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Should advanced dementia be considered a terminal illness?


dementia terminal illnessAdvanced dementia has often been treated as an amalgamation of symptoms in the aging, rather than a deadly illness in itself. A new study, published online today in The New England Journal of Medicine, proposes that it may be beneficial—for patients and caretakers alike—to take the latter approach.

"As the end of life approaches, the pattern in which patients with advanced dementia experience distressing symptoms is similar to patients dying of more commonly recognized terminal conditions, such as cancer," Susan Mitchell, a senior scientist at the Institute for Aging Research, part of Hebrew SeniorLife, an affiliate of Harvard Medical School in Boston, and lead paper author, said in a prepared statement. Common symptoms for patients include pain, agitation and shortness of breath; the most common immediate causes of death are from pneumonia, fever or eating problems, the authors report.

"Patients in nursing homes who have dementia are at risk for undertreatment of pain and treatment with burdensome and possibly nonbeneficial interventions," wrote Greg Sachs, of the Indiana University Center for Aging Research, in an editorial accompanying the report.

The study followed 323 patients with advanced dementia in 22 different nursing homes for 18 months. By the end of the study, more than half (54.8 percent) had died, and of the deceased, about 40 percent of patients had been hospitalized, put on a feeding tube or experienced at least one other so-called "burdensome intervention" in their last few months of life.

"Many of the patients in our study underwent interventions of questionable benefit in the last three months of life," Mitchell said. However, care changed when caretakers understood the risk of death and likely outcome of interventions. "When [patients'] health-care proxies were aware of the poor prognosis and expected clinical complications in advanced dementia, patients were less likely to undergo these interventions and more likely to receive palliative care in their final days of life," she added.

The recognition of dementia as a terminal disease may encourage caretakers to alter end-of-life care to improving comfort, rather than extending life. As Sachs notes in his editorial, advanced dementia patients who have hospice care have "milder psychiatric symptoms" along with fewer hospital admissions.

More than five million people in the U.S. have dementia, a condition that includes problems with memory, communication and reasoning, of which Alzheimer's disease is the most widely recognized.

"A better understanding of the clinical trajectory of end-stage dementia is a critical step toward improving the care of patients with this condition," Mitchell said.

Image courtesy of iStockphoto/JJRD

The views expressed are those of the author and are not necessarily those of Scientific American.

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