Dementia is a terminal illness, Boston study says

When the study began, the dementia patients had profound cognitive deficits. They couldn't recognize family members, they spoke fewer than six words, they were incontinent, and they couldn't get out of bed.

Over 18 months, a little more than half of them died, a death rate similar to metastatic breast cancer. In addition to frequent infections and trouble eating, one in three had shortness of breath and one in four was in pain.

In the last 90 days of their lives, four out of 10 went through "burdensome interventions," which the researchers defined as hospitalizations or tube feedings with questionable benefit. But whether a patient was brought to a hospital or fed through a tube depended on how much their family members understood about their condition, including the likelihood of pneumonia, fever, and eating problems.

About a quarter of family members who said they thought their loved one was likely to die within six months and understood the common complications allowed such an intervention. But about three-quarters of family members who said they did not understand the prognosis or the complications opted for that kind of intervention.

In an editorial also appearing in the New England Journal, Dr. Greg Sachs of the Indiana University School of Medicine said hospice and palliative care are not used often enough for dementia patients.

"Clinicians, patients' families, and nursing home staff need to recognize and treat advanced dementia as a terminal illness requiring palliative care," he writes. "Patients with advanced dementia do not need to have another serious illness to qualify for hospice care."