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Needs of key stakeholders to make advance care plans and advance directives for people with dementia: a scoping review
Vinay, Rasita, Ferrario, Andrea, Gloeckler, Sophie, Nikola Biller‐Andorno. Zurich Open Repository and Archive (University of Zurich), 2025-11-10
Topic: Risk, prevention and care in population studies
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. 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. Zurich Open Repository and Archive (University of Zurich). https://doi.org/10.5167/uzh-280711
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. Zurich Open Repository and Archive (University of Zurich). 2025. doi:10.5167/uzh-280711.
BibTeX
@article{vinay2025-52fd61ea,
author = {Vinay and Rasita and Ferrario and Andrea and Gloeckler and Sophie and Biller‐Andorno, Nikola},
title = {{Needs of key stakeholders to make advance care plans and advance directives for people with dementia: a scoping review}},
journal = {Zurich Open Repository and Archive (University of Zurich)},
year = {2025},
doi = {10.5167/uzh-280711},
url = {https://doi.org/10.5167/uzh-280711}
}
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 7 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
- 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.
- 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.
Why it matters
This scoping review of 40 studies identified key stakeholders in advance care planning for people with dementia and found prominent needs around healthcare professional training, education and decision support, early engagement, and dementia-specific tools. It concludes that dementia-specific advance care planning requires a relational, flexible, ethically grounded approach that evolves with the individual's condition.
Study details
- Evidence strengthLow
How this study scored 29/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it. We have no data on journal's citation record and institution's track record, so those were left out: it earned 27 of the 93 points we could judge it on, which is 29 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Zurich Open Repository and Archive (University of 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) |
| Randomised / blinded | 0 / 2 | No randomisation 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 | 2 / 4 | Last-listed author Nikola Biller‐Andorno: h-index 46 (OpenAlex, whole career) |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre 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 | 27 / 93 | Scored on 18 of 20 parts. We have no data for the rest, so they are left out: 27 of the 93 points we could judge it on is 29 out of 100. |
| Total | 29 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.5167/uzh-280711
- Original source →
- Free full text: Zurich Open Repository and Archive (University of Zurich) →
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
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