title: Unmet needs and health-related quality of life in young-onset dementia.
abstract: OBJECTIVE
  Young-onset dementia (YOD) causes specific challenges and issues that are likely to affect health-related quality of life (HRQOL). This study explored patient and caregiver HRQOL and its association with unmet needs in YOD.
  
  
  METHODS
  A cross-sectional design was used to study 215 community-dwelling YOD patients and their primary caregivers. Multiple linear regression analyses were performed to determine the relationship between unmet needs assessed with the Camberwell Assessment of Need for the Elderly scale and patient and caregiver HRQOL, controlling for other variables such as demographic characteristics, patient functional status, neuropsychiatric symptoms, and caregiver sense of competence.
  
  
  RESULTS
  Patient HRQOL was not associated with unmet needs. However, we found that the unmet needs of both patient and caregiver were related to several domains of caregiver HRQOL.
  
  
  CONCLUSIONS
  This study shows that patient and caregiver unmet needs are related to caregiver HRQOL in YOD. However, the relationship between HRQOL and unmet needs is complex. The assessment of unmet needs within the context of HRQOL seems to be an important prerequisite for personalizing care in YOD. Adjusting supportive services to match the individual needs and preferences of these young patients and their caregivers is likely to enhance their quality of life.
authors.affiliation: Florence, Mariahoeve, Centre for Specialised Care in Early Onset Dementia, The Hague, the Netherlands; Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands. Electronic address: c.bakker@elg.umcn.nl.
authors.forename: Christian
authors.initials: C
authors.lastname: Bakker
authors.affiliation: Alzheimer Centre Limburg, Department of Psychiatry and Neuropsychology, Maastricht University, Maastricht, the Netherlands.
authors.forename: Marjolein E
authors.initials: ME
authors.lastname: de Vugt
authors.affiliation: Alzheimer Centre Limburg, Department of Psychiatry and Neuropsychology, Maastricht University, Maastricht, the Netherlands.
authors.forename: Deliane
authors.initials: D
authors.lastname: van Vliet
authors.affiliation: Alzheimer Centre Limburg, Department of Psychiatry and Neuropsychology, Maastricht University, Maastricht, the Netherlands.
authors.forename: Frans
authors.initials: F
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: Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands; Alzheimer Centre Nijmegen, Centre for Quality of Care Research, Nijmegen, the Netherlands; IQ Healthcare, Kalorama Foundation, 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: D000328:Adult; D017668:Age of Onset; D000368:Aged; D000544:Alzheimer Disease / Q000523:psychology / Q000628:therapy; D017028:Caregivers / Q000706:statistics & numerical data; D003430:Cross-Sectional Studies; D003704:Dementia / Q000523:psychology / Q000628:therapy*; D005260:Female; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D011788:Quality of Life / Q000523:psychology; D012720:Severity of Illness Index
keywords: Alzheimer disease; caregivers; quality of life; young-onset dementia