Evidence map›Paper›PMID 40382778›Full record

ArticleAging & mental health2025

'Dementia has got two faces': grief as an experience of holding on and letting go for people living with primary progressive aphasia and posterior cortical atrophy.

Claire Waddington, Henry Clements, Sebastian Crutch, Martina Davis, Jonathan Glenister, Emma Harding, Erin Hope Thompson, Jill Walton, Joshua Stott

Abstract read
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In one paragraph

Article in Aging & mental health, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–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

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

9 authors.

Claire WaddingtonDementia Research Centre, Institute of Neurology, University College London, London, UK.
Henry ClementsClinical Education and Health Psychology, University College London, London, UK.
Sebastian CrutchDementia Research Centre, Institute of Neurology, University College London, London, UK.
Martina DavisRare Dementia Support, Dementia Research Centre, Institute of Neurology, University College London, London, UK.
Jonathan GlenisterRare Dementia Support, Dementia Research Centre, Institute of Neurology, University College London, London, UK.
Emma HardingDementia Research Centre, Institute of Neurology, University College London, London, UK.
Erin Hope ThompsonThe Loss Foundation, UK.
Jill WaltonDementia Research Centre, Institute of Neurology, University College London, London, UK.
Joshua StottADAPT Lab, Clinical Education and Health Psychology, University College London, London, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundresearch on grief in people with primary progressive aphasia (PPA) and posterior cortical atrophy (PCA), is limited, despite the unique challenges these individuals face due to lack of understanding of their condition, younger age at onset and atypical symptom profile. The current study explores the losses people living with PPA or PCA experience and what helps to navigate these losses.

methodsin-depth semi-structured research conversations were conducted with 14 participants (

resultsthe impact and navigation of loss is reflected across five interconnecting themes: what I have lost, am losing and will lose, shared and unique sense of loss, balance between what is lost and what remains, changes in relationships and what helps in navigating loss.

conclusionsthe dynamic interplay between what participants had lost and what they held on to carries significant implications for the design and delivery of support. These findings will be used alongside existing grief theory and interventional frameworks to develop a psychosocial intervention for people living with dementia.

Indexed as

Aphasia, Primary ProgressiveCerebral CortexDementiaGriefAgedAged, 80 and overAtrophyFemaleHumansMaleMiddle AgedQualitative Researchdementiagriefposterior cortical atrophyprimary progressive aphasiaQualitative

Identifiers

PMID40382778
PMCPMC12309460

What OpenQuestion holds

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LicenceCC BY
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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.