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.

Many of the nursing home residents experienced distressing symptoms such as shortness of breath (46 percent) and pain (39 percent).

During the last three months of life, more than 40 percent of those with end-stage dementia underwent at least one serious medical intervention -- hospitalization, emergency department visit, IV nutrition or tube feeding.

But, said Mitchell, "When family members understood the clinical complications and prognosis, their loved ones were less likely to get burdensome interventions."

She said only 27 percent of those whose loved ones understood that end-stage dementia was terminal and that complications might occur -- such as fever, pneumonia or an eating problem -- underwent a burdensome medical intervention in their last three months of life. That compared to 73 percent of those whose families didn't understand that their loved one was dying or the medical complications that might ensue.

Mitchell believes that communication between families and care providers needs to improve. She also believes that high-quality palliative care and hospice should be available to nursing home residents with dementia, in the same way that they're available to other people with terminal illnesses, such as cancer.

However, according to an accompanying editorial in the same issue of the journal, people with advanced dementia are currently much less likely than someone with cancer to be referred to hospice.

"Patients in nursing homes who have dementia are at risk for undertreatment of pain and for treatment with burdensome and possibly non-beneficial interventions, including tube feeding," wrote Dr. Greg Sachs, the author of the editorial. "Patients with advanced dementia do not need to have another serious illness to qualify for hospice care -- dementia comes with a high burden of symptoms that warrant a palliative care approach," he noted.

"Families need to know that people with advanced dementia are close to death in the same way that cancer patients are, and they need to think about palliative and hospice care," said Sachs, who is a professor and director of the division of general internal medicine and geriatrics at Indiana University School of Medicine and an investigator at the Regenstrief Institute.

Ideally, he said, families should discuss end-of-life care early in the dementia diagnosis, so that everyone can participate in the discussion. And, it's best to have the decision made ahead of time, so you don't have to decide in a crisis situation what procedures your loved one would have wanted.

More information

To read more about what to expect when someone with dementia is nearing the end of life, go to the U.S. National Institute on Aging.

SOURCES: Susan L. Mitchell, M.D., M.P.H., associate professor, medicine, Harvard Medical School, and senior scientist, Hebrew Senior Life Institute for Aging Research, Boston; Greg A. Sachs, M.D., professor and director, division of general internal medicine and geriatrics, Indiana University School of Medicine, and investigator, Regenstrief Institute, Indianapolis; Oct. 15, 2009, New England Journal of Medicine

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