title: The Impact of Young Onset Dementia on Informal Caregivers Compared with Late Onset Dementia: Results from the NeedYD Study.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The Netherlands. Electronic address: joany.millenaar@maastrichtuniversity.nl.
authors.forename: Joany K
authors.initials: JK
authors.lastname: Millenaar
authors.affiliation: School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The Netherlands.
authors.forename: Marjolein E
authors.initials: ME
authors.lastname: de Vugt
authors.affiliation: Florence Mariahoeve Center for Specialized Care in Young-Onset Dementia, Den Haag, the Netherlands; Department of Primary and Community Care: Center for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Center, Nijmegen, the Netherlands.
authors.forename: Christian
authors.initials: C
authors.lastname: Bakker
authors.affiliation: Alzheimer Center Nijmegen, Radboud University Medical Center, Nijmegen, the Netherlands.
authors.forename: Deliane
authors.initials: D
authors.lastname: van Vliet
authors.affiliation: Alzheimer Centre and Department of Neurology, VU University Medical Centre, Amsterdam, the Netherlands.
authors.forename: Yolande A L
authors.initials: YA
authors.lastname: Pijnenburg
authors.affiliation: Department of Primary and Community Care: Center for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Center, Nijmegen, the Netherlands; Alzheimer Center Nijmegen, Radboud University Medical Center, Nijmegen, the Netherlands; Joachim en Anna Centre for Specialized Geriatric Care, Nijmegen, the Netherlands.
authors.forename: Raymond T C M
authors.initials: RT
authors.lastname: Koopmans
authors.affiliation: School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The Netherlands.
authors.forename: Frans R J
authors.initials: FR
authors.lastname: Verhey
mesh_terms: D000222:Adaptation, Physiological; D000223:Adaptation, Psychological; D017668:Age of Onset; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000451:nursing*; D003863:Depression / Q000453:epidemiology*; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D011446:Prospective Studies; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life; D012044:Regression Analysis; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires
keywords: Young onset dementia; burden; caregivers; impact; well-being