Home › Research › End-of-life care
Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia
Gabbard J, Johnson D, Russell G, Spencer S, Williamson JD, McLouth LE, Ferris KG, Sink K et al.. The American journal of hospice & palliative care, 2019-12-19
Topic: Risk, prevention and care in population studies
Background Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed. Objective To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care. Design A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time. Results A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD's physicians (25% in 2012 vs 45% in 2018; P = .027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD's prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 ( P = .015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 ( P = .39) felt that they were knowledgeable about PC. Conclusions Prognostic discussions between caregivers of PwD and the PwD's physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Gabbard, J., Johnson, D., Russell, G., Spencer, S., Williamson, J. D., McLouth, L. E., et al. (2020). Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia. The American journal of hospice & palliative care. https://doi.org/10.1177/1049909119895497
Vancouver
Gabbard J, Johnson D, Russell G, Spencer S, Williamson JD, McLouth LE, et al. Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia. The American journal of hospice & palliative care. 2020. doi:10.1177/1049909119895497. PMID: 31854201.
BibTeX
@article{gabbard2020-31854201,
author = {Gabbard, J. and Johnson, D. and Russell, G. and Spencer, S. and Williamson, J. D. and McLouth, L. E. and Ferris, K. G. and Sink, K. and others},
title = {{Prognostic Awareness, Disease and Palliative Understanding Among Caregivers of Patients With Dementia}},
journal = {The American journal of hospice \& palliative care},
year = {2020},
doi = {10.1177/1049909119895497},
pmid = {31854201},
url = {https://doi.org/10.1177/1049909119895497}
}
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.
Key findings
- Background Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance.
- Results A total of 154 of caregivers completed the survey (response rate 55%).
- Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD's physicians (25% in 2012 vs 45% in 2018; P = .027).
Study details
- Study designcross-sectional
- Participants80
- Evidence strengthModerate
How this study scored 55/100
Published in a peer-reviewed journal, and it is a snapshot of people at one point in time. Scored zero for effect reported and randomised / blinded because the record does not state it. We have no data on journal's citation record, 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 32 of the 58 points we could judge it on, which is 55 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (The American journal of hospice & palliative care) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 4 / 12 | A snapshot of people at one point in time |
| 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 | 2 / 5 | 2020 — within 10 year(s) of the newest study here |
| Sample size | 1 / 4 | 80 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 | — / 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 | 2 / 2 | Indexed in PubMed (PMID 31854201) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 32 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 32 of the 58 points we could judge it on is 55 out of 100. |
| Total | 55 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
Free copy unknown: no free-copy check has an answer for this record yet. That does not mean it is paywalled.
Related studies in End-of-life care
Also tagged “care”
996 studies in the library carry the topic tag “care”; these are this study's neighbours in a fixed, alphabetical-by-hash tour of them, not the closest in content. All 996 tagged studies.