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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.
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“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]
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“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]
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“People affected by dementia may not always express valid informed consent to participate in research (35,41).”
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“Both the complexity of the decision and its consequences may influence the assessment of decision-making capacity (Kim et al., 2001; Lowe, Kerridge, McPhee & Fairfull-Smith, 2000; Vellinga et al., 2001).”
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“The MacCAT-CR does not yield a limit score on the four abilities, but for practical purposes in some studies, cut-points have been determined to identify those who lack capacity [26–29].”
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Multimedia Aided Consent for Alzheimer’s Disease Research
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“Briefly, using methods previously developed by one of the co-authors (SYK) (Kim et al., 2001, 2007, 2011), this cut-score was developed and validated relative to determinations of three geriatric psychiatrists experienced in making capacity determinations.”
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“A standard methodology for competency assessment is the MacArthur Competency Assessment Tool for Clinical Research (MacCat-CR). A hypothetical research protocol in standard language is read to the subject, followed by a structured interview about the protocol, in which are assessed the subject’s ability of choosing, u…”
MethodAddressing the Ethical Challenges of Clinical Trials That Involve Patients with Dementia
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“Studies of subjects with mild to moderate aD show important variation in their ability to provide informed consent (4, 25, 26). another way to deal with this concern is to ask for caregiver opinion. nevertheless, caregiver‘s consent seems doubtful too. in the study by Karlawish et al (20)…”
Influence of mood state on capacity to consent to research in patients with bipolar disorder
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Self-citationSupporting autonomy of nursing home residents with dementia in the informed consent process
Beattie, E., OʼReilly, M., Fetherstonhaugh, D., McMaster, M., Moyle, W., & Fielding, E. (2018) · Dementia · doi:10.1177/1471301218761240 · Cited by 23
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Self-citationPrivacy challenges in smart homes for people with dementia and people with intellectual disabilities
Ó’Brolcháin, F., & Gordijn, B. (2019) · Ethics and Information Technology · doi:10.1007/s10676-019-09507-0 · Cited by 24
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Procedural Framework to Facilitate Hospital‐Based Informed Consent for Dementia Research
Holden, T. R., Keller, S. A., Kim, A., Gehring, M. B., Schmitz, E. J., Hermann, C., Gilmore‐Bykovskyi, A. L., & Kind, A. (2018) · Journal of the American Geriatrics Society · doi:10.1111/jgs.15525 · Cited by 21
“Although there are tools to assess for comprehensive research-specific capacity, they are impractical to administer in the busy, time-constrained setting of an acute care hospital for studies that pragmatically require rapid hospital-based enrollment and are of minimal risk.(31) The use of an activated HCPOA as a prox…”
MethodEthical considerations in psychopharmacological research involving decisionally impaired subjects
Rosenstein, D., & Miller, F. (2003) · Psychopharmacology · doi:10.1007/s00213-003-1503-1 · Cited by 24
“A research assistant, study nurse or investigator may well be blind as to whether a subject is on active medication or placebo but still be well aware that a Hamilton depression rating score ( Hamilton 1960 ) above a certain cut-off will result in that subject’s discontinuation from the study.”
BackgroundMethodPalmer, B. W., Ryan, K. A., Kim, H. M., Karlawish, J. H., Appelbaum, P. S., & Kim, S. Y. H. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2012.11.008 · Cited by 21
“It has excellent content validity, interrater reliability, and good testeretest reliability.(3,23,24) It assesses the range of abilities relevant to capacity for giving informed consent to research according to the four-abilities model of decisionmaking capacity: 1) understanding, 2) appreciation, 3) reasoning, and 4)…”
BackgroundMethodSelf-citationWolfson, C. M., Kirkland, S., Raina, P. S., Uniat, J., Roberts, K. C., Bergman, H., Furlini, L., Pelletier, A., Strople, G., Angus, C. L., et al. (2009) · Canadian Journal on Aging / La Revue canadienne du vieillissement · doi:10.1017/s0714980809990092 · Cited by 20
Ethical considerations for decision making for treatment and research participation
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Ethical issues when modelling brain disorders innon-human primates
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Vulnerability in Clinical Research with Patients in Pain: A Risk Analysis
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Informed Consent to Research in Long-Term Care Settings
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“It has been demonstrated that persons with scores of 18 or higher demonstrate adequate ability to provide consent (Kim et al., 2001), so this minimum score was used to determine eligibility when screening potential participants.”
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BackgroundMeasuring informed consent capacity in an Alzheimer's disease clinical trial
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“In another study in mildto-moderate AD, however, the authors concluded that standardized assessment tools may not be that helpful [49].”
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“All of the 9 articles that have assessed the capacity to give informed research consent have used the MacCAT-CR (clinical research), which is an adaptation of the MacCAT-T, specifically to determine research related decision-making capacity [27–35].”
