Late-Dementia Suffering Often Unnecessary

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

Medically Reviewed by Louise Chang, MD on October 14, 2009
From the WebMD Archives

Oct. 14, 2009 -- Patients with advanced Alzheimer’s disease or other age-related dementias often suffer unnecessarily near the end of life probably because their condition is not recognized as fatal, researchers say.

The death rate among patients with advanced dementia in a newly published study was similar to that of patients with end-stage breast cancer or heart disease, lead researcher Susan L. Mitchell, MD, of Harvard Medical School’s Institute for Aging Research, tells WebMD.

One in four patients died within six months of recruitment, and slightly more than half died within 18 months.

Yet in their last months of life, Mitchell says far too many patients received burdensome medical treatments and far too few received adequate palliative treatments for pain and other common symptoms, such as shortness of breath and agitation.

The study appears in the April 15 issue of the New England Journal of Medicine.

Pneumonia, Fever, Eating Problems Common

Pneumonia, fever, and an eating problem were the most common complications in the final months of life, and 41% of patients had at least one aggressive treatment including hospitalization, a visit to the ER, intravenous treatment, or a feeding tube.

“There is a lack of recognition that dementia is a terminal illness and this has a big impact on the quality of care patients receive,” Mitchell says. “We found that a high percentage of patients had distressing symptoms toward the end of life.”

More than 5 million Americans suffer from Alzheimer’s dementia, and this figure is expected to triple over the next four decades as baby boomers reach old age. Alzheimer’s is the most common cause of dementia.

In the late stages of the disease, patients are often bedridden and can no longer communicate their needs, recognize close family members, or perform basic functions like feeding themselves and going to the bathroom.

In an editorial published with the study, geriatrician and dementia researcher Greg A. Sachs, MD, of the Indiana University Center for Aging Research, recalls his maternal grandmother’s struggle with advanced Alzheimer’s disease.

Her final months in a nursing home included repeated courses of antibiotics for infections and restraints to control her agitation. Her condition so distressed Sachs’ mother that she stopped taking her children when she visited.

“My grandmother had little in the way of either comfort or company toward the end,” he writes, adding that 30 years later, end-of-life care for dementia “doesn’t look all that different from the treatment she received.”

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.”

Show Sources


Mitchell, S.L., The New England Journal of Medicine, Oct. 15, 2009; vol 36: pp 1529-1536.

Alzheimer’s Association: “2009 Alzheimer’s Disease Facts and Figures.” 

Susan L. Mitchell, MD, MPH, senior scientist, Institute for Aging Research, Hebrew SeniorLife, Harvard Medical School, Boston.

Greg A. Sachs, MD, professor of medicine, director, division of general internal medicine and geriatrics, Indiana University School of Medicine; investigator, Regenstrief Institute, Indianapolis.

Laurel Coleman, MD, Maine Medical Center Geriatrics Division; medical director, Beacon Hospice; Alzheimer’s Association National Board of Directors.

News release, New England Journal of Medicine.

News release, Indiana University School of Medicine.

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