Association for Frontotemporal Degeneration Release: Economic Burden Of FTD, Most Prevalent Young-Onset Dementia, Nearly Twice That Of Alzheimer's, Study Says

Published: Oct 05, 2017

RADNOR, Pa., Oct. 4, 2017 /PRNewswire-USNewswire/ -- According to a new study, frontotemporal degeneration (FTD), the most common dementia for people under age 60, inflicts a much more severe economic burden on families than Alzheimer's disease.

AFTD logo. (PRNewsFoto/Association for Frontotemporal Degeneration)

The study, which will appear in the November 14Neurology, found average annual costs associated with FTD total $119,654, nearly twice the reported annual cost of Alzheimer's.

The study is the first published in the U.S. to focus solely on quantifying FTD's economic impact. Data were gathered from 674 FTD caregivers, who completed an online survey designed by Dr. James E. Galvin of the Charles E. Schmidt College of Medicine at Florida Atlantic University, Dr. David H. Howard of Emory University, and staff of the Association for Frontotemporal Degeneration (AFTD). Lead author Dr. Galvin attributed the severity of FTD's economic burden to its young-onset nature, which results in "major losses of household income" as persons diagnosed and eventually, their family caregivers stop working.

"For years, we have known about the extraordinary economic burden shouldered by FTD caregivers, but now we have numbers to prove it," said AFTD CEO Susan L-J Dickinson. "This study shows that the financial toll of FTD is even more devastating than we imagined."

The study shows that median household income 12 months prior to FTD diagnosis was in the $75,000-$99,000 range. Twelve months after diagnosis, it fell to $50,000-$59,000, a drop of up to 50%.

FTD's symptoms include poor financial decisions 58% of caregivers surveyed reported that their loved one had made bad money choices.

Two out of three (67 percent) FTD caregivers reported declines in their health; more than half said they incurred higher personal healthcare costs.

These challenges point to a "need to address this disease from a policy perspective," Dr. Galvin said. By driving patients and caregivers out of the workforce, often during their peak earning years, FTD's impact is felt long after the person diagnosed has passed on. 

This study was supported by an AFTD grant.

The study is available at

About FTD: FTD causes progressive, irreversible changes to a person's personality, behavior, language and movement. Today, there is no cure.

About AFTD: AFTD is the leading national organization and a global leader focused exclusively on the FTD disorders, offering comprehensive help for all affected by FTD, and advancing hope for a future without this disease. Learn more at

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SOURCE Association for Frontotemporal Degeneration

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