title: Quality of life in young onset dementia: an updated systematic review.
abstract: BACKGROUND
  Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers.
  
  
  METHODS
  This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL.
  
  
  RESULTS
  People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective.
  
  
  CONCLUSIONS
  Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.
authors.affiliation: Instituto de Psiquiatria, Universidade Federal do Rio de Janeiro, Rio de Janeiro, RJ, Brazil.
authors.forename: Maria Alice Tourinho
authors.initials: MA
authors.lastname: Baptista
authors.affiliation: Instituto de Psiquiatria, Universidade Federal do Rio de Janeiro, Rio de Janeiro, RJ, Brazil.
authors.forename: Raquel Luiza
authors.initials: RL
authors.lastname: Santos
authors.affiliation: Instituto de Psiquiatria, Universidade Federal do Rio de Janeiro, Rio de Janeiro, RJ, Brazil.
authors.forename: Nathália
authors.initials: N
authors.lastname: Kimura
authors.affiliation: Instituto de Psiquiatria, Universidade Federal do Rio de Janeiro, Rio de Janeiro, RJ, Brazil.
authors.forename: Isabel Barbeito
authors.initials: IB
authors.lastname: Lacerda
authors.affiliation: Norwegian Centre for Aging and Health, Tønsberg, Norway.
authors.forename: Aud
authors.initials: A
authors.lastname: Johannenssen
authors.affiliation: Norwegian Centre for Aging and Health, Tønsberg, Norway.
authors.forename: Maria Lage
authors.initials: ML
authors.lastname: Barca
authors.affiliation: Norwegian Centre for Aging and Health, Tønsberg, Norway.
authors.forename: Knut
authors.initials: K
authors.lastname: Engedal
authors.affiliation: Instituto de Psiquiatria, Universidade Federal do Rio de Janeiro, Rio de Janeiro, RJ, Brazil.
authors.forename: Marcia Cristina Nascimento
authors.initials: MC
authors.lastname: Dourado
mesh_terms: D017668:Age of Onset; D003704:Dementia / Q000523:psychology*; D006801:Humans; D011788:Quality of Life