The Staggering Financial Burden of Dementia for Young People

By | October 10th, 2017

New research shows that the financial costs associated with frontotemporal dementia is twice as expensive as Alzheimer’s.

Dementia is an umbrella term for many types of neurodegenerative brain diseases. Frontotemporal dementia is perhaps one of the most threatening—notable for the swiftness with which it takes hold and for the relatively young age at which it strikes. Now, research shows that there is another factor to add to the distress it causes: Frontotemporal dementia, known as FTD, is one of the most expensive diagnoses, with costs associated coming in at twice that of Alzheimer’s.

Frontotemporal dementia accounts for up to half of dementia cases in those under 65. There is no cure or treatment, even though it was discovered over 100 years ago. And, perhaps most devastating: It strikes on average in a person’s 50s or 60s, though sometimes can set in as early as late 20s and 30s. After diagnosis, patients survive an average of eight years.

Because FTD onset is earlier than most dementias, patients are often in their prime working years—and so are their spouses, who typically carry the brunt of caregiving and disease management. The study found that average annual costs for FTD totaled almost $120,000, which is almost twice the reported expenditure for Alzheimer’s. In addition, 67 percent of caregivers reported a decline in their own health and 53 percent had increased health costs. Thirty-seven percent of caregivers reported that they left their jobs after their loved one’s FTD diagnosis.

Frontotemporal dementia had a severe effect on a household’s bottom line, too: household income in the year before diagnosis ranged from $75,000 to $99,000; after it shrank to $50,000 to $59,999.

The research highlights the need to better understand and anticipate the economic burden of dementia, and the devastating effect it can have on both a patient and caregiver’s finances and future.

“We hope that our study will provide a better understanding of the substantial socioeconomic burden of frontotemporal degeneration and deliver the needed evidence to help inform health care policy, drive research agendas, and enhance targeted allocation of resources that will lead to timely and accurate diagnosis as well as effective treatments where none exist today,” said James E. Galvin, M.D., lead author of the study and associate dean for clinical research at Florida Atlantic University’s College of Medicine.

The study was published in Neurology, the medical journal of the American Academy of Neurology.

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