Americans spend at least $157 billion a year on dementia care, researchers reported today — more than on heart disease or cancer, with most of the money going to pay for custodial, non-medical expenses. And the costs are expected to rise dramatically as the U.S. population ages.
Researchers from the RAND Corporation and the University of Michigan looked at out-of-pocket, Medicare, nursing home and home health care spending as measured by a nationally representative survey of 856 Americans with dementia.
Spending on dementia — a loose group of mental conditions that includes Alzheimer's disease averaged from $41,000 to $56,000 per patient per year. Most of the money went toward what the study, published in today's New England Journal of Medicine, called "non-medical" care, such as providing quality of life support, housing and help with the tasks of daily living, such as getting dressed and preparing meals.
"People with dementia do not get much more additional health care services than other people," said Michael Hurd, an economist at RAND and the study's lead author, in a release. "The real drivers of the cost are for non-medical care."
"You have to watch body language, facial expression, and interact with a certain demeanor when caring for patients with Alzheimer's," said Diane Marcello, who has been the administrator at Sunnyside Nursing Home and Assisted Living in Sarasota, Fla., since 1999.
"Unlike some other diseases, part of the expense with Alzheimer's is you have to have 24-7 care, and you have to have people who are paying attention at a level where it's person to person, not a monitoring device scenario," said Stacy Haller, president and CEO of the BrightFocus Foundation, a nonprofit organization funding research to stop brain and eye diseases, including Alzheimer's, that was not involved in the study. "Just the people aspect of what's required to support someone with Alzheimer's is much more consequential than some other diseases," Haller said.
More than 5 million Americans are living with Alzheimer's, according to the Alzheimer's Association, which in March released a report that looked at Alzheimer's financial toll on families. More than 15 million people were Alzheimer's caregivers in 2012, according to the report, and roughly 15 percent live more than an hour away from the person with Alzheimer's. Long-distance caregivers, the report found, incurred higher out-of-pocket costs than those who were local. Overall, the Alzheimer's Association report tallied the cost of care associated with Alzheimer's disease at about $203 billion, which lines up with the number from the NEJM study.
And those numbers are only rising. Experts expect the number of people with Alzheimer's in the United States to triple by 2050.
For the families of people with Alzheimer's, the financial burden can cause high levels of emotional stress and depression, said Diane Bovenkamp, PhD, a science communications specialist with BrightFocus. "That creates the potential for them to be a secondary patient, because it can have an impact on their health, their employment, their financial security," she said.