FTD Takes a Greater Financial Toll Than Alzheimer's

Pam Harrison

October 04, 2017

The financial costs associated with frontotemporal degeneration (FTD), the most common dementia in patients under age 60 years, are nearly twice as high as those associated with Alzheimer's disease (AD), new research shows.

Results from the web-based survey show the total annual per-patient cost of caring for a patient with FTD was $119,654 in 2016 US dollars, roughly two times higher than reported costs of taking care of a patient with AD.

The median annual household income 12 months before an FTD diagnosis was in the range of $75,000 to $99,000. But 12 months after diagnosis it fell to the $50,000 to $59,000 range — a drop of up to 50% (< .001).

"Most patients with FTD are working age, and most patients have to leave the labor force during their peak earning years, [while] caregivers of patients with FTD may also need to alter their careers to provide care," the investigators, with lead author James Galvin, MD, MPH, professor of integrated medical sciences and associate dean for clinical research at the Charles E. Schmidt College of Medicine, Florida Atlantic University in Boca Raton, write.

"Combined, these factors contribute to a substantial decrease in household income," the authors add.

The study was published online October 4 in Neurology.

The web-based survey was directed to primary caregivers of patients with FTD; 674 individuals responded to the survey.

Respondents were asked 250 questions about their experiences and FTD-related resource use. The annual cost of taking care of a patient with FDT was then calculated on the basis of survey findings.

"The majority of caregiver respondents were female spouses, while the majority of patients were men," the investigators note.

All clinical phenotypes of FTD were represented: behavioral-variant FTD, primary progressive aphasia, FTD with motor neuron disease, and Parkinson-plus movement disorders due to progressive supranuclear palsy or corticobasal syndrome.

"At the time of [the] survey, 45% of caregivers still worked," investigators note. Following the patient's diagnosis, 37% were no longer employed and only 3.3% of patients still worked after being diagnosed with FTD.

The number of days lost even with full-time working was significant, with caregivers and patients reporting a median loss of 7 days over the preceding 4 weeks because of FTD-related issues.

Two thirds of the caregivers also reported that the diagnosis of FTD in the patient had led to a "notable decline" in their own health.

"On average, patients required 6 overnight respite stays, 16 daytime respite stays, 35 clinician visits, and 2 hospital or emergency room visits," the authors write.

Over 30% of respondents also indicated that they needed to hire a paid caregiver several times a week. Thus, total direct costs came out to $47,916 to care for each patient, while total indirect costs mounted up to $71,737, they add.

Survey respondents were also asked several questions in order to arrive at estimated quality-adjusted life-years (QALYs) for the patient cohort.

Not surprisingly, "QALYs were lower for patients in the severe and terminal stages [of FTD], with scores indicating that patients' quality of life is worse than dead (p < 0.001)," the authors report.

Lastly, using a subsample of patients from the Health and Retirement Study (HRS) carried out in the United States, investigators determined that annual direct costs of caring for patients with AD were $33,329, while annual indirect costs were $30,839, for a total annual cost of $64,168 per patient.

Thus, "overall costs of dementia care estimated from the HRS data were 53% lower than our reported total costs for FTD," they note.

In a release, Susan L-J Dickinson, CEO of the Association for Frontotemporal Degeneration, said that they have long have known that taking care of patients with FTD is a major economic strain for all involved.

"But now we have the numbers to prove it. This study shows that the financial toll of FTD is even more devastating than we imaged," she added. 

The study was supported by a grant from the Association for Frontotemporal Degeneration. Dr Galvin serves as a scientific advisor for Axovant, Biogen, Eisai, and Eli Lilly and receives licensing fees from Pfizer, Eli Lilly, Axovant, and Quintiles.

Neurology. Published online October 4, 2017. Abstract

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