The DOI matches its Crossref record; 19 of the 20 references it cites were found in a registry or an index.
Assessing the Competence of Persons With Alzheimer’s Disease in Providing Informed Consent for Participation in Research
Abstract
OBJECTIVE: The capacity of persons with Alzheimer's disease or other neuropsychiatric disorders for giving consent to participate in research has come under increasing scrutiny. While instruments for measuring abilities related to capacity have been developed, how they should be used to categorize subjects as capable or incapable is not clear. A criterion validation study was carried out to help address this question. METHOD: The authors measured the ability of 37 subjects with mild-to-moderate Alzheimer's disease and 15 elderly comparison subjects to provide consent for participation in a hypothetical clinical trial. Using the judgment of three experts as the criterion standard, the authors performed a receiver operator characteristic analysis for the capacity ability measures from the MacArthur Competence Assessment Tool-Clinical Research VERSION: The results were compared with categorizations of capacity status that were based on normative values. RESULTS: While most comparison subjects scored perfectly on all measures of the competence assessment tool, the majority of the group with Alzheimer's disease showed significant decision-making impairment. Thresholds based on normative values resulted in 84% (N=31) of the Alzheimer's disease subjects being rated as incapable on at least one ability; thresholds based on expert judgment resulted in 62% (N=23) failing to meet cutoff scores on at least one ability. CONCLUSIONS: Even relatively mild Alzheimer's disease significantly impairs consent-giving capacity. But differentiating capable from incapable subjects remains an issue despite the aid of standardized tools. More research is needed to understand the relationship between subject factors (performance on ability measures) and categorical judgments about their capacity.
Overview
Integrity signals
Registry
Cites
Statistics
Verification
Claims the paper makes
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
In the citing paper
“In adults, systematic studies using MacCAT-CR were conducted in populations of mentally compromised patients [29, 30].”
From Why is it hard to make progress in assessing children's decision-making competence? (2015) · cites this paper as [29]
In the citing paper
“Previous research demonstrated that the MacCAT scales provide the best results [28–30].”
From Why is it hard to make progress in assessing children's decision-making competence? (2015) · cites this paper as [29]
Citations
Cites
McKhann, G., Drachman, D., Folstein, M., Katzman, R., Price, D., & Stadlan, E. M. (1984) · Neurology · doi:10.1212/wnl.34.7.939 · Cited by 27,915
Statistical Methods for Rates and Proportions
Fleiss, J. L., Levin, B., & Paik, M. C. (2003) · Wiley Series in Probability and Statistics · doi:10.1002/0471445428 · Cited by 18,646
Statistical Methods for Rates and Proportions, 2nd ed
GROVE, W. A. (1981) · American Journal of Psychiatry · doi:10.1176/ajp.138.12.1644-a · Cited by 3,756
The MacCAT-T: a clinical tool to assess patients' capacities to make treatment decisions
(1997) · Psychiatric Services · doi:10.1176/ps.48.11.1415 · Cited by 704
Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals
Grisso, T., & Appelbaum, P. S. (1998) · DigitalGeorgetown (Georgetown University Library) · Cited by 572
Decisional Capacity for Informed Consent in Schizophrenia Research
Carpenter, W. T. (2000) · Archives of General Psychiatry · doi:10.1001/archpsyc.57.6.533 · Cited by 506
The MacArthur Treatment Competence Study. I: Mental illness and competence to consent to treatment.
Appelbaum, P. S., & Grisso, T. (1995) · Law and Human Behavior · doi:10.1007/bf01499321 · Cited by 424
Marson, D. C. (1995) · Archives of Neurology · doi:10.1001/archneur.1995.00540340029010 · Cited by 347
Competence of Depressed Patients for Consent to Research
Appelbaum, P. S., Grisso, T., Frank, E., O’Donnell, S., & Kupfer, D. J. (1999) · American Journal of Psychiatry · doi:10.1176/ajp.156.9.1380 · Cited by 279
Assessment of patient capacity to consent to treatment
Etchells, E. E., Darzins, P. J., Silberfeld, M., SINGER, P. A., McKenny, J., Naglie, G., Katz, M. R., Guyatt, G., Molloy, D. W., & Strang, D. G. (1999) · Journal of General Internal Medicine · doi:10.1046/j.1525-1497.1999.00277.x · Cited by 272
Flagged first, then by citations
1 of the 20 references couldn’t be matched to a known paper.
