Three diseases, leading killers of Americans, often involve long periods of decline before death. Two of them – heart disease and cancer – usually require expensive drugs, surgeries and hospitalizations. The third, dementia, has no effective treatments to slow its course.
So when a group of researchers asked which of these diseases involved the greatest health care costs in the last five years of life, the answer they found might seem surprising. The most expensive, by far, was dementia.
The study looked at patients on Medicare. The average total cost of care for a person with dementia during those 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 many 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.
For many families, the cost of caring for a dementia patient often “consumed almost their entire household wealth,” said Dr. Amy Kelley, a geriatrician at Icahn School of Medicine at Mount Sinai in New York and the lead author of the paper published on Monday in the Annals of Internal Medicine.
“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. 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.”
Dr. Diane Meier, a professor of geriatrics and palliative care at Mount Sinai Hospital, said most families are unprepared for the financial burden of dementia, assuming Medicare will pick up most costs.
“What patients and their families don’t realize is that they are on their own,” Meier said.
Everything gets complicated when a person has dementia, noted Dr. Christine Cassel, a geriatrician and chief executive of the National Quality Forum.
She described a familiar situation: 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.
To obtain cost estimates, Kelley and her colleagues used data from the Health and Retirement Survey, a federally funded study that conducts detailed interviews every two years with a nationally representative sample of older people, getting an average response rate of 86 percent. It collects data on participants’ incomes, health and needs for care. It includes data on subjects’ cognitive functioning and the likelihood that they are demented, and on their total out-of-pocket spending.
The survey links to the Medicare database, which provides data on participants’ total medical costs, and to the National Death Index. After people die, their families are questioned again about health care spending, including spending on nursing homes and home health care.
To estimate the costs of unpaid care — a daughter who leaves her job to care for a mother with Alzheimer’s disease, for example — the researchers used $20 an hour, the average for a home health care aide.
The reason for the big disparities in out-of-pocket costs for the three diseases, Kelley said, is that Medicare covers discrete medical services like office visits and acute care such as hospitalization and surgery. Expenses for cancer patients and heart patients tend to be of that sort. They often do not need full-time home or nursing home care until the very end of their life, if at all, so do not have that continuing cost.
Dementia patients, in contrast, need constant care for years. They may not be sick enough for a nursing home, but cannot be left alone.
When they are sick enough for a nursing home, that cost is not covered by health insurance. More than half of patients with dementia — and three-quarters of those from racial minorities — spend down, using savings to pay for the nursing home until nothing is left. Then Medicaid, the federal-state program for low-income people, takes over.
“It’s a terribly expensive disease,” said Virginia Benson, whose 91-year-old husband, George, a psychiatrist and psychoanalyst, has Alzheimer’s.
George Benson lives in a nursing home in Webster Groves, Mo., because his wife can no longer care for him. The first home he lived in cost $6,000 a month. Virginia Benson found a less expensive one for veterans that cost $2,000 a month. After a two-year wait, he got in.
George Benson has almost no medical expenses. “It’s exclusively care costs,” his wife said. “All he needs is to be washed and dressed and fed. I have often felt a little guilty about putting him in care, but they said, ‘It takes three shifts of us to take care of him.’”
Nonetheless, she added, “It breaks my heart, it just breaks my heart.”
Nancy Olson, who lives in Franklin, Ind., struggled for years with care arrangements for her mother, who had vascular dementia and died in May. She tried assisted living, tried having her mother at home with part-time caregivers, and finally settled on a nursing home.
She spent about $65,000 of her own money and her mother’s in the five years before her mother died. As for her mother’s money, by the time she died, “it was gone,” Olson said.
John Rakis, a consultant in New York, spent more than $189,000 in less than two years for caregivers and other expenses for his mother-in-law, 92, who has dementia and lives in a housing project in Manhattan.
He promised his wife, who died in January 2013, that he would take care of her mother. She left a portion of her life insurance and death benefit money to her mother and Rakis spent it on her care.
Until it was gone.
“The money ran out in June,” Rakis said. “I was losing sleep.”
Then he discovered a Medicaid program that covers home health care for disabled people living at the poverty level.
Rakis remains actively involved in his mother-in-law’s care, overseeing her needs, including going with her when she ends up in an emergency room. He speaks regularly to doctors, nurses and social workers from Mount Sinai’s Visiting Doctors Program who make house calls. He has what amounts to a second job taking care of her, despite the full-time home health care aides he pays for.
“We were fortunate,” he said. “The money was there. But it went pretty quickly.”