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28/100

✓ Peer-reviewed alzhub usefulness score 28 out of 100. End-of-life care

Topic: Risk, prevention and care in population studies

Background Advance 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). Methods We 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. Results Forty 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. Conclusion Dementia-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.

Cite this study APA, Vancouver, BibTeX · download .bib or .ris

APA 7th

Vinay, Rasita, Ferrario, Andrea, Gloeckler, Sophie, et al. (2025). Needs of key stakeholders to make advance care plans and advance directives for people with dementia: a scoping review. Repository for Publications and Research Data (ETH Zurich). https://doi.org/10.3929/ethz-c-000787635

Vancouver

Vinay, Rasita, Ferrario, Andrea, Gloeckler, Sophie, et al. Needs of key stakeholders to make advance care plans and advance directives for people with dementia: a scoping review. Repository for Publications and Research Data (ETH Zurich). 2025. doi:10.3929/ethz-c-000787635.

BibTeX

@article{vinay2025-967c4340,
  author  = {Vinay and Rasita and Ferrario and Andrea and Gloeckler and Sophie and Biller-Andorno and Nikola},
  title   = {{Needs of key stakeholders to make advance care plans and advance directives for people with dementia: a scoping review}},
  journal = {Repository for Publications and Research Data (ETH Zurich)},
  year    = {2025},
  doi     = {10.3929/ethz-c-000787635},
  url     = {https://doi.org/10.3929/ethz-c-000787635}
}

Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. The record names 8 authors; APA and Vancouver show the first six, BibTeX and the downloads carry all of them. Check the citation against the original before you use it.

Key findings

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.
Conclusion Dementia-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.

Why it matters

This scoping review of literature from 2014 to 2024 identified stakeholders including healthcare professionals, family caregivers, people with dementia, the public, policymakers, and researchers. It found promising interventions such as structured communication models and psychoeducational programs, though few have been fully adapted for dementia.

Study details

Evidence strengthLow

How this study scored 28/100

Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomized / blinded because the record does not state it. We have no data on journal's citation record, senior author's track record and institution's track record, so those were left out: it earned 25 of the 89 points we could judge it on, which is 28 out of 100.

Component	Points	Why
Journal tier	7 / 10	Tier 3 — peer-reviewed journal (Repository for Publications and Research Data (ETH Zurich))
Journal's citation record	— / 4	No journal record from OpenAlex — left out of this score
Study design	0 / 12	No study design recorded — scores zero, not guessed (not stated in the record — scored 0)
Strength of evidence	1 / 5	Rated “low” in our summary
Peer-review validation	10 / 10	Peer-reviewed. Published as an article in a named peer-reviewed journal.
How recent	4 / 5	2025 — within 3 year(s) of the newest study here
Sample size	0 / 4	Participant count not stated — scores zero (not stated in the record — scored 0)
Effect reported	0 / 3	No effect size reported — scores zero (not stated in the record — scored 0)
Studied in people	0 / 3	Not stated whether this was studied in people — scores zero (not stated in the record — scored 0)
Randomized / blinded	0 / 2	No randomization or blinding stated — scores zero (not stated in the record — scored 0)
Times cited	0 / 7	Cited 0 times (OpenAlex, 2026-10-10)
Citations per year	0 / 5	0.0 citations a year over 3 year(s) since 2025
Impact for its field and year	0 / 6	Cited 0.0× the average for papers of its field and year (OpenAlex FWCI)
Cited by studies here	0 / 6	No other study in this library cites it
Still being cited	0 / 4	Cited 0 times in 2024–2026 (2026 still in progress; OpenAlex)
Senior author's track record	— / 4	Senior author's record not available — left out of this score
Institution's track record	— / 3	No institution listed in OpenAlex — left out of this score
Multicenter collaboration	0 / 3	OpenAlex lists 0 institution(s) in 0 countries — scores zero (affiliation lists can be incomplete)
Indexed in PubMed	1 / 2	Not in PubMed, but has a DOI
Free to read	2 / 2	Free to read
Points	25 / 89	Scored on 17 of 20 parts. We have no data for the rest, so they are left out: 25 of the 89 points we could judge it on is 28 out of 100.
Total	28 / 100	—

What each of these 20 components measures, and what this score is not →

Read the original

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