It’s the only cause of death in the top 10 in America that cannot be prevented, cured or slowed.
One in three seniors die with Alzheimer’s or another form of dementia and, according to medical experts and various advocacy organizations, by 2050 the cost of the disease will be as high as $1.1 trillion.
A new study published by researchers at Mount Sinai Hospital in New York details the rising financial and emotional burden that many families are coping with from dementia and Alzheimer’s disease. The authors revealed that it’s far more expensive than caring for those with illnesses like cancer or heart disease.
The study, which looked at patients within the last five years of their lives, revealed that the total cost of caring for someone with dementia costs 57 percent more than those with other illnesses.
And dementia patients and their families pay 81 percent more in out-of-pocket expenses than other patients.
This year alone, dementia will cost the nation $226 billion.
An estimated 5.3 million Americans of all ages currently have Alzheimer’s disease.
Of those, about 5.1 million are age 65 and older, and approximately 200,000 individuals are under age 65.
Further, although there are more whites living with Alzheimer’s and other dementias than people of any other racial or ethnic group in the U.S., older African Americans and Latinos are more likely than older whites to have Alzheimer’s disease and other dementias.
For many families, the cost of caring for a dementia patient often “consumed almost their entire household wealth,” Dr. Amy S. Kelley, a geriatrician at Icahn School of Medicine at Mt. Sinai in New York and the lead author of study that was published in the Annals of Internal Medicine, told the New York Times.
“It’s stunning that people who start out with the least end up with even less,” said Dr. Kenneth Covinsky, a geriatrician at the University of California in San Francisco.
“It’s scary,” he said. “And they haven’t even counted some of the costs, like the daughter who gave up time from work and is losing part of her retirement and her children’s college fund.”
Most families are unprepared for the financial burden of dementia, assuming Medicare will pick up most costs, said Dr. Diane E. Meier, a professor of geriatrics and palliative care at Mount Sinai Hospital.
“What patients and their families don’t realize is that they are on their own,” she said.
Everything gets complicated when a person has dementia, Dr. Christine K. Cassel, a geriatrician and chief executive of the National Quality Forum, said.
Cassel described a familiar situation to the New York Times, noting that if a dementia patient in a nursing home gets a fever, the staff members say, “I can’t handle it” and call 911, she said.
The patient lands in the hospital. There, patients with dementia tend to have complications – they get delirious and confused, fall out of bed and break a bone, or they choke on their food. Medical costs soar.
When examining the burden for individuals who receive Medicare, the study revealed that the average total cost of care for a person with dementia over five years was $287,038. For a patient who died of heart disease it was $175,136.
For a cancer patient it was $173,383. Medicare paid almost the same amount for patients with each of those diseases – close to $100,000 – but dementia patients had far more expenses that were not covered.
On average, the out-of-pocket cost for a patient with dementia was $61,522 – more than 80 percent higher than the cost for someone with heart disease or cancer.
The reason is that dementia patients need caregivers to watch them, help with basic activities like eating, dressing and bathing, and provide constant supervision to make sure they do not wander off or harm themselves. None of those costs were covered by Medicare.
“People with dementia need greater assistance because the disease is characterized by a progressive loss of ability to take care of yourself, to dress yourself, bathe yourself, feed yourself, or to have judgment to be safe,” Meier said.
“And what that means is that you can’t leave a dementia patient alone. So, families handle that either by having someone in the family give up their other responsibilities, give up their work in order to be with the person who has dementia, or by paying out of pocket to pay someone, an aide or a companion, to be with their loved one with dementia,” she said.
“Either way, there’s a huge cost to the families that is not covered by Medicare.”