Newswise — While the social and economic cost of Alzheimer’s to patients and families is well documented, research shows one prevalent form of young-onset dementia exacting a far greater toll. 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 patients and their caregivers than Alzheimer’s disease, as well as other forms of dementia that typically show their first symptoms later in life.
The study, which will be published in the November 14 print issue of Neurology (and is available online), found the average annual costs associated with FTD to total $119,654, nearly two times greater than the reported annual cost of Alzheimer’s.
The study is the first published in the U.S. to focus solely on quantifying the economic impact of FTD. Data were gathered from 674 FTD caregivers, who filled out 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). Dr. Galvin, the study’s lead author, attributed the severity of FTD’s economic burden to its young-onset nature, which results in “major losses of household income” as persons diagnosed with the disease – and eventually, their family caregivers – drop out of the workforce.
“For years, we have known about the extraordinary economic burden shouldered by FTD caregivers, but now we have the 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 an FTD diagnosis was in the $75,000-$99,000 range. But twelve months after diagnosis, it fell to the $50,000-$59,000 range, a drop of up to 50%.
FTD’s symptoms include poor financial decisions – 58% of caregivers reported that their loved one had made bad choices with money, the study shows.
In some instances, these decisions can devastate a family’s finances, as in the case of Nancy Carlson, a successful author and illustrator of children’s books. Nancy’s late husband, Barry, managed the financial side of her business – “he paid the bills, did the insurance, everything. I never asked that much about it.”
Nancy didn’t discover how badly Barry had mismanaged their finances – accruing huge debt, failing to pay income taxes for eight years – until they had lost nearly everything. Nancy estimates that her husband’s FTD cost her upwards of $500,000 total.
Another Cost: Health Issues for Caregivers
FTD caregivers also commonly suffer health issues as well. Two out of three (67 percent) reported notable declines in their health; more than half (53 percent) said they incurred higher personal health care 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 can be felt long after the person diagnosed has passed on.”
All study participants were asked to complete a 250-question Internet survey, and were recruited for the study via announcements distributed by AFTD to members of the FTD community. The survey was beta-tested and revised for clarity and readability prior to its use. Responses were analyzed using sophisticated software packages.
The questionnaire was completed by caregivers of people with a number of forms of frontotemporal degeneration, including: behavioral variant FTD (bvFTD), primary progressive aphasia (PPA), FTD with motor neuron disease (FTD-MND), corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP). The survey included validated scales for disease staging, behavior, activities of daily living, caregiver burden, and health economics, as well as investigator-designed questions to capture patient and caregiver experience with FTD.
This study was supported by a grant from AFTD.
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 www.theaftd.org.
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Neurology, November 14, 2017