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Late-Dementia Suffering Often Unnecessary

Death Rate for Advanced Dementia Similar to Some End-Stage Cancers
By
WebMD Health News
Reviewed by Louise Chang, MD

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.

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