Evidence map›Paper›PMID 34137314›Full record

SynthesisPalliative medicine2021

Defining end of life in dementia: A systematic review.

Bria Browne, Nuriye Kupeli, Kirsten J Moore, Elizabeth L Sampson, Nathan Davies

Registry-linked trialOpen access · hybridAbstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in Palliative medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06032091 (Digital Phenotyping for Changes in Activity at the End of Life in People With Dementia), which is not on this map. Cited by 48 papers, 9 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
48citing papers in PubMed, 9 pooled it
12.4field-weighted citation impact, top 1% of its field
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.

NCT06032091 unknown statusnot on this mapstarted 2023, after this paper: background citation

Digital Phenotyping for Changes in Activity at the End of Life in People With Dementia: an Observational Trial Based on Sensing Technology

TypeobservationalSponsorUniversity of BergenRan2023 to 2026Enrolled50ConditionsDementiaArmsNo intervention
3 · Its place in the literature

Who cites it

48 citing papers in PubMed, 9 syntheses or guidelines pooled it, 88 citations in OpenAlex.

  1. Pooled it
  2. Delivering Palliative Care in Mental Health Nursing Settings: A Systematic Review.Journal of psychiatric and mental health nursing · 2026
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  9. Enteral tube feeding for people with severe dementia.The Cochrane database of systematic reviews · 2021
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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

5 authors at 3 institutions in 2 countries.

Bria BrowneCentre for Ageing Population Studies, Research Department of Primary Care and Population Health, University College London, London, UK.ORCID https://orcid.org/0000-0003-4346-5222
Nuriye KupeliMarie Curie Palliative Care Research Department, University College London, London, UK.ORCID https://orcid.org/0000-0001-6511-412X
Kirsten J MooreMarie Curie Palliative Care Research Department, University College London, London, UK.ORCID https://orcid.org/0000-0002-8631-3213
Elizabeth L SampsonMarie Curie Palliative Care Research Department, University College London, London, UK.
Nathan DaviesCentre for Ageing Population Studies, Research Department of Primary Care and Population Health, University College London, London, UK.
University College London · GBBarnet Enfield and Haringey Mental Health Trust · GBNational Ageing Research Institute · AU

Funding

Marie Curie MCCC-FCO-11-U
6 · The paper itself

Abstract

backgroundDementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia.

aimTo identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia.

designSystematic review and narrative synthesis. DATA SOURCES: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia.

resultsThirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life.

conclusionEnd-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

Indexed as

DementiaHospice CareTerminal CareCaregiversDeathHumansDementiaend of lifepalliative caresystematic reviewterminal care

Identifiers

PMID34137314
PMCPMC8637358
OpenAlexW3168036595

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

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.