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Quality of life at the end of life

Dementia To Test U.S. Health System, Experts Warn

Seriously ill patients suffering from dementia will test the strength and resilience of the American health care system, experts warn.

It is estimated that every 67 seconds, someone in the U.S. becomes diagnosed with dementia. The population is expected to increase dramatically as millions of baby boomers age.

“This is an important population. In 2000, it was 4.5 million, by 2050, it’s estimated 16 million Americans will have dementia. Median survival from diagnosis is three to six years,” said Dr. Joan Teno, associate director of the Center for Gerontology and Health Care Research at Brown University Medical School, who addressed a crowd at the University of Chicago’s MacLean Center for Clinical Medical Ethics this month.

Dr. Joan M. Teno

Dr. Joan M. Teno

“A lot of what dementia involves is custodial care, it’s a taxing thing, we call it the 36-hour day, because of how much caregivers have to do in caring for this population,” Teno said.

Decline occurs rapidly among patients with severe symptoms, because they are often bed-bound, have difficulty swallowing and eating, and suffer other serious complications, like painful ulcers.

It is also common, Teno said, for patients suffering from severe dementia to transition to multiple  care settings in the last years of life and receive unwanted, often costly, medical interventions.

“I think that this pattern of health care, where we are always moving patients in-and-out of the hospital is potentially creating harm,” Teno said. “It leads to higher rates of getting feeding tubes and higher rates of late referral to hospice.”

Hospice care is designed to comfort dying patients in their last months of life.

Exploring costs of dementia

Comparison of a normal aged brain (left) and the brain of a person with Alzheimer's (right). Differential characteristics are pointed out. Courtesy WikiMedia Commons.

Comparison of a normal aged brain (left) and the brain of a person with Alzheimer’s (right). Differential characteristics are pointed out. Courtesy WikiMedia Commons.

One of the most comprehensive studies on the costs of dementia determined that the debilitating and progressive disease is more expensive than heart disease and cancer, costing society and families around $200 billion a year. The costs of dementia-related care and the number of people with it will more than double by 2040, according to a widely circulated 2013 study published in The New England Journal of Medicine.

Researchers, supported by the RAND Corporation, determined that dementia leads to total annual costs of $41,000 to $56,000 per case in the U.S., totaling up to $215 billion in 2010.

More troubling were calculations that estimate that the aging population will lead to an increase of almost 80 percent in total costs by 2040.

The National Institutes of Health (NIH) defines dementia as the loss of cognitive functioning— thinking, remembering and reasoning— and behavioral abilities to such an extent that it interferes with a person’s daily life and activities. Many conditions and diseases cause dementia, but the most common cause in older adults is Alzheimer’s disease.

Most dementia-related costs stem from long-term institutional and home-based care, not medical care, partly because there is no cure. Nursing home, formal and informal care account for up to 80 percent of the costs.