Evidence map›Paper›PMID 41430649›Full record

ArticleBMC geriatrics2025

Unraveling impaired awareness: experiences of people with dementia, Huntington's disease and Korsakoff's syndrome, and their informal caregivers.

Hester Fidder, Esther de Groot, Marike E de Boer, Marina R Ekkel, Ruth B Veenhuizen, Martin Smalbrugge, Anouk M van Loon

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PubMed Full text at PMC Publisher
In one paragraph

Article in BMC geriatrics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

7 authors.

Hester FidderDepartment of Medicine for Older People, Amsterdam UMC, Postbus 7057, Location Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, 1007 MB, The Netherlands. h.fidder@amsterdamumc.nl.
Esther de GrootDepartment of Medicine for Older People, Amsterdam UMC, Postbus 7057, Location Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, 1007 MB, The Netherlands.
Marike E de BoerDepartment of Medicine for Older People, Amsterdam UMC, Postbus 7057, Location Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, 1007 MB, The Netherlands.
Marina R EkkelDepartment of Medicine for Older People, Amsterdam UMC, Postbus 7057, Location Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, 1007 MB, The Netherlands.
Ruth B VeenhuizenDepartment of Medicine for Older People, Amsterdam UMC, Postbus 7057, Location Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, 1007 MB, The Netherlands.
Martin SmalbruggeDepartment of Medicine for Older People, Amsterdam UMC, Postbus 7057, Location Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, 1007 MB, The Netherlands.
Anouk M van LoonDepartment of Medicine for Older People, Amsterdam UMC, Postbus 7057, Location Vrije Universiteit Amsterdam, De Boelelaan 1117, Amsterdam, 1007 MB, The Netherlands.

Funding

This research was funded by the Netherlands Organization for Health Research and Development (ZonMw, grant no. 839160004).
6 · The paper itself

Abstract

backgroundImpaired awareness occurs in people with dementia (DEM; Alzheimer’s disease (AD), including mixed AD/vascular), Huntington’s disease (HD) and Korsakoff’s syndrome (KS). We explored the experiences of these people and their informal caregivers, to gain a better understanding of this phenomenon.

methodsWe conducted 28 in-depth, semi-structured interviews with 14 dyads, consisting of people with DEM, HD, or KS who had impaired awareness, and their informal caregivers. Topics discussed included impaired awareness of diagnosis and functioning, as well as the consequences of impaired awareness. We applied inductive thematic content analysis.

resultsWe identified four interconnected themes: (1) how impaired awareness is expressed by people with DEM, HD, or KS; (2) how caregivers perceive impaired awareness; (3) how caregivers respond to it; and (4) its consequences. These themes applied to four domains of awareness (diagnosis, physical and cognitive functioning, social and behavioral functioning, and risks in daily activities). Generally, people with DEM, HD or KS experienced no problems arising from impaired awareness, whereas caregivers described substantial challenges. Despite heterogeneity within individuals and domains of functioning, we observed no experiences specific to any disease group (DEM, HD or KS).

conclusionsOur findings offer insight into the diverging experiences of people with impaired awareness and their caregivers. Education about impaired awareness and managing its consequences may benefit caregivers and improve care.

Indexed as

AwarenessCaregiversDementiaHuntington DiseaseKorsakoff SyndromeAgedAged, 80 and overFemaleHumansMaleMiddle AgedAlcohol-Related cognitive disordersAnosognosiaAwarenessDementiaHuntington’s diseaseInformal caregiversInsightKorsakoff’s syndromeQualitative research

Identifiers

PMID41430649
PMCPMC12805700

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Registered trials

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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.