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Preservation of the capacity to appoint a proxy decision maker: implications for dementia research
Kim SY, Karlawish JH, Kim HM, Wall IF, Bozoki AC, Appelbaum PS.. Archives of general psychiatry, 2011-02-01
Topic: Risk, prevention and care in population studies
Context Research involving persons with impaired decision-making capacity (such as persons with Alzheimer disease [AD]) remains ethically challenging, especially when the research involves significant risk. If individuals incapable of consenting to research studies were able to appoint a research proxy, it would allow for an appointed surrogate (rather than a de facto surrogate) to represent the subject. Objective To assess the extent to which persons with AD retain their capacity to appoint a research proxy. Design Interview study. Setting Academic research. Participants One hundred eighty-eight persons with AD were interviewed for their capacity to appoint a proxy for research and to provide consent to 2 hypothetical research scenarios, a lower-risk randomized clinical trial testing a new drug (drug RCT) and a higher-risk randomized clinical trial testing neurosurgical cell implants using a sham control condition (neurosurgical RCT). Categorical capacity status for each subject was determined by independent videotaped reviews of capacity interviews by 5 experienced psychiatrists. Main outcome measures Categorical capacity determinations for the capacity to appoint a research proxy, capacity to consent to a drug RCT, and capacity to consent to a neurosurgical RCT. Results Data showed that 37.7% (40 of 106) of those deemed incapable of consenting to the drug RCT and 54.8% (86 of 157) of those deemed incapable of consenting to the neurosurgical RCT were found capable of appointing a research proxy. Only 7 of 186 (3.8%) were deemed capable of consenting to the neurosurgical RCT by all 5 psychiatrists. Conclusions A substantial proportion of persons with AD who were thought incapable of consenting to lower-risk or higher-risk studies have preserved capacity for appointing a research proxy. Because few persons are found to be unequivocally capable of providing independent consent to higher-risk AD research, providing for an appointed surrogate even after the onset of AD, which might best be done in the early stages of the illness, may help address key ethical challenges to AD research.
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APA 7th
Kim, S. Y., Karlawish, J. H., Kim, H. M., Wall, I. F., Bozoki, A. C., & Appelbaum, P. S. (2011). Preservation of the capacity to appoint a proxy decision maker: implications for dementia research. Archives of general psychiatry. https://doi.org/10.1001/archgenpsychiatry.2010.191
Vancouver
Kim SY, Karlawish JH, Kim HM, Wall IF, Bozoki AC, Appelbaum PS. Preservation of the capacity to appoint a proxy decision maker: implications for dementia research. Archives of general psychiatry. 2011. doi:10.1001/archgenpsychiatry.2010.191. PMID: 21300949.
BibTeX
@article{kim2011-21300949,
author = {Kim, S. Y. and Karlawish, J. H. and Kim, H. M. and Wall, I. F. and Bozoki, A. C. and Appelbaum, P. S.},
title = {{Preservation of the capacity to appoint a proxy decision maker: implications for dementia research}},
journal = {Archives of general psychiatry},
year = {2011},
doi = {10.1001/archgenpsychiatry.2010.191},
pmid = {21300949},
url = {https://doi.org/10.1001/archgenpsychiatry.2010.191}
}
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.
Key findings
- Context Research involving persons with impaired decision-making capacity (such as persons with Alzheimer disease [AD]) remains ethically challenging, especially when the research involves significant risk.
- Results Data showed that 37.7% (40 of 106) of those deemed incapable of consenting to the drug RCT and 54.8% (86 of 157) of those deemed incapable of consenting to the neurosurgical RCT were found capable of appointing a research proxy.
Why it matters
This interview study found that many people with Alzheimer's disease who could not consent to research were still able to appoint a research proxy. It concerns research ethics and consent, not treatment, cure, or prevention of the disease.
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Study details
- Effect size37.7%; 54.8%; 3.8%
- Evidence strengthHigh
How this study scored 49/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, studied in people and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Archives of general psychiatry) |
| Journal's citation record | 4 / 4 | Archives of General Psychiatry: journal h-index 543 (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 | 5 / 5 | Rated “high” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 1 / 5 | 2011 — within 20 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) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 4 / 7 | Cited 64 times (OpenAlex, 2026-10-10) |
| Citations per year | 2 / 5 | 3.8 citations a year over 17 year(s) since 2011 |
| Impact for its field and year | 3 / 6 | Cited 6.2× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 2 / 6 | Cited by 3 other studies in this library |
| Still being cited | 1 / 4 | Cited 6 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 3 / 4 | Last-listed author Paul S. Appelbaum: h-index 82 (OpenAlex, whole career) |
| Institution's track record | 2 / 3 | University of Michigan: institution h-index 2,240 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 3 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 21300949) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Total | 49 / 100 | — |
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Read the original
- DOI: 10.1001/archgenpsychiatry.2010.191
- PubMed: 21300949
- Original source →
- Free full text: PubMed Central →
Full text: free to read — PubMed Central lists this copy as free to read: the link above (checked 10 Oct 2026).
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