The clinical course of advanced dementia.

Full 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. 2009 Massachusetts Medical Society

Author information

Author/s: Mitchell, Susan L (SL); Teno, Joan M (JM); Kiely, Dan K (DK); Shaffer, Michele L (ML); Jones, Richard N (RN); Prigerson, Holly G (HG); Volicer, Ladislav (L); Givens, Jane L (JL); Hamel, Mary Beth (MB);

Affiliation: Hebrew SeniorLife Institute for Aging Research, Boston, MA 02131, USA. smitchell(-atsign-)hrca.harvard.edu

Grants: K24 AG033640 (Agency:NIA NIH HHS) ; R01 AG024091 (Agency:NIA NIH HHS)

Journal and publication information

Publication Type: Journal Article; Multicenter Study; Research Support, N.I.H., Extramural

Journal: The New England journal of medicine (N Engl J Med), published in United States. (Language: eng)

Reference: 2009-Oct; vol 361 (issue 16) : pp 1529-38

Dates: Created 2009/10/15; Completed 2009/10/26;

PMID: 19828530, status: MEDLINE (last retrieval date: 10/26/2009, IMS Date: )

Sourced from the National Library of Medicine. Abstract text and other information may be subject to copyright.

Comments and Corrections

CommentIn: N Engl J Med. 2009 Oct 15;361(16):1595-6. (PMID: 19828537)

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