The Impact of Young Onset Dementia on Informal Caregivers Compared with Late Onset Dementia: Results from the NeedYD Study

Joany K. Millenaar*, Marjolein E. de Vugt, Christian Bakker, Deliane van Vliet, Yolande A. L. Pijnenburg, Raymond T. C. M. Koopmans, Frans R. J. Verhey

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Objectives: The impact of the dementia might be more severe for caregivers of people with young onset dementia (YOD) compared with those who care for someone with late onset dementia (LOD), as a young age among caregivers has been identified as a predictor of increased burden. The present study compares well-being between LOD and YOD caregivers longitudinally because this knowledge is essential in order to develop adequate support programs. Design, Setting, and Participants: 220 YOD and 108 LOD patient-caregiver dyads were included from two prospective cohorts with a 2-year follow up. To assess well-being we used the Short Sense of Competence Questionnaire, the RAND-36, the Symptom Checklist 90, and the Montgomery Asberg Depression Rating Scale. The severity and the course of the different measures used to describe caregiver burden were analyzed with linear mixed models. Results: Caregivers in both groups experienced high levels of physical and psychological complaints, mild depressive symptoms, lower health-related quality of life (HRQoL), and decreased feelings of competence. The severity and the course of most measures were similar in both groups, although HRQoL on both the physical and the mental domain was lower for the YOD caregivers. Conclusions: The number of actual psychological and physical complaints does not differ between YOD and LOD caregivers. YOD caregivers have greater perceived difficulties in daily life because of these complaints, however.
Original languageEnglish
Pages (from-to)467-474
JournalAmerican Journal of Geriatric Psychiatry
Issue number6
Publication statusPublished - Jun 2016


  • Young onset dementia
  • caregivers
  • impact
  • burden
  • well-being

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