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Alzheimer's Disease Health Center

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Late-Dementia Suffering Often Unnecessary

Death Rate for Advanced Dementia Similar to Some End-Stage Cancers

Pain, Shortness of Breath, Agitation Also Common

The Harvard study included 323 residents with advanced dementia living in 22 Boston-area nursing homes. Researchers followed the patients for up to 18 months and surveyed family members about their understanding of their loved one’s prognosis and expected complications.

All the patients were unable to walk on their own, incontinent, and had severely impaired verbal and memory skills. They no longer recognized close family members and could speak no more than five words.

During the 18-month study, 55% of the residents died.

Among the major findings:

  • Patients who developed pneumonia, fever, or problems eating by mouth had a high likelihood of dying within six months.
  • Pain, shortness of breath, or agitation occurred in 40% to 50% of patients, and these symptoms were more common as patients got closer to death.
  • About a third said a treating physician had talked to them about their loved one’s clinical course and fewer than one in five said a doctor talked to them about the patient’s prognosis.

Too Few Patients Getting ‘Comfort’ Care

Geriatrician Laurel Coleman, MD, of the Maine Medical Center and the Beacon Hospice tells WebMD that the study will help physicians and family members understand what to expect.

Coleman is a member of the Alzheimer’s Association national board of directors.

“The fact that the study is in such a prominent journal means that it will reach a wide audience,” she says. “That is a very good thing. These are conversations that families want to have. Families want to know how to limit burden and discomfort.”

Mitchell and colleagues found that family members who understood their loved one’s poor prognosis were much less likely to agree to medical interventions designed to prolong life.

Economics help explain why so many advanced dementia patients get these medical treatments, Sachs says.

When a patient gets sick with pneumonia, fever, or some other illness, they become more difficult and expensive to care for.

“The economic incentives pretty much all line up in favor of transferring patients from the nursing home to hospitals,” he says. “Things are really set up to favor burdensome, aggressive treatment and not enough patients are getting treatments that focus on making them more comfortable at the end of life.”

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