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Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study
Jenny Theodora van der Steen, Lieve Van den Block, Miharu Nakanishi, Karen Harrison Dening, Deborah Parker, Philip Joseph Larkin, Paola Di Giulio, Jürgen in der Schmitten et al.. Journal of Pain and Symptom Management, 2025-03-01
Topic: Risk, prevention and care in population studies
Thirty constitutive elements of ACP were identified (e.g., 'assess understanding of ACP'). Only five were deemed 'optional.' The panel estimated a median of four conversations could address elements to be addressed at least once. Recommendations included to assume capacity as a principle, conscious of the need to explore its fluctuation, to encourage engaging and playing active roles, and to establish connection and inform and prepare family. There was a consensus to offer ACP around dementia diagnosis, to raise end-of-life issues later, and to personalize ACP with flexibility, providing of information and exploring understanding. The advice of the persons with dementia pointed to a wish for a well-coordinated holistic approach. Consensus was reached, including in areas of ambiguity, to guide ACP in dementia. ACP should be embedded in a nonprescriptive, individualized approach that involves both the person with dementia and their families. Future studies may evaluate trade-offs between optimal ACP and feasible implementation.
Key findings
- Thirty constitutive elements of ACP were identified (e.g., 'assess understanding of ACP').
- Only five were deemed 'optional.' The panel estimated a median of four conversations could address elements to be addressed at least once.
- Recommendations included to assume capacity as a principle, conscious of the need to explore its fluctuation, to encourage engaging and playing active roles, and to establish connection and inform and prepare family.
- There was a consensus to offer ACP around dementia diagnosis, to raise end-of-life issues later, and to personalize ACP with flexibility, providing of information and exploring understanding.
- The advice of the persons with dementia pointed to a wish for a well-coordinated holistic approach.
Why it matters
This 33-country Delphi study reached consensus on 30 constitutive elements of advance care planning in dementia, recommending that it be offered around dementia diagnosis, that end-of-life issues be raised later, and that it be embedded in a nonprescriptive, individualized approach involving both the person with dementia and their families. It provides guidance for care planning, not for treating, curing or preventing Alzheimer's disease.
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Study details
- Evidence strengthLow
How this study scored 49/100
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.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of Pain and Symptom Management) |
| Journal's citation record | 2 / 4 | Journal of Pain and Symptom Management: journal h-index 213 (OpenAlex, 2026-10-29) |
| 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 | 3 / 7 | Cited 19 times (OpenAlex, 2026-10-10) |
| Citations per year | 2 / 5 | 6.3 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 4 / 6 | Cited 16.1× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 2 / 6 | Cited by 6 other studies in this library |
| Still being cited | 2 / 4 | Cited 19 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 3 / 4 | Last-listed author Ida J. Korfage: h-index 53 (OpenAlex, whole career) |
| Institution's track record | 2 / 3 | University of California, San Francisco: institution h-index 1,915 (OpenAlex) |
| Multi-centre collaboration | 3 / 3 | OpenAlex lists 22 institution(s) in 12 countries |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 40032035) |
| Free to read | 2 / 2 | Free to read |
| Total | 49 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.1016/j.jpainsymman.2025.02.471
- PubMed: 40032035
- Original source →
- Free full text: Journal of Pain and Symptom Management →
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
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's author list ends in “et al.”, so not every author is named. Check the citation against the original before you use it.
APA 7th
van der Steen, J. T., Van den Block, L., Nakanishi, M., Dening, K. H., Parker, D., Larkin, P. J., et al. (2025). Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study. Journal of Pain and Symptom Management. https://doi.org/10.1016/j.jpainsymman.2025.02.471
Vancouver
van der Steen JT, Van den Block L, Nakanishi M, Dening KH, Parker D, Larkin PJ, et al. Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study. Journal of Pain and Symptom Management. 2025. doi:10.1016/j.jpainsymman.2025.02.471. PMID: 40032035.
BibTeX
@article{vandersteen2025-40032035,
author = {van der Steen, Jenny Theodora and Van den Block, Lieve and Nakanishi, Miharu and Dening, Karen Harrison and Parker, Deborah and Larkin, Philip Joseph and Di Giulio, Paola and der Schmitten, Jürgen in and others},
title = {{Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study}},
journal = {Journal of Pain and Symptom Management},
year = {2025},
doi = {10.1016/j.jpainsymman.2025.02.471},
pmid = {40032035},
url = {https://doi.org/10.1016/j.jpainsymman.2025.02.471}
}
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