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Dementia and End-of-Life Shared Decision-Making Among Older US Adults
Xie Z, Hong Y, Armstrong MJ, Wang X, Jacobs M.. Journal of the American Medical Directors Association, 2026-03-30
Topic: Health services, long-term care and technology
Introduction End-of-life decision-making poses unique challenges for individuals with dementia and their family caregivers as cognitive decline shifts decision-making responsibility to surrogates. Methods Using 2010–2022 Health and Retirement Study (HRS) exit interview data, we compared advance directive completion, decision-making needs near death, involvement of others in decision-making, and concordance between expressed preferences and care received among decedents with and without dementia. Analyses incorporated HRS exit interview sampling weights, primary sampling units, and strata to account for the complex multistage probability design of HRS and produce nationally representative estimates of U.S. older adult decedents (≥50 years). Weighted descriptive statistics and design-adjusted Wald tests were used to compare groups. Results Among 5,389 decedents, 1,010 (weighted 17.7%) had dementia prior to death. Decedents with dementia were more likely to have completed advance directives than those without dementia (81.3% vs. 69.1%, p<.001). However, they also had significantly higher decision-making needs in the final days of life (54.3% vs. 47.2%, p<.001). Children or grandchildren were more frequently involved in care decisions for decedents with dementia (63.9% vs. 45.6%, p<.001). Despite differences in decision-making processes, most decedents in both groups expressed preferences for comfort-focused care, and preference–care concordance exceeded 90% in both groups. Conclusions Findingss: uggested that dementia reshaped the structure and intensity of the shared decision-making process by increasing surrogate engagement and decisional demands, underscoring the importance of early advance care planning and structured support for family caregivers to sustain goal-concordant care.
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APA 7th
Xie, Z., Hong, Y., Armstrong, M. J., Wang, X., & Jacobs, M. (2026). Dementia and End-of-Life Shared Decision-Making Among Older US Adults. Journal of the American Medical Directors Association. https://doi.org/10.64898/2026.03.27.26349555
Vancouver
Xie Z, Hong Y, Armstrong MJ, Wang X, Jacobs M. Dementia and End-of-Life Shared Decision-Making Among Older US Adults. Journal of the American Medical Directors Association. 2026. doi:10.64898/2026.03.27.26349555.
BibTeX
@article{xie2026-cc2b3a9e,
author = {Xie, Z. and Hong, Y. and Armstrong, M. J. and Wang, X. and Jacobs, M.},
title = {{Dementia and End-of-Life Shared Decision-Making Among Older US Adults}},
journal = {Journal of the American Medical Directors Association},
year = {2026},
doi = {10.64898/2026.03.27.26349555},
url = {https://doi.org/10.64898/2026.03.27.26349555}
}
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Key findings
- Results Among 5,389 decedents, 1,010 (weighted 17.7%) had dementia prior to death.
- However, they also had significantly higher decision-making needs in the final days of life (54.3% vs. 47.2%, p<.001).
Study details
- Effect size17.7%; 81.3%; 69.1%
- Evidence strengthLow
How this study scored 45/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, studied in people and randomized / 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 multicenter collaboration, so those were left out: it earned 26 of the 58 points we could judge it on, which is 45 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of the American Medical Directors Association) |
| 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 | 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 | 2 / 3 | Effect reported as a number, without an interval or test |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomized / blinded | 0 / 2 | No randomization 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 |
| Multicenter 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 | 26 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 26 of the 58 points we could judge it on is 45 out of 100. |
| Total | 45 / 100 | — |
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