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 over 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 S. Kelley,
a geriatrician at Icahn School of Medicine at Mt. 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 E. 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,” Dr. Meier said.
To
obtain cost estimates, Dr. 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, Dr. 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.