Research works printed but not linked: 2
- American Psychiatric Association: Guidelines for assessing the decision-making capacities of potential research subjects with cognitive impairment. Am J Psychiatry 1998; 155:1649–1650
- Charney DS, Innis B, Nestler EJ: New requirements for manuscripts submitted to Biological Psychiatry: informed consent and protection of subjects. Biol Psychiatry 1999; 46:1007–1008
Cited by
Sorted by citations
Items 201–254 of 254
Conceptualization or Assessment: One at a Time or Both?
Doorn, N. (2011) · Philosophy, psychiatry & psychology · doi:10.1353/ppp.2011.0017 · Cited by 2
“Empirical studies show that physicians and professionals concerned with the daily care of patients are generally less inclined to assess a patient’s competence negatively than family members (Cf. Biesaart and Hubben 1999; Kim et al. 2001; Vellinga et al. 2004).”
BackgroundSudo, F. K., Salles, A. C. S., & de Santiago, C. R. (2016) · Brazilian Journal of Psychiatry · doi:10.1590/1516-4446-2014-1603 · Cited by 2
Competence for Informed Consent for Treatment and Research
Kim, S. Y. H. (2013) · Oxford University Press eBooks · doi:10.1093/acprof:oso/9780195389784.003.0007 · Cited by 2
Self-citationDePoy, E., & Gitlin, L. N. (2015) · Elsevier eBooks · doi:10.1016/b978-0-323-26171-5.00003-3 · Cited by 2
Byun, E. (2013) · ScholarlyCommons (University of Pennsylvania) · Cited by 2
Supporting persons with dementia and their spouses everyday occupations in the home environment
Vikström, S. (2008) · Figshare · Cited by 2
Taylor, D. (2014) · cIRcle (University of British Columbia) · doi:10.14288/1.0102587 · Cited by 2
Russell, A. M., Shepherd, V., Woolfall, K., Young, B., Gillies, K., Volkmer, A., Jayes, M., Huxtable, R., Perkins, A., Noor, N. M., et al. (2022) · Research Square · doi:10.21203/rs.3.rs-2123156/v1 · Cited by 2
Salvadores, N. (2026) · Brain Communications · doi:10.1093/braincomms/fcag011 · Cited by 1
Retrait de consentement et chirurgie éveillée : illustration et enjeux éthiques
Wager, M., Boisguéheneuc, F. D., Bouyer, C., Pluchon, C., Stal, V., & Gil, R. (2014) · Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques · doi:10.1017/cjn.2014.26 · Cited by 1
“Mais, de même qu’en cas d’expression du consentement se pose la question de la « compétence décisionnelle » du malade, doit-on de la même manière rechercher la compétence décisionnelle du sujet au moment où il retire son consentement? L’évaluation de la compétence décisionnelle a été étudiée chez des malades présentan…”
Ethical and Legal Issues of Geriatrics
Hoehner, P. J. (2017) · Springer eBooks · doi:10.1007/978-3-319-66878-9_3 · Cited by 1
Ethical Perspective of Medical Research
Basavarajaiah, D. M., & Murthy, B. N. (2020) · Springer eBooks · doi:10.1007/978-981-15-8210-3_12 · Cited by 1
Duron, E., Boulay, M., Vidal, J., El-Bchiri, J., Fraisse, M., Rigaud, A., & Hugonot-Diener, L. (2013) · The journal of nutrition health & aging · doi:10.1007/s12603-012-0432-2 · Cited by 1
Bioethical Issues in Medicinal Chemistry and Drug Treatment
Wolpe, P., Sahl, M., & Howard, J. R. (2007) · Comprehensive Medicinal Chemistry II · doi:10.1016/b0-08-045044-x/00025-0 · Cited by 2
Kim, S. Y. H. (2012) · Cambridge University Press eBooks · doi:10.1017/cbo9781139032445.018 · Cited by 1
Self-citationPolicy, Ethical, and Legal Issues
Gupta, A., & Balasubramaniam, M. (2018) · Springer eBooks · doi:10.1007/978-3-319-73078-3_31 · Cited by 1
Can Psychopharmacology Do More for Our Patients With Anosognosia?