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Capacity to Vote in Persons with Dementia and the Elderly
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Formal Assessment of Voluntariness With a Three-Part Consent Process
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Conflicts of interest in psychiatry: Strategies to cultivate literacy in daily practice
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Comparison of Provincial and Territorial Legislation Governing Substitute Consent for Research
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“However, as the disease progresses, those affected may become increasingly unable to understand the nature of the research or appreciate the consequences of their involvement (American Geriatrics Society Ethics Committee, 1998; American Psychiatric Association, 1998; Feinberg & Whitlatch, 2001; Kim, Caine, Currier, Le…”
BackgroundMorán‐Sánchez, I., Maldonado, A. L., & Pérez-Cárceles, M. D. (2015) · Psychiatric Quarterly · doi:10.1007/s11126-015-9365-3 · Cited by 13
Meta-Consent in Research on Decisional Capacity: A "Catch-22"?
Saks, E. R. (2005) · Schizophrenia Bulletin · doi:10.1093/schbul/sbj017 · Cited by 12
Ethics in Behavioral Genetics Research
DeCamp, M. W., & Sugarman, J. (2004) · Accountability in Research · doi:10.1080/725289013 · Cited by 12
“This is further complicated by a lack of universally accepted methods for determining decision-making capacity (as demonstrated for Alzheimer disease [Kim et al., 2001; Kim and Caine, 2002]).”
MethodCapacity to consent to research among patients with bipolar disorder
Misra, S., & Ganzini, L. K. (2003) · Journal of Affective Disorders · doi:10.1016/s0165-0327(03)00109-5 · Cited by 11
“Three ‘experts’ (from geriatric psychiatry and emergency psychiatry) listened to audiotapes of a subgroup of Alzheimer’s disease subjects’ interviews, made overall competency judgments, and agreed in 75% of cases (Kim et al., 2001).”
BackgroundDeliberating Clinical Research with Cognitively Impaired Older People and Their Relatives
van Rookhuijzen, A. E., Touwen, D. P., de Ruijter, W., Engberts, D. P., & van der Mast, R. C. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2013.04.005 · Cited by 11
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“It is tempting to turn to proxies as surrogate decision-makers when trying to obtain informed consent for the inclusion of a patient in a clinical trial, as is often the case in dementia [1], schizophrenia [13], and pediatric studies [14].”
BackgroundSubstitute Consent for Research Involving the Elderly: A Comparison Between Quebec and France
Bravo, G., Duguet, A., Dubois, M., Delpierre, C., & Vellas, B. J. (2008) · Journal of Cross-Cultural Gerontology · doi:10.1007/s10823-008-9070-x · Cited by 10
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Kim, S. Y., Mangino, D., & Nicolini, M. (2021) · Journal of Medical Ethics · doi:10.1136/medethics-2020-106091 · Cited by 10
Self-citationde Medeiros, K., Girling, L., & Berlinger, N. (2022) · Dementia · doi:10.1177/14713012211072501 · Cited by 9
“…ways to assess capacity for consent, such as through neuropsychological instruments or other formalized tests or by having the person demonstrate capacities in the context of some action specific to the research situation (Astell & Lee, 2013; Gilbert et al., 2017; Kim et al., 2001; Marson, 2001).”
BackgroundInfluentialResearch involving subjects with Alzheimer’s disease in Italy: the possible role of family members
Porteri, C., & Petrini, C. (2015) · BMC Medical Ethics · doi:10.1186/s12910-015-0009-9 · Cited by 9
“In addition, thresholds based on normative values or expert judgement can differ in terms of how many people are evaluated as incapable on at least one ability related to decision making [31], and agreement between standardised assessment methods and physicians’ judgement of competency may be poor for people with deme…”
BackgroundDunn, L. B., & Palmer, B. W. (2017) · The AMA Journal of Ethic · doi:10.1001/journalofethics.2017.19.7.nlit1-1707 · Cited by 9
“Studies of capacity to consent to research among people with dementia consistently demonstrate loss of capacity around the time of transitioning from mild to moderate dementia [17-19].”
BackgroundMoye, J. A., & Braun, M. (2010) · Elsevier eBooks · doi:10.1016/b978-0-12-374961-1.10022-3 · Cited by 9
MacArthur Competence Assessment Tools
Schaefer, L. A. (2012) · Springer eBooks · doi:10.1007/springerreference_184303 · Cited by 9
The U-ARE Protocol: A Pragmatic Approach to Decisional Capacity Assessment for Clinical Research
Hamilton, R. K. B., Phelan, C. H., Chin, N. A., Wyman, M. F., Lambrou, N. H., Cobb, N. L., Kind, A., Blazel, H. M., Asthana, S., & Gleason, C. E. (2019) · Journal of Alzheimer s Disease · doi:10.3233/jad-190457 · Cited by 8
“…the Mini-Mental State Examination or the Montreal Cognitive Assessment) or the use of hypothetical healthcare and safety-related scenarios would not be appropriate for assessing the more spe-cific ability to differentiate research from healthcare or the demands of research participation [30, 34–36].”
