In recognition of Frontotemporal Dementia Awareness Week, OHE shares ongoing work quantifying the disease burden and cost-of-illness associated with FTD.
What is frontotemporal dementia?
Frontotemporal dementia (FTD) is an umbrella term for a group of neurodegenerative disorders characterised by the progressive degeneration of the frontal and/or temporal lobes.
Unlike Alzheimer’s disease, problems with memory loss tend to present later in FTD patients. Instead, symptoms often begin with changes in personality, motor skills, behaviour, or communication.
FTD is the second most common form of young-onset dementia after Alzheimer’s disease. The annual incidence is estimated at 2.36 cases per 100,000 person-years, with 12,000 new cases in Europe diagnosed each year. This suggest that FTD-associated syndromes are more common than previously recognised.
Although most cases of dementia typically affect people over 65, FTD tends to start at a younger age, with most FTD cases diagnosed in people aged 45-65. This means that in addition to the severe clinical and emotional burden of early-onset FTD, it also incurs substantive economic costs, including productivity losses, employee absenteeism, and associated costs related to formal and informal caregiving. Additionally, delayed diagnoses can in some cases lead to erratic financial decisions that present as gambling, or missed or delayed payments, by patients, which can can have substantial and costly consequences for both the patient and their families.
Obstacles to Diagnosis
Getting an accurate diagnosis of FTD is often slow and complicated — the median time from symptom onset to diagnosis in Europe has been estimated at 2.4 years, with delays extending up to 10 years. A survey of nearly 700 caregivers reported that 65% of FTD patients required three or more consultations with clinicians before receiving an FTD diagnosis, more than one-fifth requiring more than ten clinical visits.
However, ongoing advances in precision medicine and neuroimaging provide vital opportunities for earlier and more accurate diagnoses for FTD patients.
The Predict-FTD Consortium
The PREDICT-FTD consortium, funded by the European Horizon programme, was established to advance early and accurate diagnosis of FTD through validation of novel biomarkers and the development of AI-driven diagnostic tools. The consortium brings together experts and institutions from Finland, Germany, Italy, Lithuania, Luxembourg, the Netherlands, Spain, and the United Kingdom.
OHE is leading on the economic evaluation, quantifying the disease burden and costs of FTD, and developing an economic model to estimate the potential value of biomarker-led diagnostic pathways.
Understanding the Burden of FTD
To support this work, OHE is conducting a targeted literature review on the costs and burden of FTD, covering health-related and financial impacts on patients, caregivers, and wider society. Key findings include:
Evidence Base: Around 300 studies were screened, of which 30 were included in the final review. The majority focused on health outcomes, while only a few provided cost-of-illness (COI) estimates.
- High burden and societal costs: Patients and carers experience significant burden in this form of dementia, with greater declines in quality of life than in other types of dementia. In addition to direct healthcare costs, societal costs—especially productivity losses—are substantial due to the younger age of those affected.
- Diagnosis-related costs excluded: None of the COI studies captured diagnostic costs, where delays and misdiagnoses not only contribute to diagnostic costs and caregiver burden, but also (additional) downstream impacts.
Concluding Thoughts
OHE’s targeted literature review will highlight the substantial disease burden and societal costs associated with FTD, while identifying some gaps in cost-of-illness evidence, particularly around diagnostic costs and their downstream consequences.
By generating robust data and demonstrating the value of earlier diagnosis, Predict-FTD aims to reduce diagnostic delays, improve patient and caregiver outcomes, and alleviate both health system and societal impacts of the disease.
OHE’s review will be published on the project’s official website. Visit the Predict-FTD website for updates and further information.