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Clinical Course of Advanced Dementia

As we suspected: Advanced dementia is a terminal illness.

To describe the clinical course of patients with advanced dementia, researchers conducted this prospective study of 323 patients (mean age, 85) who resided in 22 nursing homes in or near Boston. All patients had advanced dementia with profound cognitive deficits (e.g., inability to recognize family members, minimal verbal communication, total functional dependence), and all had healthcare proxies (usually the patients' children).

During 18 months of observation, 41% of patients developed pneumonia, 53% experienced febrile episodes (excluding pneumonia), 86% had eating problems (e.g., reduced intake, dysphagia), and 55% died. Pain, dyspnea, pressure ulcers, and aspiration were common. Among patients who died, 41% underwent what investigators called "burdensome interventions" (e.g., hospitalization, tube feedings, parenteral therapy) during the 3 months before death. About a quarter of patients were referred for hospice care. Only 18% of healthcare proxies reported that they had received prognostic information from physicians.

Comment: These researchers quantitate what we already know: Advanced dementia is a terminal illness. The authors imply that care provided to many nursing home patients with advanced dementia is overly burdensome and aggressive. The observation that few healthcare proxies reported that they had received prognostic information is not surprising: In many nursing home settings, family members are not given the opportunity to develop continuous relationships with trusted clinicians who are experienced in caring for patients with advanced dementia.

— Allan S. Brett, MD

Published in Journal Watch General Medicine October 14, 2009

Citation(s):

Mitchell SL et al. The clinical course of advanced dementia. N Engl J Med 2009 Oct 15; 361:1529.

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Reader Remarks:

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  G M LUCAS, 16 Oct 2009 3:08 PM EST
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