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Background <p>Young-onset dementia (YOD), defined as dementia with symptom onset before the age of 65, is associated with distinct and often complex care needs that differ from those with late-onset dementia. Current national data on YOD incidence, prevalence, and demographic characteristics are limited, underscoring the importance of prospective studies to inform policy and tailored care services.</p> Methods <p>We conducted two prospective one-year prevalence and incidence studies using active case-finding in two Dutch catchment areas, one urban and one more rural region, between 2020 and 2022. Individuals with YOD making use of care services were registered in an online database. Data on dementia subtype, living situation, and migration background were collected to explore regional variation.</p> Results <p>We identified 372 individuals with YOD in the urban Rotterdam area, and 209 in the more rural Eindhoven-De Kempen area. Age-standardized prevalence per 100,000 individuals, standardized to the Dutch population, was 77.3 in the Rotterdam region, and 66.1 in the Eindhoven-De Kempen region for ages 30–69 years, and 46.3 and 36,9, respectively, for ages 30–64 years. Corresponding age-standardized incidence rates were 24.2 and 23.5 for ages 30–69 years, and 13.9 in both regions for ages 30–64 years. Alzheimer’s disease was the most common diagnosis in both areas. Compared with Eindhoven-De Kempen, the Rotterdam region had significantly more vascular dementia cases (<i>p</i> &lt; 0.05 for incidence, and <i>p</i> &lt; 0.001 for prevalence) and longer diagnostic delays (2.2 vs. 1.3 years between first GP consultation and diagnosis). Most individuals lived at home (76.4% and 85.4% resp. in Rotterdam and Eindhoven-De Kempen) and 30.8% in Rotterdam and 12.5% in Eindhoven-De Kempen had a migration background. Extrapolation of incidence figures suggests that between 14,655 and 20,340 individuals were living with YOD in the Netherlands in 2021.</p> Conclusions <p>This study estimates the number of people living with YOD in the Netherlands. In addition, our findings show regional variation in dementia subtypes, a high proportion of people with YOD living at home, and a substantial proportion of people with YOD with a migration background. These insights underline the importance of region‑specific, person‑centered, culture sensitive YOD care at home.</p>

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The prevalence and incidence of young onset dementia in the Netherlands: a prospective study in two catchment areas

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  • 发表日期：

    2026年6月22日

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  • Hanna E. Bodde,
  • Jackie M. Poos,
  • Guillaume H. P. R. Kolman,
  • Angeline Bosman,
  • Sten P. Willemsen,
  • Kirsten Peetoom,
  • Yolande A. L. Pijnenburg,
  • Raymond Koopmans,
  • Frans R. J. Verhey,
  • Marjolein E. de Vugt,
  • Christian Bakker,
  • Janne M. Papma

摘要

Background

Young-onset dementia (YOD), defined as dementia with symptom onset before the age of 65, is associated with distinct and often complex care needs that differ from those with late-onset dementia. Current national data on YOD incidence, prevalence, and demographic characteristics are limited, underscoring the importance of prospective studies to inform policy and tailored care services.

Methods

We conducted two prospective one-year prevalence and incidence studies using active case-finding in two Dutch catchment areas, one urban and one more rural region, between 2020 and 2022. Individuals with YOD making use of care services were registered in an online database. Data on dementia subtype, living situation, and migration background were collected to explore regional variation.

Results

We identified 372 individuals with YOD in the urban Rotterdam area, and 209 in the more rural Eindhoven-De Kempen area. Age-standardized prevalence per 100,000 individuals, standardized to the Dutch population, was 77.3 in the Rotterdam region, and 66.1 in the Eindhoven-De Kempen region for ages 30–69 years, and 46.3 and 36,9, respectively, for ages 30–64 years. Corresponding age-standardized incidence rates were 24.2 and 23.5 for ages 30–69 years, and 13.9 in both regions for ages 30–64 years. Alzheimer’s disease was the most common diagnosis in both areas. Compared with Eindhoven-De Kempen, the Rotterdam region had significantly more vascular dementia cases (p < 0.05 for incidence, and p < 0.001 for prevalence) and longer diagnostic delays (2.2 vs. 1.3 years between first GP consultation and diagnosis). Most individuals lived at home (76.4% and 85.4% resp. in Rotterdam and Eindhoven-De Kempen) and 30.8% in Rotterdam and 12.5% in Eindhoven-De Kempen had a migration background. Extrapolation of incidence figures suggests that between 14,655 and 20,340 individuals were living with YOD in the Netherlands in 2021.

Conclusions

This study estimates the number of people living with YOD in the Netherlands. In addition, our findings show regional variation in dementia subtypes, a high proportion of people with YOD living at home, and a substantial proportion of people with YOD with a migration background. These insights underline the importance of region‑specific, person‑centered, culture sensitive YOD care at home.