Liberté d’aller et venir en EHPAD : sommes-nous des hors la loi ?
Thomas, S. P., & Hazif‐Thomas, C. (2014) · NPG. Neurologie, psychiatrie, gériatrie/NPG · doi:10.1016/j.npg.2014.05.007 · Cited by 8
Wu, B.-J., Liao, H.-Y., Chen, H., & Lan, T. (2016) · Psychiatry Research · doi:10.1016/j.psychres.2016.01.020 · Cited by 8
“, understanding scores greater than 17, appreciation scores greater than 4 and reasoning scores greater than 5 (Kim et al., 2001).”
BackgroundEnhancing the informed consent process in psychiatric outpatients with a brief computer-based method
Morán‐Sánchez, I., Maldonado, A. L., & Pérez-Cárceles, M. D. (2016) · Psychiatry Research · doi:10.1016/j.psychres.2016.08.045 · Cited by 8
“The MacCAT-CR does not yield a limit score or a total score on the four abilities, but for practical purposes in some studies, cut-points have been determined to identify those who lack capacity (Carpenter et al., 2000; Stroup et al., 2011; Hein et al., 2014; Kim et al., 2001).”
Theory and Practice of Democratic Deliberation in Bioethics Research
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Self-citationHein, I. M., Daams, J. G., Troost, P. W., Lindeboom, R., & Lindauer, R. (2014) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd011099 · Cited by 8
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Competencia para votar en pacientes con demencia
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Ethically Relevant Differences in Advance Directives for Psychiatric and End-of-Life Care
Olsen, D. P. (2016) · Journal of the American Psychiatric Nurses Association · doi:10.1177/1078390316629958 · Cited by 7
Onofri, E., Mercuri, M., Archer, T., Ricciardi, M. R., & Ricci, S. (2016) · Clinical Interventions in Aging · doi:10.2147/cia.s94750 · Cited by 7
“Thus, even if a person has AD, diagnosis cannot be equated with decisional incapacity.(11) Nevertheless, it is essential to distinguish between patients and episodes on the basis of functionality and nonfunctionality.”
Informing Informed Consent for HIV Research
Campbell, L. M., Paolillo, E. W., Bryan, R., Marquie‐Beck, J., Moore, D. J., Nebeker, C., & Moore, R. C. (2020) · Journal of Empirical Research on Human Research Ethics · doi:10.1177/1556264620933766 · Cited by 6
“These tools have been useful particularly with populations with diminished cognitive capacity (Carpenter et al., 2000; Kim et al., 2001).”
MethodBarba, A. C., Gil‐Gregorio, P., & Candia, P. C. (2002) · Current Opinion in Psychiatry · doi:10.1097/00001504-200211000-00003 · Cited by 6
Appelbaum, P. S. (2004) · PubMed · Cited by 6
Barriers to Using Legally Authorized Representatives in Clinical Research with Older Adults
Mozersky, J. T., Solomon, E. D., Baldwin, K. A., Wroblewski, M. P., Parsons, M. V., Goodman, M. S., & DuBois, J. M. (2023) · Journal of Alzheimer s Disease Reports · doi:10.3233/adr-220103 · Cited by 5
Capacity to provide informed consent among adults with bipolar disorder
Klein, C. C., Jolson, M. B., Lazarus, M., Masterson, B. J., Blom, T. J., Adler, C. M., DelBello, M. P., & Strakowski, S. M. (2018) · Journal of Affective Disorders · doi:10.1016/j.jad.2018.08.049 · Cited by 5
Medicolegal Implications of Mild Neurocognitive Disorder
Bejenaru, A., & Ellison, J. M. (2020) · Journal of Geriatric Psychiatry and Neurology · doi:10.1177/0891988720957092 · Cited by 5
Child and Parent Understanding of Clinical Trials: The Semi-Structured Comprehension Interview
Paquette, E., Najita, J., Morley, D. S., & Joffe, S. (2014) · AJOB Empirical Bioethics · doi:10.1080/23294515.2014.948224 · Cited by 5
“The MacCAT-CR has been widely used in studies of decision-making capacity among adults (Carpenter et al. 2000; Casarett, Karlawish, and Hirschman 2003; Karlawish, Casarett, and James 2002; Kim et al. 2001; Kim, Cox, and Caine 2002; Moser et al. 2002).”
