Care in the last five years of life costs much more for patients with dementia than for those who die of heart disease, cancer, or other causes, a new study shows.

In addition to costing more across the board, out-of-pocket spending for patients with dementia is 81 percent higher than for people with other diseases. according to the study, conducted by the Icahn School of Medicine at Mount Sinai, Dartmouth College and University of California, Los Angeles and funded by the National Institute on Aging.

The burden is disproportionately high when the patients are black, have less than a high school education or are widowed or unmarried women, said the study, which looked at patient and family expenses as well as Medicare and Medicaid spending.

Using data from 1,702 Medicare recipients 70 or older who died between 2005 and 2010, researchers found that the average cost of caring for those with dementia in the last five years of life was $287,038, compared with $175,136 for those who died of heart disease, $173,383 for those who died of cancer, or $197,286 for those who died of other causes. The data was supplied by the Health and Retirement Study.

One reason for the discrepancy is the fact that patients with dementia often require care for many years, and much of the care they need is not covered by insurance. Medicare does not cover health-related expenses such as homecare services, equipment, and non-rehabilitative nursing care, the study said.


“Those needs are beyond the realm of what Medicare pays for, so families have to either pay for it out of pocket or provide that care themselves, resulting in lost wages,” said Amy Kelly, associate professor of geriatrics and palliative medicine at Icahn and lead author of the report.

“With a serious illness like cancer, care may be expensive, but it may be more concentrated on the last year or two of life,” she said, adding that cancer care is also more likely to be provided by health care professionals and covered by insurance, while ongoing dementia care is often paid for or provided, unpaid, by family members.

While families at the lower end of the socioeconomic spectrum may spend a lower absolute amount in out-of-pocket costs, they make up for it by providing more hours of unpaid care, which jeopardizes their financial outlook, Kelley said.

Race plays a dramatic role in how much is paid out-of-pocket as a proportion of wealth, the study found. For black dementia patients, the median spending amounted to 83.6 percent of their wealth, compared to 31.8 percent among non-black dementia patients. The burden was also striking for unmarried women with dementia, whose spending was 58.2 percent of their wealth, compared to 7.4 among married women.

“You can run through everything,” said John Haaga, acting director of the division of behavioral and social research at NIA.

The extent of the burden can be affected by external factors such as where a patient lives, with some states and local jurisdictions providing more services than others, Haaga added.

Experts have warned of a looming caregiver crisis as families are unable to meet the rising demands of an aging population with increasingly smaller families. Alzheimer’s disease, the most common form of dementia, currently afflicts 5.1 million Americans and is projected to affect 13.8 million by 2050; those caring for people with Alzheimer’s typically spend more than $50,000 a year on related expenses.

As more people live into their 80s, 90s, and beyond, the incidence of dementia and related costs are expected to rise accordingly.

“This is already the biggest health care expense and it’s only going to get larger,” Haaga said.

The U.S. spends significantly more per capita on health care than other industrialized countries and less on social services.

“We need to ask ourselves how we can do better so that older adults are getting the care they deserve,” said Kelley, “I think this study puts a spotlight on this and asks if there’s more we can do such that the balance is drawn into place.”

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