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Dementia Most Costly Terminal Disease, Study Says


Families may spend almost twice as much caring for dementia patients at the end of life than they might if their loved one suffered from a different disease, a U.S. study suggests.

Costs paid by Medicare, the U.S. health insurance program for the elderly, were similar over the final five years of life for patients with dementia, heart disease, cancer and other conditions, according to the study published in the Annals of Internal Medicine.

But the average out-of-pocket costs absorbed by families of dementia patients totaled $61,522 over those five years, far greater than the typical tab of $34,068 for patients without dementia.

"Many costs related to daily care for patients with dementia are not covered by health insurance, and these care needs, including everything from supervision to bathing and feeding, may span several years," lead author Dr. Amy Kelley of the Icahn School of Medicine at Mount Sinai in New York said by email.

To assess the financial toll dementia takes on families, Dr. Kelley and colleagues analyzed Medicare spending and out-of-pocket costs for about 1,700 people aged 70 and older who died between 2005 and 2010.

Over the five years prior to each patient's date of death, the average total cost, including what Medicare covered as well as what families paid, was about $287,000 for dementia patients. That compares with roughly $175,000 for heart disease, $173,000 for cancer, and $197,000 for people who died of other causes.

Families caring for dementia patients also spent a greater proportion of their wealth than families helping loved ones with other conditions. The financial burden as a proportion of wealth was even more pronounced for patients who were black, had less than a high school education, or were unmarried or widowed women.

Shortcomings of the study include the possibility that insurance payments may have been underestimated as well as the lack of data on wages family members may have lost while caring for their loved ones, the authors acknowledge.

In addition, researchers measured only the probability of dementia and not whether the patients actually had dementia, the authors note. Few death certificates for patients with dementia will list that as the primary cause; instead, they report the problem that actually caused the patient to die, such as pneumonia.

Even so, the study findings highlight a financial burden posed by end-of-life care for elderly dementia patients that care reverberate through multiple generations, noted Carol Levine, director of the Families and Health Care Project at the United Hospital Fund, an independent policy group in New York City.

"There is a cascading effect: the financial drain for the older person's care means fewer resources not only for the caregiver but also for the younger generation's education and future prospects," Levine, who wasn't involved in the study, said by email.

"The immediate need for assistance is so compelling that future needs are often disregarded," Levine added. "The impact is greatest on families with the fewest resources to start with."

Many families also run into financial trouble because they mistakenly believe Medicare will pay for long term care services, said Dr. Mark Lachs, an expert in aging and finances at Weill Cornell Medical College in New York who wasn't involved in the study.

Families may consider long term care insurance to cover this gap in Medicare benefits, Dr. Lachs said by email.

Policy changes that might pay family members to be dementia caregivers would also help ease the financial strain, Dr. Lachs added.

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