Home › Research › End-of-life care
Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia-Specific Advance Care Planning
Fried TR, Cohen AB, Harris JE, Moreines L.. Journal of the American Geriatrics Society, 2020-11-20
Topic: Risk, prevention and care in population studies
Background/objectives Advance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia-specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia-specific ACP. Design Qualitative study with separate focus groups for patients and caregivers. Setting Memory disorder clinics. Participants Twenty eight persons aged 65+ with mild cognitive impairment or early dementia and 19 caregivers. Measurements Understanding of dementia trajectory and types of planning done; how medical decisions would be made in the future; thoughts about these decisions. Results No participants had engaged in any written form of dementia-specific planning. Barriers to dementia-specific ACP emerged, including lack of knowledge about the expected trajectory of dementia and potential medical decisions, the need to stay focused in the present because of fear of loss of self, disinterest in planning because the patient will not be aware of decisions, and the expectation that involved family members would take care of issues. Some patients had trouble engaging in the discussion. Patients had highly variable views on what the quality of their future life would be and on the leeway their surrogates should have in decision making. Conclusions Even among patients with early cognitive impairment seen in specialty clinics and their caregivers, most were unaware of the decisions they could face, and there were many barriers to planning for these decisions. These issues would likely be magnified in more representative populations, and highlight challenges to the use of dementia-specific advance directive documents.
Key findings
- Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia-specific ACP is necessary.
- Results No participants had engaged in any written form of dementia-specific planning.
Study details
- Evidence strengthLow
How this study scored 40/100
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, 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 23 of the 58 points we could judge it on, which is 40 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of the American Geriatrics Society) |
| 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 | 3 / 5 | 2021 — within 6 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 | 2 / 2 | Indexed in PubMed (PMID 33216955) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 23 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 23 of the 58 points we could judge it on is 40 out of 100. |
| Total | 40 / 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.
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
Fried, T. R., Cohen, A. B., Harris, J. E., & Moreines, L. (2021). Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia-Specific Advance Care Planning. Journal of the American Geriatrics Society. https://doi.org/10.1111/jgs.16953
Vancouver
Fried TR, Cohen AB, Harris JE, Moreines L. Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia-Specific Advance Care Planning. Journal of the American Geriatrics Society. 2021. doi:10.1111/jgs.16953. PMID: 33216955.
BibTeX
@article{fried2021-33216955,
author = {Fried, T. R. and Cohen, A. B. and Harris, J. E. and Moreines, L.},
title = {{Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia-Specific Advance Care Planning}},
journal = {Journal of the American Geriatrics Society},
year = {2021},
doi = {10.1111/jgs.16953},
pmid = {33216955},
url = {https://doi.org/10.1111/jgs.16953}
}
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.