Evidence map›Paper›PMID 37743478›Full record

ArticleTrials2023

Palliative care for persons with late-stage Alzheimer's and related dementias and their caregivers: protocol for a randomized clinical trial.

M Toles, C Kistler, F C Lin, M Lynch, K Wessell, S L Mitchell, L C Hanson

Erratum issued Registry-linked trialOpen access · goldAbstract readClinical Trial Protocol
In one paragraph

Article in Trials, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. It is linked to trial NCT04948866 (Palliative Care for Persons With Late-stage Alzheimer's and Related Dementias and Their Caregivers), which is not on this map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
1.7field-weighted citation impact, top 15% of its field
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.

NCT04948866 nacompletednot on this map

Palliative Care for Persons With Late-stage Alzheimer's and Related Dementias and Their Caregivers

TypeinterventionalSponsorUniversity of North Carolina, Chapel HillRan2021 to 2025Enrolled884ConditionsDementia, Dementia, Vascular, Dementia With Lewy Bodies, Dementia FrontalArmsADRD-PC Program
3 · Its place in the literature

Who cites it

6 citing papers in PubMed, 6 citations in OpenAlex.

  1. Stage of Disease Among Hospitalized Persons Living With Dementia: A Multisite Study.Journal of the American Medical Directors Association · 2026
    Article
  2. Article
  3. Predicting hospice eligibility among dementia patients using language models.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Article
  4. Article
  5. Article
  6. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

7 authors at 2 institutions in 1 country.

M TolesSchool of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. mtoles@email.unc.edu.
C KistlerDepartment of Family Medicine and Palliative Care Program, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
F C LinDepartment of Biostatistics, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
M LynchCecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
K WessellCecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
S L MitchellHebrew SeniorLife, Hinda and Arthur Marcus Institute for Aging Research, and Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, USA.
L C HansonDivision of Geriatrics and Palliative Care Program, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
University of North Carolina at Chapel Hill · USHebrew SeniorLife · US

Funding

Palliative Care Research Cooperative Group (PCRC): Refinement and ExpansionU2CNR014637 · NINR · UNIVERSITY OF COLORADO DENVER · PI RITCHIE, CHRISTINE S · 2018 to 2022
$8.6M
Palliative Care for Persons with Late-stage Alzheimer's and Related Dementias and their Caregivers: a Randomized Clinical TrialR01AG065394 · NIA · UNIV OF NORTH CAROLINA CHAPEL HILL · PI HANSON, LAURA C · 2020 to 2024
$4.5M
NIA NIH HHS 1R01AG065394-01A1NIA NIH HHS R01 AG065394NINR NIH HHS U2C NR014637
6 · The paper itself

Abstract

backgroundLimited access to specialized palliative care exposes persons with late-stage Alzheimer's disease and related dementias (ADRD) to burdensome treatment and unnecessary hospitalization and their caregivers to avoidable strain and financial burden. Addressing this unmet need, the purpose of this study was to conduct a randomized clinical trial (RCT) of the ADRD-Palliative Care (ADRD-PC) program.

methodsThe study will use a multisite, RCT design and will be set in five geographically diverse US hospitals. Lead investigators and outcome assessors will be masked. The study will use 1:1 randomization of patient-caregiver dyads, and sites will enroll N = 424 dyads of hospitalized patients with late-stage ADRD with their family caregivers. Intervention dyads will receive the ADRD-PC program of (1) dementia-specific palliative care, (2) standardized caregiver education, and (3) transitional care. Control dyads will receive publicly available educational material on dementia caregiving. Outcomes will be measured at 30 days (interim) and 60 days post-discharge. The primary outcome will be 60-day hospital transfers, defined as visits to an emergency department or hospitalization ascertained from health record reviews and caregiver interviews (aim 1). Secondary patient-centered outcomes, ascertained from 30- and 60-day health record reviews and caregiver telephone interviews, will be symptom treatment, symptom control, use of community palliative care or hospice, and new nursing home transitions (aim 2). Secondary caregiver-centered outcomes will be communication about prognosis and goals of care, shared decision-making about hospitalization and other treatments, and caregiver distress (aim 3). Analyses will use intention-to-treat, and pre-specified exploratory analyses will examine the effects of sex as a biologic variable and the GDS stage. DISCUSSION: The study results will determine the efficacy of an intervention that addresses the extraordinary public health impact of late-stage ADRD and suffering due to symptom distress, burdensome treatments, and caregiver strain. While many caregivers prioritize comfort in late-stage ADRD, shared decision-making is rare. Hospitalization creates an opportunity for dementia-specific palliative care, and the study findings will inform care redesign to advance comprehensive dementia-specific palliative care plus transitional care.

trial registrationClinicalTrials.gov NCT04948866. Registered on July 2, 2021.

Indexed as

Alzheimer DiseasePalliative CareCaregiversCommunicationHospitalizationHumansRandomized Controlled Trials as TopicDementiaPalliative careRandomized and controlled trialTransitional care

Identifiers

PMID37743478
PMCPMC10518941
OpenAlexW4387001872

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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.