Advanced Dementia: Managing the Burden

Paula Tishel, right, cares for her mother Gertrude Buckley, who has advanced dementia. Doctors and informed family members are shifting their focus from aggressive treatment to palliative care for such patients, in part due to a new study that finds advanced dementia carries the same prognosis as terminal cancer.
Gertrude Buckley was a beauty with brains - one of Milwaukee's first female real estate brokers. But around her 80th birthday, her family began noticing odd behavior.

"Her checkbook was a mess. She wrote checks for very much the wrong amount," said Paula Tishel, Buckley's daughter. "She completely denied that she had any memory loss. 'That's ridiculous,' is what she would say."

Buckley is now 93 years old, with advanced dementia. A controversial new study finds her illness is as deadly as cancer and, therefore, its victims should be offered hospice care to spare them from futile and frightening procedures, reports CBS News medical correspondent Jon LaPook.

"Far too many patients experienced distressing symptoms like pain and shortness of breath and received burdensome interventions of questionable benefit in the final days of life," Dr. Susan Mitchell said.

But how do you know when someone is in the final days of life?

Researchers found patients with late-stage dementia - those who speak fewer than six words at a time and are completely dependent - lived on average only 16 months. And about 40 percent were in pain.

Advanced dementia has the same poor prognosis as terminal cancer. But only about 18 percent of family members say this has been explained to them by doctors.

Those who did were far less likely to allow extraordinary measures like feeding tubes and emergency room visits.

"If you're someone who doesn't understand who is doing this or why they're doing it, it's going to feel almost like an assault," said Dr. Greg Sachs of the Indiana University School of Medicine's Center for Aging Research, said of the medical procedures conducted on dementia patients.

Sachs watched his own grandmother suffer through aggressive treatments right up until she died.

He's among a growing number of doctors who advocate hospice care to comfort patients such as Gertrude Buckley. Medicare has covered hospice care since the 1990s but is used on only one in 10 patients with advanced dementia.

"Certainly I'm not advocating sending grandma off on an ice floe," Sachs said. "It's a misconception people either get aggressive care or they get neglected or they get put to death. People actually have a right to aggressive palliative care. They need someone who is responsive to their pain."

Because Buckley left no advanced care instructions, her daughter has been left guessing about her mother's wishes.

"I know that she wouldn't want to be in pain, nobody would. I don't want her to be frightened. I opted not to do anything that was uncomfortable to her but just to make sure that she was really well taken care of and stimulated and comfortable."

Experts stress the goal of hospice care for patients with advanced dementia is hot to hasten their death, it's to make their last days as comfortable as possible.

  • Jonathan LaPook

    Dr. Jonathan LaPook is the chief medical correspondent for the CBS Evening News. Follow him on Twitter at @DrLaPook