title: The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study.
abstract: BACKGROUND
  Little is known about care needs in young-onset dementia (YOD) patients, even though this information is essential for service provision and future care planning. We explored: (1) care needs of people with YOD, (2) the level of agreement within patient-caregiver dyads on care needs, and (3) the longitudinal relationship between unmet needs and neuropsychiatric symptoms.
  
  
  METHODS
  A community-based prospective study of 215 YOD patients-caregiver dyads. Care needs were assessed with the Camberwell Assessment of Need for the Elderly. The level of agreement between patient and caregivers' report on care needs was calculated using κ coefficients. The relationship between unmet needs and neuropsychiatric symptoms over time, assessed with the Neuropsychiatric Inventory, was explored using linear mixed models.
  
  
  RESULTS
  Patients and caregivers generally agreed on the areas in which needs occurred. Only modest agreement existed within patient-caregiver dyads regarding whether needs could be met. Patients experienced high levels of unmet needs in areas such as daytime activities, social company, intimate relationships, and information, leading to an increase in neuropsychiatric symptoms.
  
  
  CONCLUSIONS
  Our findings indicate that in YOD, there are specific areas of life in which unmet needs are more likely to occur. The high proportions of unmet needs and their relationship with neuropsychiatric symptoms warrant interventions that target neuropsychiatric symptoms as well as the prevention of unmet needs. This underlines the importance of the periodic investigation of care needs, in which patient and caregiver perspectives are considered complementary.
authors.affiliation: Florence,Mariahoeve,Centre for Specialized Care in Early Onset Dementia,the Hague,the Netherlands.
authors.forename: Christian
authors.initials: C
authors.lastname: Bakker
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: School for Mental Health and Neuroscience,Alzheimer Center Limburg,Maastricht University Medical Center+,Maastricht,the Netherlands.
authors.forename: Deliane
authors.initials: D
authors.lastname: van Vliet
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
authors.affiliation: Alzheimer Center and Department of Neurology,Amsterdam,the Netherlands.
authors.forename: Yolande A
authors.initials: YA
authors.lastname: Pijnenburg
authors.affiliation: Alzheimer Centre Nijmegen,Centre for Quality of Care Research,Nijmegen,the Netherlands.
authors.forename: Myrra J F J
authors.initials: MJ
authors.lastname: Vernooij-Dassen
authors.affiliation: Department of Primary and Community Care,Centre for Family Medicine,Geriatric Care and Public Health,Radboud University Nijmegen,Medical Centre,Nijmegen,the Netherlands.
authors.forename: Raymond T C M
authors.initials: RT
authors.lastname: Koopmans
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D017668:Age of Onset; D001526:Behavioral Symptoms / Q000175:diagnosis / Q000188:drug therapy / Q000209:etiology; D017028:Caregivers / Q000523:psychology; D003704:Dementia / Q000175:diagnosis / Q000453:epidemiology / Q000209:etiology / Q000523:psychology; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D057187:Independent Living / Q000523:psychology; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009426:Netherlands / Q000453:epidemiology; D011569:Psychiatric Status Rating Scales; D012720:Severity of Illness Index; D012944:Social Support