Evidence map›Paper›PMID 41214585›Full record

ArticleBMC geriatrics2025

Needs of key stakeholders to make advance care plans and advance directives for people with dementia: a scoping review.

Rasita Vinay, Andrea Ferrario, Sophie Gloeckler, Nikola Biller-Andorno

Abstract readScoping Review
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

4 authors.

Rasita VinayCentre for Digital Health Interventions, Department of Management, Technology and Economics, ETH Zurich, Zurich, Switzerland. rvinay@ethz.ch.
Andrea FerrarioInstitute of Biomedical Ethics and History of Medicine, University of Zurich, Zurich, Switzerland.
Sophie GloecklerInstitute of Biomedical Ethics and History of Medicine, University of Zurich, Zurich, Switzerland.
Nikola Biller-AndornoInstitute of Biomedical Ethics and History of Medicine, University of Zurich, Zurich, Switzerland.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAdvance care planning (ACP) and advance directives (AD) are tools for supporting person-centered decision-making. In dementia care, the progression of cognitive decline, complex family dynamics and variability in healthcare systems pose unique challenges to effective ACP/AD implementation for people with dementia (PWD).

methodsWe conducted a scoping review of the literature related to ACP/AD in dementia care between 2014 and 2024. Studies were screened and thematically analyzed to identify current approaches, gaps and recommendations for dementia-specific ACP/AD. We identified key stakeholders involved in decision-making and highlighted procedural components for ACP/AD according to stakeholder groups.

resultsForty studies were included. Key stakeholders included healthcare professionals (HCPs); family members and caregivers; PWD; dyads (PWD and their caregivers); the broader public; policymakers; and researchers. Prominent findings included: the role and training of HCPs; educational and decision-support needs; early and ongoing engagement of PWD; development and evaluation of dementia-specific tools; ethical and procedural challenges in end-of-life decision-making; and the importance of outreach and cultural sensitivity. Promising interventions include structured communication models, psychoeducational programs and tools, although few have been fully adapted for dementia.

conclusionDementia-specific ACP/AD require a relational, flexible and ethically grounded approach that evolves with the individual’s condition. While ACP/AD should reflect the autonomous preferences of the PWD, during late-stage dementia, shared decision-making becomes central to providing care that aligns with the person’s goals and preferences. Future research should focus on inclusive tools and training; timing and process facilitation; and public health strategies to improve access and equity.

Indexed as

Advance Care PlanningAdvance DirectivesDementiaStakeholder ParticipationCaregiversDecision MakingHumansAdvance care planningAdvance directivesDecision-makingDementiaPublic health

Identifiers

PMID41214585
PMCPMC12599080

What OpenQuestion holds

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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.