Evidence map›Paper›PMID 30691541›Full record

ArticlePsychological medicine2020

Comparing proxy rated quality of life of people living with dementia in care homes.

S Robertson, C Cooper, J Hoe, K Lord, P Rapaport, L Marston, S Cousins, C G Lyketsos, G Livingston

Abstract readComparative Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Psychological medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

17 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2020
    Trial
  3. Article
  4. Article
  5. Proxy reporting in health: a scoping review of instructions, perspectives, and reporting experiences.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025
    Article
  6. Article
  7. Article
  8. Nursing staff's experiences of how weighted blankets influence resident's in nursing homes expressions of health.International journal of qualitative studies on health and well-being · 2022
    Article
  9. Experiences of Assistive Products and Home Care among Older Clients with and without Dementia in Sweden.International journal of environmental research and public health · 2022
    Article
  10. Article
  11. Article
  12. Feasibility and validity of EQ-5D-5L proxy by nurses in measuring health-related quality of life of nursing home residents.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021
    Article
  13. Article
  14. Article
  15. Article
  16. Review
  17. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

S RobertsonDivision of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
C CooperDivision of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
J HoeDivision of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
K LordDivision of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
P RapaportDivision of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
L MarstonDivision of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
S CousinsDivision of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
C G LyketsosDivision of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
G LivingstonDivision of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.

Funding

'T V ASSESSMENT - MEMORY DISORDERED PATIENTS'P50AG005146 · NIA · JOHNS HOPKINS UNIVERSITY · PI HUGANIR, RICHARD L · 1985 to 2019
$37.6M
Research Education ComponentP30AG066507 · NIA · JOHNS HOPKINS UNIVERSITY · PI Corinne Pettigrew · 2020 to 2026
$29.3M
Department of HealthNIA NIH HHS P30 AG066507NIA NIH HHS P50 AG005146
6 · The paper itself

Abstract

backgroundImproving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes.

methodsWe compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews.

resultsStaff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as 'Poor' (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents' QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia.

conclusionProxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.

Indexed as

Attitude of Health PersonnelAttitude to HealthQuality of LifeAgedAged, 80 and overDementiaEnglandFamilyFemaleHealth PersonnelHumansMaleProxySkilled Nursing FacilitiesCare homecarerdementiafamily carerinstitutionpaid carerproxyquality of life

Identifiers

PMID30691541
PMCPMC6945323

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.