Rothschild, A. J. (2023) · Journal of Clinical Psychopharmacology · doi:10.1097/jcp.0000000000001687 · Cited by 1
Informed Decision‐Making and the Evaluation of Decision‐Making Capacity
Seyfried, L. S., Akinyemi, E., & Kim, S. Y. H. (2013) · doi:10.1002/9781118674963.ch4 · Cited by 1
Self-citationTobias, K. G., & Rosenfeld, B. D. (2015) · The Encyclopedia of Clinical Psychology · doi:10.1002/9781118625392.wbecp383 · Cited by 1
DEA D'ETHIQUE MEDICALE ET BIOLOGIQUE
Pr, P., Daumard, P., Pr, D., & Hervé, C. (2000) · Cited by 1
Patient Choice and Endy-of-Life Decisions
Colenda, C. C. (2003) · American Journal of Geriatric Psychiatry · doi:10.1097/00019442-200301000-00020 · Cited by 1
Learning and Remembering in Older Adults and Older Adults with Neurocognitive Disorders
Steingrímsdóttir, H. S. (2015) · NORA - Norwegian Open Research Archives · Cited by 1
(2001) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.376 · Cited by 1
MacArthur Competence Assessment Tools
Schaefer, L. A. (2017) · Springer eBooks · doi:10.1007/978-3-319-56782-2_1613-2 · Cited by 1
Assessing Mental Competency in the Elderly
Yury, C. A., Gentry, R. A., Roux, H. L., Fisher, J. E., & Buchanan, J. A. (2004) · Elsevier eBooks · doi:10.1016/b978-012524196-0/50011-5 · Cited by 1
Maladie d'Alzheimer et maladies apparentées – approches de la fin de vie
Hournau-Blanc, J. (2014) · Jusqu’à la mort accompagner la vie · doi:10.3917/jalmalv.117.0091 · Cited by 2
La problématique particulière des essais dans les domaines cognitifs et comportementaux
Vétel, J.-M., & Hugonot-Diener, L. (2004) · Therapies · doi:10.2515/therapie:2004046
Ethical Considerations in Periodontal Research
Dumitrescu, A. L. (2012) · Springer eBooks · doi:10.1007/978-3-642-28923-1_2
Competence and Autonomy: The Cases of Driving, Voting, and Financial Independence
Karlawish, J. H. (2013) · Oxford University Press eBooks · doi:10.1093/acprof:oso/9780195389784.003.0006
Ethics of Clinical Research Involving Adults with Impaired Decision-Making Capacity
Biswas, T. (2016) · Bangladesh Journal of Bioethics · doi:10.3329/bioethics.v7i1.29302
Lee, M. (2009) · Korean Journal of Social Welfare · doi:10.20970/kasw.2009.61.3.003
Informirani pristanak kod osoba s afazijom
Šarić, L., & Lice, K. (2018) · Logopedija · doi:10.31299/log.8.1.5
Research Ethics in Geriatric Psychiatry
Dunn, L. B., & Predescu, I. (2019) · Springer eBooks · doi:10.1007/978-3-030-15172-0_7
Legal Aspects of Inpatient Geriatric Psychiatry
Columbo, K. M., Kelly, M., & McGowan, L. (2019) · Springer eBooks · doi:10.1007/978-3-030-10401-6_5
Assessment of patient competence for making decisions
Palacios, G. J., Pinto, P., Marquez, O., & Herreros, B. (2020) · Revista Clínica Española (English Edition) · doi:10.1016/j.rceng.2019.04.013
Bangma, D. F. (2021) · University of Groningen research database (University of Groningen / Centre for Information Technology) · doi:10.33612/diss.190019115
Hutchison, C. B. (2008) · Stirling Online Research Repository (University of Stirling)
Ente, C., & Ukpe, M. (2022) · Springer eBooks · doi:10.1007/978-3-030-92482-9_4
(2011) · Wiley eBooks · doi:10.1002/9781119961307.refs
Evidence-based ethics for neurology and psychiatry research
Kim, S. Y. H. (2004) · Neurotherapeutics · doi:10.1007/bf03206623
Self-citationMacArthur Competence Assessment Tools
