The social and economic burden of frontotemporal degeneration

Abstract

Objective:To quantify the socioeconomic burden of frontotemporal degeneration (FTD) compared to previously published data for Alzheimer disease (AD).Methods:A 250-item internet survey was administered to primary caregivers of patients with behavioral-variant FTD (bvFTD), primary progressive aphasia, FTD with motor neuron disease, corticobasal syndrome, or progressive supranuclear palsy. 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.Results:The entire survey was completed by 674 of 956 respondents (70.5%). Direct costs (2016 US dollars) equaled $47,916 and indirect costs $71,737, for a total annual per-patient cost of $119,654, nearly 2 times higher than reported costs for AD. Patients ≥65 years of age, with later stages of disease, and with bvFTD correlated with higher direct costs, while patients <65 years of age and men were associated with higher indirect costs. An FTD diagnosis produced a mean decrease in household income from $75,000 to $99,000 12 months before diagnosis to $50,000 to $59,999 12 months after diagnosis, resulting from lost days of work and early departure from the workforce.Conclusions:The economic burden of FTD is substantial. Counting productivity-related costs, per-patient costs for FTD appear to be greater than per-patient costs reported for AD. There is a need for biomarkers for accurate and timely diagnosis, effective treatments, and services to reduce this socioeconomic burden.

Concentration-Dependent Activity of Hydromethylthionine on Clinical Decline and Brain Atrophy in a Randomized Controlled Trial in Behavioral Variant Frontotemporal Dementia

“…Because the typical age of onset is earlier than for AD [11,12], the condition has a direct impact on working life and on household income. At 2016 US costs, bvFTD was found to reduce income from $75,000-$99,000 before diagnosis to $50,000 [13].…”

Perceived burden among caregivers of patients with frontotemporal degeneration in the United States

“…Due to the early onset and unique collection of symptoms, FTD places a distinct burden on caregivers compared to other dementia types such as AD or Lewy body dementia (LBD) (Leggett et al, 2011). Studies suggest that caregiver burden is greater in FTD and LBD, compared to AD (Liu et al, 2017b), and the financial costs are higher in early onset dementia due to FTD versus AD (Galvin et al, 2017;Kandiah et al, 2016). FTD is unique in that it more often affects individuals in their prime income-earning years, when they may be caring for school-age children.…”

The Quick Physical Activity Rating (QPAR) scale: A brief assessment of physical activity in older adults with and without cognitive impairment

“…The FCI contains 18 items rated as present or absent, with higher scores supporting greater co-morbidities that contribute to functional impairment. The Health Utilities Index-Mark 3 [ 32 ] was used to rate health-related quality of life and health status, which we have previously validated in dementia studies [ 33 ].…”