Evidence map›Paper›PMID 28922625›Full record

ArticlePalliative medicine2018

Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life.

Elizabeth L Sampson, Bridget Candy, Sarah Davis, Anna Buylova Gola, Jane Harrington, Michael King, Nuriye Kupeli, Gerry Leavey, Kirsten Moore, Irwin Nazareth and 3 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Palliative medicine, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 74 papers, 11 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
74citing papers in PubMed, 11 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

74 citing papers in PubMed, 11 syntheses or guidelines pooled it.

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  9. Enteral tube feeding for people with severe dementia.The Cochrane database of systematic reviews · 2021
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14 more citing papers are in PubMed but not listed here.

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

13 authors.

Elizabeth L Sampson1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Bridget Candy1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Sarah Davis1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Anna Buylova Gola1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Jane Harrington1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Michael King3 Division of Psychiatry, University College London, London, UK.
Nuriye Kupeli1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Gerry Leavey4 The Bamford Centre for Mental Health and Wellbeing, Ulster University, Coleraine, UK.
Kirsten Moore1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Irwin Nazareth5 Department of Primary Care and Population Health, University College London, London, UK.
Rumana Z Omar6 Department of Statistical Science, University College London, London, UK.
Victoria Vickerstaff1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Louise Jones1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.

Funding

Marie Curie MCCC-FCO-11-UMarie Curie MCCC-FPO-16-UMarie Curie MCCC-FPR-11-U
6 · The paper itself

Abstract

backgroundIncreasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care.

aimsTo describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia.

design9-month prospective cohort study. SETTING AND

participantsGreater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes.

main outcome measuresAt study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale).

resultsOf 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had 'do not resuscitate' statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common.

conclusionPeople with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life.

Indexed as

Aged, 80 and overCohort StudiesDementiaEnglandFemaleHumansMalePalliative CarePatient Acceptance of Health CareProspective StudiesQuality of LifeSurveys and QuestionnairesSymptom AssessmentTerminal Carebehavioural symptomsDementiapainpalliative careprimary healthcarepsychomotor agitationquality of healthcareresidential facilitiesresource allocation

Identifiers

PMID28922625
PMCPMC5987852

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

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.