Young-onset dementia in memory clinics in the Netherlands: Study design and description of PRECODE-GP
Aniek M van Gils1,2, Hanneke F M Rhodius-Meester1,2,3,4, Anna E Leeuwis1,2
1Alzheimer Center Amsterdam Department of Neurology Vrije Universiteit Amsterdam Amsterdam The Netherlands.
Insights
A new national database in the Netherlands captures data on young-onset dementia (YOD) patients under 70. This initiative aims to improve diagnosis and care for this vulnerable group, providing crucial insights into YOD characteristics.
Area of Science:
- Neurology
- Geriatrics
- Public Health
Background:
- Young-onset dementia (YOD) presents distinct challenges in disease progression and healthcare needs compared to late-onset forms.
- Accurate epidemiological data on YOD is essential for enhancing diagnostic accuracy and optimizing patient care strategies.
- Existing research often underrepresents YOD, necessitating dedicated data collection efforts.
Purpose of the Study:
- To establish a prospective national database (PRECODE-GP) for patients diagnosed with young-onset dementia (YOD) in the Netherlands.
- To investigate the incidence and clinical characteristics of YOD patients within Dutch memory clinics.
- To lay the groundwork for future research and improved management of YOD.
Main Methods:
- Prospective data collection from memory clinics across the Netherlands.
- Inclusion of dementia patients diagnosed under the age of 70 years.
- Data gathered included demographics, clinical variables, and etiological diagnoses.
Main Results:
- A total of 781 patients were included between July 2019 and December 2022, with a mean age of 62±6 years at diagnosis.
- Alzheimer's disease (AD) was the most common diagnosis (70%), followed by Frontotemporal lobe dementia (FTD, 11%).
- A significant proportion (55%) of patients experienced symptoms for two years or more prior to diagnosis.
Conclusions:
- The establishment of the PRECODE-GP database provides valuable insights into the characteristics of YOD in the Netherlands.
- This national initiative addresses the underrepresentation of YOD in research and clinical practice.
- The database serves as a foundation for future studies aimed at improving the diagnosis and care of young-onset dementia.
Abstract:
The disease trajectory and healthcare requirements of patients with young-onset dementia (YOD) differ from those of older patients. Accurate data about YOD is crucial to improve diagnosis and optimize care. PRECODE-GP aims to set up a prospective national database of patients with YOD to gain insight into the occurrence and characteristics of patients with YOD in memory clinics in the Netherlands. The national database includes data from dementia patients aged <70 years at diagnosis, collected by local memory clinics (MCs). Data included demographic information, clinical variables, and (etiological) diagnoses. Between July 2019 and December 2022, 781 patients with a mean age of 62±6y at diagnosis (range 37 to 69y) were included from 39 MCs. Most (n = 547,70%) were diagnosed with dementia due to Alzheimer's disease (AD). Patients with Frontotemporal lobe dementia (FTD, n = 87, 11%) were youngest (61±6.0y). Over half (55%) of patients were experiencing symptoms for ≥2 years. We initiated a Dutch national YOD database to improve diagnosis and care for this underrepresented and vulnerable patient group. The database provides a basis for future in-depth studies on YOD.
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