title: Proxy rated quality of life of care home residents with dementia: a systematic review.
abstract: Quality of life (QoL) is an important outcome for people with dementia living in care homes but usually needs to be rated by a proxy. We do not know if relative or paid carer proxy reports differ. We conducted the first systematic review and meta-analysis of data investigating whether and how these proxy reports of QoL differ.
  
  
  
  We searched four databases: Medline, Embase, PsychInfo, and CINAHL in October 2015 with the terms: dementia, QoL, proxy, and care home. Included studies either compared proxy QoL ratings or investigated the factors associated with them. We meta-analyzed data comparing staff and family proxy rated QoL.
  
  
  
  We included 17/105 papers identified. We found no difference between global proxy ratings of QoL (n = 1,290; pooled effect size 0.06 (95% CI = -0.08 to 0.19)). Studies investigating factors associated with ratings (n = 3,537) found family and staff ratings correlated with the resident's physical and mental health. Staff who were more distressed rated resident QoL lower. Relatives rated it lower when the resident had lived in the care home for longer, when they observed more restraint, or contributed more to fees.
  
  
  
  Relatives and staff proxy QoL ratings share a clear relationship to resident health and overall ratings were similar. Rater-specific factors were, however, also associated with scores. Understanding why different raters consider the QoL of the same person differently is an important consideration when evaluating the meaning of proxy rated QoL. Proxy raters' backgrounds may affect their rating of QoL.
authors.affiliation: Division of Psychiatry,University College London (UCL),6Floor Maple House,W1T 7NF,London,UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Robertson
authors.affiliation: Division of Psychiatry,University College London (UCL),6Floor Maple House,W1T 7NF,London,UK.
authors.forename: Claudia
authors.initials: C
authors.lastname: Cooper
authors.affiliation: Division of Psychiatry,University College London (UCL),6Floor Maple House,W1T 7NF,London,UK.
authors.forename: Juanita
authors.initials: J
authors.lastname: Hoe
authors.affiliation: Division of Psychiatry,University College London (UCL),6Floor Maple House,W1T 7NF,London,UK.
authors.forename: Olivia
authors.initials: O
authors.lastname: Hamilton
authors.affiliation: Division of Psychiatry,University College London (UCL),6Floor Maple House,W1T 7NF,London,UK.
authors.forename: Aisling
authors.initials: A
authors.lastname: Stringer
authors.affiliation: Division of Psychiatry,University College London (UCL),6Floor Maple House,W1T 7NF,London,UK.
authors.forename: Gill
authors.initials: G
authors.lastname: Livingston
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D017028:Caregivers; D003704:Dementia / Q000523:psychology*; D006801:Humans; D009735:Nursing Homes / Q000592:standards; D019727:Proxy; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life / Q000523:psychology*; D012720:Severity of Illness Index
keywords: carers; dementia; nursing homes; quality of life