The High Cost of Dementia

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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 was covered by Medicare.

A recent The New York Times article, "Costs for Dementia Care Far Exceeding Other Diseases, Study Finds," reports that for many families, the cost of caring for a dementia patient will in many cases consume all of their household wealth.

Most families just aren't prepared for the financial burden of dementia. They assume that Medicare cover all of the expenses. Not so. Patients and their families don't realize that isn't the case. Plus, everything gets more complicated when an individual has dementia.

For example, if a dementia patient in a nursing home gets a fever, the staff may say that they aren't equipped to handle it. They call 911. The patient is then admitted to the hospital. This can lead to complications for the patient suffering from dementia. They may get delirious and confused, slip or fall out of bed and sustain injuries, or they choke on their food. This can cause medical costs to sky-rocket.

There are large disparities in out-of-pocket costs for the three diseases. Medicare covers discrete medical services like office visits and acute care, including hospitalization and surgery. These are the types of expenses experienced by cancer patients and heart patients. Those patients usually don't need full-time home or nursing home care until the very end of their life, if at all. As a result, they don't see that continuing cost. On the other hand, dementia patients need constant care for years. In addition, these dementia patients may not be sick enough for a nursing home, but they still will need supervision and care.

When dementia patients are sick enough for a nursing home, the cost is not covered by health insurance. More than half of patients with dementia— with three-quarters of those from racial minorities—spend down, using savings to pay for the nursing home until the money is all gone. After that, Medicaid takes over.

Talk with an experienced elder law attorney about care for the elderly, Medicaid, and dementia. He or she will have ideas on how to best address your family's situation.

Reference: The New York Times (October 26, 2015) "Costs for Dementia Care Far Exceeding Other Diseases, Study Finds"

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