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Costs for Dementia Care Far Exceeding Other Diseases, Study Finds - The New York Times

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.


John Rakis visiting Naomi Wallace, his mother-in-law. Mr. Rakis spent more than $189,000 in less than two years for caregivers and other expenses.CreditSam Hodgson for The New York Times

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.

Everything gets complicated when a person has dementia, noted Dr. Christine K. 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.


Costs for Dementia Care Far Exceeding Other Diseases, Study Finds - The New York Times

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