Families Need to Know When Dementia Becomes Terminal

Oct. 15 -- WEDNESDAY, Oct. 14 (HealthDay News) -- Many people see end-stage dementia as affecting only the mind, but a new study shows that the disease's effects are far-reaching and eventually fatal.

The misconception by family members that end-stage dementia is not a terminal condition can have negative consequences for the patient, the researchers say. That's because concerned loved ones often order aggressive, sometimes burdensome interventions such as feeding tubes that will not improve patient outcomes.

"Dementia is a leading cause of death in the U.S., and yet surprisingly little is known about how these patients die," noted the study's lead author, Dr. Susan Mitchell, an associate professor of medicine at Harvard Medical School and a senior scientist at the Hebrew Senior Life Institute for Aging Research in Boston.

"When families are more prepared, their loved ones get less burdensome interventions," said Mitchell, whose team published their findings in the Oct. 15 issue of the New England Journal of Medicine.

Dementia currently affects about 5 million Americans, but that number is expected to triple in the next 40 years, according to Mitchell.

Previous studies have suggested that those with advanced dementia often aren't thought to have a terminal illness, and thus may receive less than optimal end-of-life care, according to background information in the study.

To get a better understanding of what goes on during the end of life for those with dementia, and hopefully to improve that care, the researchers conducted an 18-month study in 22 nursing homes. A total of 323 residents with advanced dementia were included in the study.

The people with end-stage dementia included in this study couldn't recognize their family members, couldn't speak six words, were incontinent and were totally dependent on other people for the most basic care, according to Mitchell.

During the study period, 55 percent of those enrolled in the study died. The most common complication associated with the death was pneumonia, followed by fever (not caused by pneumonia), and then eating problems.