Advanced dementia viewed as terminal illness

NEW YORK (Reuters Health) - Advanced dementia is a terminal illness and should be viewed as such, researchers conclude in a report released Wednesday.

Infections and eating problems are common and often herald the final states of life for these patients. Unfortunately, many of patients with advanced dementia suffer through burdensome medical interventions of questionable benefit as they approach the end-of-life.

What they really need is hospice or "comfort" care, Dr. Susan L. Mitchell from the Hebrew Senior Life Institute for Aging Research, Boston, and colleagues point out in The New England Journal of Medicine this week.

"Dementia is a leading cause of death in the US affecting over 5 million Americans, with projections to more than triple by 2050. Surprisingly, little is known about how persons with dementia die," Mitchell told Reuters Health.

Mitchell and colleagues followed the course of 323 persons in 22 Boston area nursing homes with advanced dementia. "These patients had such profound memory deficits that they could not recognize their own family members, spoke fewer than 6 words, were bed-bound, totally dependent on others, and incontinent," Mitchell explained.

Over 18 months, more than half of them died (55 percent).

In addition, 53 percent developed a fever at least once, 41 percent caught pneumonia and 86 percent developed eating problems. "Distressing symptoms," including breathing difficulties and pain, were also common.

Very few of these patients had "sentinel events," such as stroke or heart attack; rather, most patients died from infections, eating problems and other conditions related to their underlying dementia, Dr. Greg A. Sachs from the Indiana University Center for Aging Research in Indianapolis, who was not involved in the study, points out in a commentary published with the study.

Within 90 days of death, nearly 41 percent of these nursing home residents with advanced dementia had at least one "burdensome" intervention such as placement of a feeding tube. However, when family members were aware of the poor prognosis, patients were less likely to have these interventions in the final days of life.

Family members, Mitchell said, need to know what to expect for their loved one with advanced dementia and that the prognosis is "poor" so that appropriate advance care plans can be made.

Advanced dementia patients, she added, need "greater access" to hospice care services.

Sachs agrees. Doctors, patients' families, and nursing home staff "need to recognize and treat advanced dementia as a terminal illness requiring palliative care," Sachs wrote.

Palliative or "comfort," care is aimed at easing a person's symptoms, for example pain or difficulty breathing, but is not intended to cure an illness or halt its progress.

SOURCE: The New England Journal of Medicine, October 15, 2009.