Evidence map›Paper›PMID 40185344›Full record

ArticleJournal of pain and symptom management2025

Care Decisions in the Hospital: Challenges for Family Members of Hospitalized Persons With Dementia.

Rashmi K Sharma, Elizabeth Dzeng, Janaki M O'Brien, Amy C Thomas, Anna Ungar, Elizabeth L Nielsen, Ruth A Engelberg

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of pain and symptom management, 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.

Rashmi K SharmaDivision of General Internal Medicine (R.K.S.), University of Washington, Seattle, Washington, USA; Cambia Palliative Care Center of Excellence at UW Medicine (R.K.S., J.M.O., A.U., E.L.N., R.A.E.), University of Washington, Seattle, Washington, USA. Electronic address: rasharma@uw.edu.
Elizabeth DzengDivision of Hospital Medicine (E.D.), University of California San Francisco, San Francisco, California, USA; Cicely Saunders Institute (E.D.), King's College London, London, United Kingdom.
Janaki M O'BrienCambia Palliative Care Center of Excellence at UW Medicine (R.K.S., J.M.O., A.U., E.L.N., R.A.E.), University of Washington, Seattle, Washington, USA; Division of Pulmonary (J.M.O., A.U., E.L.N., R.A.E.), Critical Care and Sleep Medicine, University of Washington, Seattle, Washington, USA.
Amy C ThomasDivision of Geriatrics and Gerontology (A.C.T.), University of Washington, Seattle, Washington, USA.
Anna UngarCambia Palliative Care Center of Excellence at UW Medicine (R.K.S., J.M.O., A.U., E.L.N., R.A.E.), University of Washington, Seattle, Washington, USA; Division of Pulmonary (J.M.O., A.U., E.L.N., R.A.E.), Critical Care and Sleep Medicine, University of Washington, Seattle, Washington, USA.
Elizabeth L NielsenCambia Palliative Care Center of Excellence at UW Medicine (R.K.S., J.M.O., A.U., E.L.N., R.A.E.), University of Washington, Seattle, Washington, USA; Division of Pulmonary (J.M.O., A.U., E.L.N., R.A.E.), Critical Care and Sleep Medicine, University of Washington, Seattle, Washington, USA.
Ruth A EngelbergCambia Palliative Care Center of Excellence at UW Medicine (R.K.S., J.M.O., A.U., E.L.N., R.A.E.), University of Washington, Seattle, Washington, USA; Division of Pulmonary (J.M.O., A.U., E.L.N., R.A.E.), Critical Care and Sleep Medicine, University of Washington, Seattle, Washington, USA.

Funding

Identifying opportunities to improve shared decision-making about intensity of care for patients with Alzheimer's disease and related dementiasR01NR018161 · NINR · UNIVERSITY OF WASHINGTON · PI CREUTZFELDT, CLAIRE JOHANNA, ENGELBERG, RUTH ANN · 2018 to 2022
$3.7M
NINR NIH HHS R01 NR018161
6 · The paper itself

Abstract

contextFamily members of hospitalized persons living with dementia (PLWD) often face complex, high-stakes decisions and experience significant psychological distress. Prior studies of hospitalized patients have focused on the ethical, intrapersonal, and communication-related challenges specific to surrogate decision-making, but few have explored challenges specific to families of PLWD.

objectivesTo understand challenges faced by family members of hospitalized older PLWD as they navigate care decisions.

methodsThis is a qualitative study of family members of hospitalized PLWD from February to December 2020. Hospitalized patients >50 years old with an ICD-coded diagnosis of dementia were identified from the EHR along with at least one family member, and approached for a semistructured interview about decision-making experiences. Interviews were audio recorded, transcribed, and coded by seven investigators using an inductive and constant comparative approach.

resultsThirty family members completed interviews for 26 unique PLWD. Mean participant age was 62.6 years; 66.7% were female and most identified as the PLWD's adult child (53.3%) or spouse (26.7%). The following themes emerged: 1) determining the PLWD's quality of life, 2) navigating uncertainty in the context of dementia and acute hospitalization, 3) translating PLWD's preferences into high-stakes decisions within the context of progressive cognitive impairment, and 4) unique decision-making challenges related to the early phase of the COVID-19 pandemic.

conclusionFamily members of hospitalized PLWD faced dementia-specific challenges when making care decisions. Interventions that account for these challenges are needed to better support family members of hospitalized PLWD as they navigate these decisions.

Indexed as

Decision MakingDementiaFamilyHospitalizationAgedAged, 80 and overCaregiversCOVID-19FemaleHumansMaleMiddle AgedQualitative Researchacute carecaregiverDecision-makingdementiaolder adultspersons living with dementia

Identifiers

PMID40185344
PMCPMC12148684

What OpenQuestion holds

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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.