Survival and life-expectancy in a young-onset dementia cohort with six years of follow-up: the NeedYD-study

Int Psychogeriatr. 2019 Dec;31(12):1781-1789. doi: 10.1017/S1041610219000152. Epub 2019 Mar 27.


Objectives: The aim of this study was to investigate survival time and life-expectancy in people with young-onset dementia (YOD) and to examine the relationship with age, sex, dementia subtype and comorbidity.

Design, setting and participants: Survival was examined in 198 participants in the Needs in Young-onset Dementia study, including participants with Alzheimer's dementia (AD), vascular dementia (VaD) and frontotemporal dementia (FTD).

Measures: The primary outcomes were survival time after symptom onset and after date of diagnosis. Cox proportional hazards models were used to explore the relationship between survival and age, sex, dementia subtype and comorbidity. Additionally, the impact on remaining life expectancy was explored.

Results: During the six-year follow-up, 77 of the participants died (38.9%), 78 participants survived (39.4%) and 43 were lost to follow-up (21.7%). The mean survival time after symptom onset and diagnosis was 209 months (95% CI 185-233) and 120 months (95% CI 110-130) respectively. Participants with AD had a statistically significant shorter survival compared with VaD participants, both regarding survival after symptom onset (p = 0.047) as well as regarding survival after diagnosis (p = 0.049). Younger age at symptom onset or at diagnosis was associated with longer survival times. The remaining life expectancy, after diagnosis, was reduced with 51% for males and 59% for females compared to the life expectancy of the general population in the same age groups.

Conclusion/implications: It is important to consider the dementia subtype when persons with YOD and their families are informed about the prognosis of survival. Our study suggests longer survival times compared to other studies on YOD, and survival is prolonged compared to studies on LOD. Younger age at symptom onset or at diagnosis was positively related to survival but diagnosis at younger ages, nevertheless, still diminishes life expectancy dramatically.

Keywords: Dementia; Long-Term Care; Young Onset Dementia.

Publication types

  • Multicenter Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Age of Onset*
  • Aged
  • Alzheimer Disease / mortality*
  • Dementia, Vascular / mortality*
  • Female
  • Follow-Up Studies
  • Frontotemporal Dementia / mortality*
  • Humans
  • Life Expectancy / trends*
  • Male
  • Middle Aged
  • Netherlands / epidemiology
  • Quality of Life
  • Survival Analysis