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Dementia quickly becomes expensive for families

Dementia is brutal enough on those who suffer from the condition, and their family members who have to watch their loved one struggle. Unfortunately, family members also have to shoulder the financial burden of care. Even with Medicaid and Medicare, close loved ones of dementia patients often end up having to pay sky-high medical care costs.

A new study from the Brown University of Public Health looked at the growing dementia epidemic sweeping the US. The team of researchers created a simulation to model the expenses and financial toll that families face to provide care for loved ones afflicted with neurodegenerative conditions.

The research found that health care costs for people suffering with dementia were more than double that of people without the condition. The numbers are startling, especially considering that 70 percent of the costs fell on patients and families. The average costs of care for persons with dementia were found to be more than $300,000 over five years.

The study and simulation are particularly innovative because they represent a novel concept of looking at dementia care costs over the long term, factoring in how the symptoms of the disease progress over time.

“The modeling structure I used was able to synthesize data from different sources and put them together to form this long-term picture, over the course of the disease, that currently doesn’t exist in any one place,” said Eric Jutkowitz, the study’s lead author and an assistant professor at the Brown University of Public Health.

To conduct the study and create a reliable simulation of data, Jutkowitz and his research team gathered data from the National Alzheimer’s Coordinating Center Uniform Data Set, the Aging Demographics and Memory Study, and Federal Medicare Records.

The researchers then used this data to simulate the medical costs of computer generated patients with a varied set of demographics including gender, race, income, location, and any other pre-existing diseases like diabetes. Jutkowitz ran 16,000 computer generated patients through the simulation to examine what the costs of care were over time as the disease progressed.

The financial costs were found to be significantly higher than those patients without dementia. The simulation also showed that Medicare and Medicaid would only cover a fraction of the actual costs with the majority of financial responsibility falling on family members.

“A lot of people, I think, believe that Medicare will pay for their long-term care,” said Jutkowitz. “That’s not the case. Private long-term care insurance may help, but benefits can be exhausted and few families have policies. For a disease like dementia, the burden and cost fall on the individual and the family.”

Neurodegenerative conditions like Parkinson’s and Alzheimer’s and are proving to be a growing problem, with five million Americans affected today and an entire generation of baby boomers set to reach age 65 or older by 2029. Understanding just what the costs will be over time could prove to be a critical component to help families and government programs prepare for the costs ahead.

By Kay Vandette, Staff Writer

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