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Perceived Barriers for Advance Care Planning Among People with Dementia and Family Caregivers: A Systematic Review of Qualitative Studies
Song D, Xu T.. Preprints.org, 2026-10-07
Topic: Health services, long-term care and technology
Two analytical themes were identified: (1) challenges in preserving the person's voice throughout the dementia trajectory, reflecting a shift toward caregiver-mediated decision-making, assumptions about capacity, and delayed ACP initiation; and (2) challenges in maintaining continuity of expressed values and preferences over time, reflecting uncertainty about future care needs and the limitations of one-time ACP conversations. Three contextual barriers, including limited ACP preparedness, insufficient healthcare professional and system support, and sociocultural influences, further shaped engagement. Methodological quality across included studies was high. ACP in dementia is shaped by challenges extending beyond commonly reported general-population barriers. Effective support for this population requires moving beyond one-time, capacity-focused documentation toward ongoing, relationally embedded approaches to communication and values clarification throughout the disease trajectory.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Song, D., & Xu, T. (2026). Perceived Barriers for Advance Care Planning Among People with Dementia and Family Caregivers: A Systematic Review of Qualitative Studies. Preprints.org. https://doi.org/10.20944/preprints202610.0356.v1
Vancouver
Song D, Xu T. Perceived Barriers for Advance Care Planning Among People with Dementia and Family Caregivers: A Systematic Review of Qualitative Studies. Preprints.org. 2026. doi:10.20944/preprints202610.0356.v1.
BibTeX
@article{song2026-0b983b67,
author = {Song, D. and Xu, T.},
title = {{Perceived Barriers for Advance Care Planning Among People with Dementia and Family Caregivers: A Systematic Review of Qualitative Studies}},
journal = {Preprints.org},
year = {2026},
doi = {10.20944/preprints202610.0356.v1},
url = {https://doi.org/10.20944/preprints202610.0356.v1}
}
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
Key findings
- Two analytical themes were identified: (1) challenges in preserving the person's voice throughout the dementia trajectory, reflecting a shift toward caregiver-mediated decision-making, assumptions about capacity, and delayed ACP initiation; and (2) challenges in maintaining continuity of expressed values and preferences over time, reflecting uncertainty about future care needs and the limitations of one-time ACP conversations.
- Three contextual barriers, including limited ACP preparedness, insufficient healthcare professional and system support, and sociocultural influences, further shaped engagement.
- Methodological quality across included studies was high.
- ACP in dementia is shaped by challenges extending beyond commonly reported general-population barriers.
- Effective support for this population requires moving beyond one-time, capacity-focused documentation toward ongoing, relationally embedded approaches to communication and values clarification throughout the disease trajectory.
Study details
- Evidence strengthLow
How this study scored 16/100
Preprint — not yet peer-reviewed. It scored 21 on the same rubric, but non-peer-reviewed sources are capped at 16, so it shows as 16. 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 times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multi-centre collaboration, so those were left out: it earned 13 of the 62 points we could judge it on, which is 21 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 2 / 10 | Tier 4 — not a peer-reviewed journal (Preprints.org) |
| Journal's citation record | 0 / 4 | Not a journal article, so the journal's record does not count |
| 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 | 4 / 10 | Preprint — not yet peer-reviewed. Hosted on a preprint server. |
| How recent | 5 / 5 | 2026 — within 1 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 | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| 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 |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 1 / 2 | Not in PubMed, but has a DOI |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 13 / 62 | Scored on 12 of 20 parts. We have no data for the rest, so they are left out: 13 of the 62 points we could judge it on is 21 out of 100. |
| Total | 21 / 100 | Capped to 16 because this is not a peer-reviewed article. |
What each of these 20 components measures, and what this score is not →
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