Schaefer, L. A. (2018) · Springer eBooks · doi:10.1007/978-3-319-57111-9_1613
An Investigation of the Relationship between MBTI Personality Types and Decision-Making Competence
MesároÅ¡ová, M., & ar, J. B. ⁄. (2017) · New Trends and Issues Proceedings on Humanities and Social Sciences · doi:10.18844/prosoc.v2i6.1430
Illness Experiences of People with Young-onset Dementia
Ahn, S., & Yi, Y. (2023) · Journal of Korean Academy of Psychiatric and Mental Health Nursing · doi:10.12934/jkpmhn.2023.32.1.67
Kelly, M., McGowan, L., & Fenn, H. H. (2024) · Springer eBooks · doi:10.1007/978-3-031-53976-3_17
(2021) · American Psychiatric Association Publishing eBooks · doi:10.1176/appi.books.9781615379651.bm01
Potthoff, S., & Erdmann, A. (2025) · Advances in research ethics and integrity · doi:10.1108/s2398-601820250000012013
Law, S., Stergiopoulos, V., Zaheer, J., & Nakhost, A. (2025) · Behavioral Sciences · doi:10.3390/bs15050704
“…2007; Gutheil & Appelbaum, 2019), they often encounter unique situations and dilemmas related to the substituted judgment standard, the best-interests principle, and working with SDMs who have varied levels of involvement, style, and approach in care, as well as knowledge levels (Kim et al., 2020).”
Chapter 22. Ethical Issues and Patterns of Practice
Hughes, J. C. (2009) · American Psychiatric Association Publishing eBooks · doi:10.1176/appi.books.9781585628940.lg22
Chapter 14. Ethical and Legal Issues
Marson, D. C., & Solomon, A. C. (2011) · American Psychiatric Association Publishing eBooks · doi:10.1176/appi.books.9781585629527.lg14
The Ethics of Digital Psychiatry
Maurya, S. K. (2026) · doi:10.1002/9781394429660.ch2
Ethical Issues in Geriatric Mental Health Care
Palsetia, D. (2026) · Springer eBooks · doi:10.1007/978-981-95-2121-0_42
Blank, L., Khorsandi, J., Asare, M., Cranor, J., Blank, B., & Wu, M. (2026) · Music Therapy Perspectives · doi:10.1093/mtp/miag009
Metadata
- Authors
- Kim, S. Y. H., Caine, E. D., Currier, G. W., Leibovici, A., & Ryan, J. M.
- Affiliations
- University of Rochester Medicine (US)
- Venue
- American Journal of Psychiatry
- Published
- 2001-05-01
- Volume
- 158
- Issue
- 5
- Pages
- 712-717
- ISSN
- 0002-953X (ISSN-L)
- 1535-7228
- OpenAlex
- W1982530475
- Cited by
- 255
- References
- 20
- Citations by year
- 2026: 4 · 2025: 3 · 2024: 1 · 2023: 4 · 2022: 4 · 2021: 6 · 2020: 6 · 2019: 7 · 2018: 8 · 2017: 11 · 2016: 12 · 2015: 10 · 2014: 8 · 2013: 24 · 2012: 8
- FWCI
- 17.76
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- American Journal of Psychiatry (publishedVersion)
- PubMed (publishedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Funders
- National Institute of Mental Health (MH18911, T32MH018911)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Healthcare Decision-Making and Restraints
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- Alzheimer's disease, informed consent, research participation, decision-making capacity, neuropsychiatric disorders, expert opinion, decision-making impairment
- MeSH terms
- Aged, Alzheimer Disease, Clinical Trials as Topic, Female, Forensic Psychiatry, Humans, Informed Consent, Male, Psychiatric Status Rating Scales, Psychometrics, Research Design, ROC Curve, Sensitivity and Specificity, Severity of Illness Index, Geriatric Assessment, Mental Competency, Patient Selection
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
