Study Pushes Better End of Life Care for Dementia

Patients with end-stage dementia do not receive quality care, study shows

A new Harvard Medical School study recommends that patients with advanced dementia be given the same quality care as patients with terminal illnesses such as cancer or heart failure.

The study, led by Associate Professor of Medicine Susan L. Mitchell, followed 323 patients with advanced dementia in 22 different nursing homes for 18 months.

Through interviews with the patients, their families, and the nursing homes’ caretakers, the researchers found that patients with end-stage dementia did not receive an ideal quality of care for their condition.

“Infections and eating problems were hallmark for patients [with advanced dementia],” said Mitchell, who is also a senior scientist at Hebrew SeniorLife (HSL), a Harvard Medical School affiliate. “Far too many patients received stressing symptoms, and the care they receive at the end of life has not been optimal, in part because they have not been recognized as [having] a terminal illness.”

While previous studies have focused only on the causes and medicinal treatments of dementia in its earlier stages, Mitchell’s study is the first to investigate dementia at its end stage, referred to as “stage 7.”

According to the Global Deterioration Scale, stage 7 is the stage of dementia characterized by not only profound memory deficits but also the inability to recognize family members, communicate verbally, walk, or feed oneself.

“When someone has advanced cancer, if they have any discomfort, we’ve no hesitation about treating them or doing things to tend to their comfort. They become the utmost priority in our mind,” said Sharon Inouye, professor of medicine and director of the Aging Brain Center at HSL.

“But one of the most painful things to me was how often these patients [with advanced dementia] were allowed to be uncomfortable or allowed to have distressing symptoms,” Inouye said.

As a result, Mitchell’s paper—published yesterday in the New England Journal of Medicine—recommends expert management for palliative care in addition to awareness of the seriousness of the disease at the end stage.

“Our study calls for improved communication with patients and family members so they understand what to expect in the final stages [of dementia] to make decisions of care with their patients,” Mitchell said.

Inouye added that the next step should must involve “trying to give appropriate care in the appropriate setting.”

“To me,” she said, “the take-home message [is] the realization that patients with advanced dementia really have a terminal illness.”