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Caregivers’ Perspectives on Discussions of Medical Treatment Preferences for People Living With Dementia Are Associated With Their Dementia Health Literacy and the Caregiving Relationship
Yuchen Zhang, Susan M. Sereika, Jennifer Burgher Seaman, Corinne A. Pettigrew, Marilyn Albert, Jennifer Hagerty Lingler. The Gerontologist, 2025-01-29
Topic: Risk, prevention and care in population studies
On average, surveyed caregivers (n = 431) were 78.3 years, had 16 years of education, and were mainly White (88.5%). Most lived with (76.8%) and were the designated healthcare proxy (95.1%), with high dementia knowledge scores (mean = 8.4/10). As caregivers' dementia knowledge scores increased, they were 1.27 times more likely (p = .02) to endorse comfort care. Caregivers with greater knowledge about severe dementia were less likely to need further treatment preference-related discussions (knowing a lot: odds ratio [OR] = 0.17, p < .001; knowing some things: OR = 0.37, p = .006). Caregivers live apart from patients were 2.71 times more likely to know about such discussions (p < .001). Caregivers of people in earlier stages endorsed greater needs for further conversations with clinicians (no impairment and mild cognitive impairment [MCI]: OR = 7.38, p = .002; mild impairment: OR = 5.32, p = .005) and their care recipients (no impairment and MCI: OR = 5.24, p = .02). DISCUSSION AND These findings highlight the role of dementia-specific education in ACP discussions among people living with dementia, caregivers, and healthcare clinicians. These findings are important because evidence suggests that ACP may promote quality of life, reduce iatrogenic harm, minimize healthcare overutilization, and alleviate care-related burdens.
Key findings
- On average, surveyed caregivers (n = 431) were 78.3 years, had 16 years of education, and were mainly White (88.5%).
- Most lived with (76.8%) and were the designated healthcare proxy (95.1%), with high dementia knowledge scores (mean = 8.4/10).
- As caregivers' dementia knowledge scores increased, they were 1.27 times more likely (p = .02) to endorse comfort care.
- Caregivers with greater knowledge about severe dementia were less likely to need further treatment preference-related discussions (knowing a lot: odds ratio [OR] = 0.17, p < .001; knowing some things: OR = 0.37, p = .006).
- Caregivers live apart from patients were 2.71 times more likely to know about such discussions (p < .001).
Why it matters
This cross-sectional survey of 431 caregivers found that as dementia knowledge scores increased, caregivers were more likely to endorse comfort care and less likely to need further treatment preference discussions. It highlights the role of dementia-specific education in advance care planning discussions.
Study details
- Study designcross-sectional
- Participants431
- Effect size88.5%; 76.8%; 95.1%
- Evidence strengthLow
How this study scored 49/100
Published in a peer-reviewed journal, and it is a snapshot of people at one point in time. Scored zero for randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (The Gerontologist) |
| Journal's citation record | 2 / 4 | The Gerontologist: journal h-index 238 (OpenAlex, 2026-10-29) |
| Study design | 4 / 12 | A snapshot of people at one point in time |
| 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 | 2 / 4 | 431 participants |
| Effect reported | 2 / 3 | Effect reported as a number, without an interval or test |
| 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 3 times (OpenAlex, 2026-10-10) |
| Citations per year | 1 / 5 | 1.0 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 2 / 6 | Cited 2.5× 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 | 1 / 4 | Cited 3 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 2 / 4 | Last-listed author Jennifer Hagerty Lingler: h-index 33 (OpenAlex, whole career) |
| Institution's track record | 2 / 3 | Johns Hopkins University: institution h-index 2,306 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 2 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 39878947) |
| 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
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
Zhang, Y., Sereika, S. M., Seaman, J. B., Pettigrew, C. A., Albert, M., & Lingler, J. H. (2025). Caregivers’ Perspectives on Discussions of Medical Treatment Preferences for People Living With Dementia Are Associated With Their Dementia Health Literacy and the Caregiving Relationship. The Gerontologist. https://doi.org/10.1093/geront/gnaf033
Vancouver
Zhang Y, Sereika SM, Seaman JB, Pettigrew CA, Albert M, Lingler JH. Caregivers’ Perspectives on Discussions of Medical Treatment Preferences for People Living With Dementia Are Associated With Their Dementia Health Literacy and the Caregiving Relationship. The Gerontologist. 2025. doi:10.1093/geront/gnaf033. PMID: 39878947.
BibTeX
@article{zhang2025-39878947,
author = {Zhang, Yuchen and Sereika, Susan M. and Seaman, Jennifer Burgher and Pettigrew, Corinne A. and Albert, Marilyn and Lingler, Jennifer Hagerty},
title = {{Caregivers’ Perspectives on Discussions of Medical Treatment Preferences for People Living With Dementia Are Associated With Their Dementia Health Literacy and the Caregiving Relationship}},
journal = {The Gerontologist},
year = {2025},
doi = {10.1093/geront/gnaf033},
pmid = {39878947},
url = {https://doi.org/10.1093/geront/gnaf033}
}
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