BackgroundMethodInfluentialMarco, M. C. D., Sani, G., Manfredi, G., Pacchiarotti, I., Savoja, V., Balbi, A., Mazzarini, L., Borriello, A., Kotzalidis, G. D., Tatarelli, R., et al. (2010) · Journal of Forensic Sciences · doi:10.1111/j.1556-4029.2010.01364.x · Cited by 5
“Two studies focused on patients with depression (15,16), two on patients with Alzheimer’s disease (17,18), one was limited to forensic patients (19), but most focused on the competence of patients with schizophrenia (16,20–28).”
BackgroundDecisional capacity in cognitively impaired patients with Parkinson disease
Marson, D. C., & Hershey, L. A. (2013) · Neurology · doi:10.1212/wnl.0b013e3182a05ccd · Cited by 5
Addressing the challenges of transforming laboratory advances into Alzheimer’s Disease treatments
Karlawish, J. H., & Clark, C. M. (2002) · Neurobiology of Aging · doi:10.1016/s0197-4580(02)00119-7 · Cited by 5
“From 30 to 60% of patients with mild AD (MMSE ≥ 18) have the capacity to consent to enroll in a clinical trial [36,38].”
BackgroundStrasser, S. M., O'Quin, K. E., Price, T., & Leyda, E. (2012) · Journal of Mental Health Research in Intellectual Disabilities · doi:10.1080/19315864.2011.589962 · Cited by 4
“Research has shown that older persons with Alzheimer's disease are less likely to be cognizant enough of their own condition to provide informed consent ( Kim, Caine, Currier, Leibovici, & Ryan, 2001 ); this holds true even when Alzheimer's patients' cognitive abilities are compared to older persons with schizophrenia…”
BackgroundAnxiety Impacts Consent Capacity to Treatment in Alzheimer's Disease
Kato, Y., Matsuoka, T., Eguchi, Y., Iiboshi, K., Koumi, H., Nakamura, K., Okabe, K., Nakaaki, S., Furukawa, T. A., Mimura, M., et al. (2021) · Frontiers in Psychology · doi:10.3389/fpsyg.2021.685430 · Cited by 5
Brune, C., Stentzel, U., Hoffmann, W. U., & van den Berg, N. (2021) · PLoS ONE · doi:10.1371/journal.pone.0256689 · Cited by 4
Capacity to consent to research: The evolution and current concepts
Peisah, C., Vollmer-Conna, U. S., & Kim, S. Y. H. (2012) · Asia-Pacific Psychiatry · doi:10.1111/j.1758-5872.2012.00210.x · Cited by 5
“Differentiating capable from incapable subjects remains an issue, despite the aid of these standardized tools as they yield dimension scores but not categorical outcomes (Kim et al., 2001).”
BackgroundSelf-citationHernández‐Marrero, P., Pereira, S. M., Araújo, J., & Carvalho, A. S. (2018) · Emerald Group Publishing Limited eBooks · doi:10.1108/s2398-601820180000004010 · Cited by 4
Interface of Law and Psychiatric Problems in the Elderly
Sivakumar, P. T., Mukku, S. S. R., Tiwari, S. C., Varghese, M., Gupta, S. K., & Rathi, L. (2022) · Indian Journal of Psychiatry · doi:10.4103/indianjpsychiatry.indianjpsychiatry_47_21 · Cited by 3
“[18] In “ The Indian Council for Medical Research National Ethical Guidelines for biomedical and health research’ persons with dementia are considered as vulnerable population.”
Preservation of the Capacity to Appoint a Proxy Decision Maker
Kim, S. Y. H., Karlawish, J. H., Kim, H. M., Wall, I. F., Bozoki, A., & Appelbaum, P. S. (2013) · Cited by 3
Self-citationAdvance Directives in Psychiatry
Vollmann, J. (2013) · International library of ethics, law, and the new medicine/The international library of ethics, law, and the new medicine · doi:10.1007/978-94-007-7377-6_3 · Cited by 3
Using nonevidence-based approaches to treat patients with alzheimer's disease.
Howe, E. G. (2009) · Europe PMC (PubMed Central) · Cited by 3
Ethical Considerations for the Conduct of Antidementia Trials in Canada
Fisk, J. D. (2007) · Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques · doi:10.1017/s0317167100005539 · Cited by 3
Judging by a Different Standard? Examining the Role of Rationality in Assessments of Mental Capacity
Banner, N. F. (2010) · CLOK (University of Central Lancashire) · Cited by 3
Hart, D. E. (2025) · The Journal of Law Medicine & Ethics · doi:10.1017/jme.2025.10185 · Cited by 3
“13 As identified by Kim, one study found that 40% of participants with mild cognitive impairment were judged incapable of providing informed consent, whereas another study found that 62% of individuals with mild to moderate Alzheimer ’ s did not meet the threshold on at least one standard of…”
Informed Consent and Competency
Naimark, D. M. J., Dunn, L. B., Haroun, A. M., & Morris, G. H. (2007) · Humana Press eBooks · doi:10.1007/978-1-59259-960-8_29 · Cited by 2
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
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