describe and compare the end-of-life experiences of these 2 groups.
  
  
  RESULTS
  At nursing home admission, only 1.1% of residents with advanced dementia were perceived to have a life expectancy of less than 6 months; however, 71.0% died within that period. Before death, 55.1% of demented residents had a do-not-resuscitate order, and 1.4% had a do-not-hospitalize order. Nonpalliative interventions were common among residents dying with advanced dementia: tube feeding, 25.0%; laboratory tests, 49.2%; restraints, 11.2%; and intravenous therapy, 10.1%. Residents with dementia were less likely than those with cancer to have directives limiting care but were more likely to experience burdensome interventions: do-not-resuscitate order (adjusted odds ratio [OR], 0.12; 95% confidence interval [CI], 0.09-0.16), do-not-hospitalize order (adjusted OR, 0.33; 95% CI, 0.16-0.66), tube feeding (adjusted OR, 2.21; 95% CI, 1.51-3.23), laboratory tests (adjusted OR, 2.53; 95% CI, 2.01-3.18), and restraints (adjusted OR, 1.79; 95% CI, 1.23-2.61). Distressing conditions common in advanced dementia included pressure ulcers (14.7%), constipation (13.7%), pain (11.5%), and shortness of breath (8.2%).
  
  
  CONCLUSIONS
  Nursing home residents dying with advanced dementia are not perceived as having a terminal condition, and most do not receive optimal palliative care. Management and educational strategies are needed to improve end-of-life care in advanced dementia.
authors.affiliation: Research and Training Institute, Hebrew Rehabilitation Center for Aged, Boston, MA 02131, USA. smitchell@mail.hrca.harvard.edu
authors.forename: Susan L
authors.initials: SL
authors.lastname: Mitchell
authors.forename: Dan K
authors.initials: DK
authors.lastname: Kiely
authors.forename: Mary Beth
authors.initials: MB
authors.lastname: Hamel
mesh_terms: D016223:Advance Directives; D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D014150:Antipsychotic Agents / Q000627:therapeutic use; D003657:Decision Making; D003704:Dementia / Q000401:mortality* / Q000523:psychology / Q000628:therapy*; D005260:Female; D006707:Homes for the Aged; D006801:Humans; D008297:Male; D015999:Multivariate Analysis; D009369:Neoplasms / Q000401:mortality / Q000523:psychology / Q000628:therapy; D009518:New York / Q000453:epidemiology; D009735:Nursing Homes; D010166:Palliative Care; D010343:Patient Admission; D015995:Prevalence; D013811:Psychotherapeutic Processes; D016019:Survival Analysis; D013727:Terminal Care
chemical_list: D014150:Antipsychotic Agents