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Development and Validation of the End‐of‐Life Assessment Tool for Advanced Dementia: A Multi Method Study
Carolyn Bourke, Lynn Chenoweth, Ekavi N. Georgousopoulou, Anna Williams. Journal of Advanced Nursing, 2025-08-06
Topic: Risk, prevention and care in population studies
The item-bank included 180 symptoms, most of which focus group nurses (n = 17) identified as occurring in advanced dementia. Delphi surveys with dementia experts (n = 31) achieved 70% consensus for 25 of 26 EoLC-ATD items. Pilot testing of the EoLC-ATD by two nurses in eight persons with dementia showed good agreement for six constructs (Cohen's Kappa 0.856-0.927) and 26 items (Cronbach's alpha 77.0). An 'other sympto' item was included following RN recommendation. The 27-item EoLC-ATD field tested by 17 nurses in persons with dementia (n = 113) accurately identified advanced dementia symptoms (Cronbach's alpha 77.0, p < 0.001). Mortality at 180 days after baseline EoLC-ATD was significant (p < 0.001, area under the ROC curve p = 0.769). The EoLC-ATD accurately and reliably identified symptoms of advanced dementia. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The EoLC-ATD provides registered nurses with a single measure of advanced dementia symptoms that will help in identifying symptom-responsive palliative care requirements. IMPACT: The EoLC-ATD will address the current lack of a validated dementia symptom measure for use by aged care home registered nurses to identify unique palliative and end-of-life care needs according to presenting symptoms in persons living with advanced dementia. REPORTING
Key findings
- The item-bank included 180 symptoms, most of which focus group nurses (n = 17) identified as occurring in advanced dementia.
- Delphi surveys with dementia experts (n = 31) achieved 70% consensus for 25 of 26 EoLC-ATD items.
- Pilot testing of the EoLC-ATD by two nurses in eight persons with dementia showed good agreement for six constructs (Cohen's Kappa 0.856-0.927) and 26 items (Cronbach's alpha 77.0).
- An 'other sympto' item was included following RN recommendation.
- The 27-item EoLC-ATD field tested by 17 nurses in persons with dementia (n = 113) accurately identified advanced dementia symptoms (Cronbach's alpha 77.0, p < 0.001).
Why it matters
This study developed and tested a 27-item tool that nurses can use to identify symptoms in people with advanced dementia. It is about measuring and managing symptoms at the end of life, not about treating, curing or preventing Alzheimer's disease itself.
Study details
- Participants17
- Evidence strengthModerate
How this study scored 42/100
Published in a peer-reviewed journal. Scored zero for study design, effect reported and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of Advanced Nursing) |
| Journal's citation record | 3 / 4 | Journal of Advanced Nursing: journal h-index 262 (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 | 3 / 5 | Rated “moderate” 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 | 1 / 4 | 17 participants |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 1 / 7 | Cited 1 times (OpenAlex, 2026-10-10) |
| Citations per year | 0 / 5 | 0.3 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 1 / 6 | Cited 0.8× 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 1 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 2 / 4 | Last-listed author Anna Williams: h-index 31 (OpenAlex, whole career) |
| Institution's track record | 1 / 3 | UNSW Sydney: institution h-index 1,101 (OpenAlex) |
| Multi-centre collaboration | 2 / 3 | OpenAlex lists 7 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 40767121) |
| Free to read | 2 / 2 | Free to read |
| Total | 42 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.1111/jan.70129
- PubMed: 40767121
- Original source →
- Free full text: Journal of Advanced Nursing →
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. Check the citation against the original before you use it.
APA 7th
Bourke, C., Chenoweth, L., Georgousopoulou, E. N., & Williams, A. (2025). Development and Validation of the End‐of‐Life Assessment Tool for Advanced Dementia: A Multi Method Study. Journal of Advanced Nursing. https://doi.org/10.1111/jan.70129
Vancouver
Bourke C, Chenoweth L, Georgousopoulou EN, Williams A. Development and Validation of the End‐of‐Life Assessment Tool for Advanced Dementia: A Multi Method Study. Journal of Advanced Nursing. 2025. doi:10.1111/jan.70129. PMID: 40767121.
BibTeX
@article{bourke2025-40767121,
author = {Bourke, Carolyn and Chenoweth, Lynn and Georgousopoulou, Ekavi N. and Williams, Anna},
title = {{Development and Validation of the End‐of‐Life Assessment Tool for Advanced Dementia: A Multi Method Study}},
journal = {Journal of Advanced Nursing},
year = {2025},
doi = {10.1111/jan.70129},
pmid = {40767121},
url = {https://doi.org/10.1111/jan.70129}
}
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