Evidence map›Paper›PMID 42137786›Full record

ArticlePalliative care and social practice2026

Increasing number of unmanaged distressing symptoms in people living with dementia associated with family carer burden and distress following an unplanned hospital admission: A longitudinal cohort study.

Sophie Crawley, Victoria Vickerstaff, Clare Ellis-Smith, Charlotte Kenten, Emel Yorganci, Catherine J Evans, Elizabeth L Sampson, Nuriye Kupeli

Abstract read
In one paragraph

Article in Palliative care and social practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0cells of the map it votes in
0citing papers in PubMed
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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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

8 authors.

Sophie CrawleyMarie Curie Palliative Care Research Department, Division of Psychiatry, University College London, UK.ORCID https://orcid.org/0000-0001-5714-0563
Victoria VickerstaffCentre for Evaluation and Methods, Wolfson Institute of Population Health, Queen Mary University of London, UK.
Clare Ellis-SmithCicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, King's College London, UK.ORCID https://orcid.org/0000-0003-3453-3203
Charlotte KentenCentre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, UK.ORCID https://orcid.org/0000-0001-7012-7347
Emel YorganciCicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, King's College London, UK.ORCID https://orcid.org/0000-0003-2057-1428
Catherine J EvansCicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, King's College London, UK.
Elizabeth L SampsonCentre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, UK.
Nuriye KupeliMarie Curie Palliative Care Research Department, Division of Psychiatry, University College London, UK.ORCID https://orcid.org/0000-0001-6511-412X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: People living with dementia (PLWD) often have high symptom burden, exacerbated by comorbidities and experience unplanned hospital admissions that increase towards the end of life. Unmanaged symptoms and unplanned hospital admissions are distressing for the person living with dementia and family carers and expensive for the healthcare system. Objective: To explore the relationship between unmanaged symptoms of PLWD following an unplanned hospital admission and carer health and wellbeing outcomes over time. Design: Prospective longitudinal cohort study. Methods: Physical, psychosocial and spiritual symptoms of the PLWD and carer burden, distress and pre-death grief were assessed over 12 months following an unplanned hospital admission. Descriptive statistics and multilevel linear regression analyses were used to examine the relationships between PLWD unmanaged symptoms and carer outcomes. Results: A total of 51 carers of PLWD with a mean age of 59.6 participated. Carer burden was significantly associated with increasing PLWD unmanaged symptoms (coefficient = 0.07, 95% CI [0.03, 0.12], Conclusion: Identifying and addressing symptoms in PLWD following an unplanned hospital admission is essential in enhancing the wellbeing of PLWD and carers. Hospital discharge planning should incorporate carer perspectives, provide support for carer burden and distress, and ensure continuity of care to reduce symptoms and improve outcomes for both PLWD and their carers.

Indexed as

dementiaend of lifefamily carershospitallongitudinalsymptoms

Identifiers

PMID42137786
PMCPMC13167373

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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.