Badanie opublikowane w czasopiśmie Diagnosis, Assessment & Disease Monitoring investigates the incidence of neurodegenerative young-onset dementias (YODs) like FTD in the Brescia province of Italy.

As highlighted by the authors of the study, the focus of most services for persons affected by dementia are tailored to the needs of older people and are often unsuited to the needs of younger adults affected by disorders like FTD. YODs frequently occur when people are raising families and advancing their careers, and they can put a significant financial strain on those affected. The study authors underscored the need for updated data on the incidence rates of YODs, pointing to the unmet needs of families and the evolution of clinical criteria used to diagnose FTD and other disorders.

To evaluate the incidence rate across the general population of Italy, the authors turned to registry data collected in Brescia. The province operates 11 Centers for Cognitive Disorders and Dementias (CCDD) that provide free care to persons diagnosed through Italy’s National Health System. Like dementia centers in the US, the CCDDs collaborate with researchers by providing them with data.

The authors collected data only from those who visited a CCDD in 2019 and received a diagnosis of FTD, young-onset Alzheimer’s disease, or young-onset Dementia with Lewy Bodies (DLB). The researchers also examined the incidence rates of known FTD subtypes, recording uncertain diagnoses under “unspecified FTD.” People who participated in the study were first referred to a CCDD by their doctor based on their symptoms before undergoing dementia screenings by neurologists. Those whose symptoms and disease features met diagnostic criteria for FTD, Alzheimer’s, or DLB were considered for the study.

Researchers recorded a detailed clinical history for each participant using a carefully structured questionnaire, with particular attention paid to the age at disease onset and the time from onset to diagnosis. In some cases, Researchers assisted in confirming a diagnosis through PET scans and testing cerebrospinal fluid samples for biomarkers.

Throughout 2019, 29 people were diagnosed with young onset dementia in Brescia, with 15 receiving an FTD diagnosis. Twelve were diagnosed with young-onset Alzheimer’s, and the remaining two with DLB. Among those with FTD, the authors documented a diagnosis from every known FTD subtype aside from FTD-ALS:

• Five diagnosed with behavioral variant FTD
• Two diagnosed with nonfluent/agrammatic variant primary progressive aphasia
• Two diagnosed with semantic variant primary progressive aphasia
• Three diagnosed with corticobasal syndrome
• One diagnosed with progressive supranuclear palsy

Over the course of the one-year study, Researchers found the incidence rate of young-onset dementia in Brescia to be 4.55 cases per 100,000 people. According to the authors, this would result in across the whole population of Italy in 2019, with an incidence rate of 5.04% per 100,000 people. The incidence rate of FTD was 2.37 cases per 100,000 people, with young-onset Alzheimer’s at 1.90 cases and DLB at 0.31 cases. The average age at diagnosis was 62, with the median time between symptoms appearing and diagnosis being two years.

The authors note that their findings are contrary to previous research that claimed Alzheimer’s disease was the most frequent cause of young-onset dementia. The researchers theorize that this discovery may be at least partially explained by increasing awareness of FTD.

Many opportunities are available to participate in research studies that drive FTD science toward a cure. Learn more about your options by visiting our Sposoby uczestnictwa page.

Resources for families dealing with FTD are expanding worldwide – AFTD’s website can help you find international FTD support options near you. If you have questions about international resources, contact Infolinia AFTD at: 1-866-507-7222 Lub info@theaftd.org.