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.
“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]
Previous research demonstrated that the MacCAT scales provide the best results.
“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]
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
Marson, D. C. (1995) · Archives of Neurology · doi:10.1001/archneur.1995.00540340029010 · Cited by 347 · see citing works
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 · see citing works
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 · see citing works
Grisso, T., Appelbaum, P. S., Mulvey, E. P., & Fletcher, K. E. (1995) · Law and Human Behavior · doi:10.1007/bf01499322 · Cited by 253 · see citing works
Comparison of standards for assessing patients' capacities to make treatment decisions
Grisso, T., & Appelbaum, P. S. (1995) · American Journal of Psychiatry · doi:10.1176/ajp.152.7.1033 · Cited by 250 · see citing works
Janofsky, J. S., McCarthy, R. J., & Foistein, M. F. (1992) · Psychiatric Services · doi:10.1176/ps.43.2.132 · Cited by 213 · see citing works
Informed Consent: Assessment of Comprehension
Wirshing, D. A., Wirshing, W. C., Marder, S. R., Liberman, R. P., & Mintz, J. (1998) · American Journal of Psychiatry · doi:10.1176/ajp.155.11.1508 · Cited by 205 · see citing works
Assessment of competence to complete advance directives: validation of a patient centred approach
Fazel, S., Hope, T., & Jacoby, R. (1999) · BMJ · doi:10.1136/bmj.318.7182.493 · Cited by 83 · see citing works
Assessment of Mental Competency in Community-Dwelling Elderly
Schmand, B. A., Gouwenberg, B. M., Smit, J. H., & Jonker, C. (1999) · Alzheimer Disease & Associated Disorders · doi:10.1097/00002093-199904000-00004 · Cited by 77 · see citing works
Research With Cognitively Impaired Subjects
Bonnie, R. J. (1997) · Archives of General Psychiatry · doi:10.1001/archpsyc.1997.01830140013002 · Cited by 71 · see citing works
Advancing Research with Alzheimer Disease Subjects
High, D. M. (1993) · Alzheimer Disease & Associated Disorders · doi:10.1097/00002093-199307030-00005 · Cited by 21 · see citing works
Childress, J. F. (1999) · Accountability in Research · doi:10.1080/08989629908573945 · Cited by 18 · see citing works
Flagged first, then by citations
1 of the 20 references couldn’t be matched to a known paper.
Cited by
Sorted by citations
Defeating Alzheimer's disease and other dementias: a priority for European science and society
Winblad, B., Amouyel, P., Andrieu, S., Ballard, C., Brayne, C., Brodaty, H., Cedazo-Minguez, A., Dubois, B., Edvardsson, D., Feldman, H., et al. (2016) · The Lancet Neurology · doi:10.1016/s1474-4422(16)00062-4 · Cited by 1,676 · see citing works
A New Brief Instrument for Assessing Decisional Capacity for Clinical Research
Jeste, D. V., Palmer, B. W., Appelbaum, P. S., Golshan, S., Glorioso, D., Dunn, L. B., Kim, K., Meeks, T. W., & KRAEMER, H. C. (2007) · Archives of General Psychiatry · doi:10.1001/archpsyc.64.8.966 · Cited by 589 · see citing works
Assessing Decisional Capacity for Clinical Research or Treatment: A Review of Instruments
Dunn, L. B., Nowrangi, M. A., Palmer, B. W., Jeste, D. V., & Saks, E. R. (2006) · American Journal of Psychiatry · doi:10.1176/ajp.2006.163.8.1323 · Cited by 464 · see citing works
Herrera, A. P., Snipes, S. A., King, D. W., Vigil, I. T., Goldberg, D. S., & Weinberg, A. D. (2010) · American Journal of Public Health · doi:10.2105/ajph.2009.162982 · Cited by 393 · see citing works
Raymont, V., Bingley, W., Buchanan, A. W., David, A. S., Hayward, P., Wessely, S. C., & Hotopf, M. H. (2004) · The Lancet · doi:10.1016/s0140-6736(04)17224-3 · Cited by 390 · see citing works
Assessment of Decision-Making Capacity in Older Adults: An Emerging Area of Practice and Research
Moye, J. A., & Marson, D. C. (2007) · The Journals of Gerontology Series B · doi:10.1093/geronb/62.1.p3 · Cited by 332 · see citing works
Current State of Research on Decision-Making Competence of Cognitively Impaired Elderly Persons
Kim, S. Y. H., Karlawish, J. H., & Caine, E. D. (2002) · American Journal of Geriatric Psychiatry · doi:10.1097/00019442-200203000-00006 · Cited by 314 · see citing works
Self-citationReliability and Validity of the Evaluation to Sign Consent Measure
Resnick, B. M., Gruber‐Baldini, A. L., Pretzer‐Aboff, I., Galik, E. M., Buie, V., Russ, K., & Zimmerman, S. I. (2007) · The Gerontologist · doi:10.1093/geront/47.1.69 · Cited by 246 · see citing works
Developing a tool for measuring the decision-making competence of older adults.
Finucane, M. L., & Gullion, C. M. (2010) · Psychology and Aging · doi:10.1037/a0019106 · Cited by 202 · see citing works
Palmer, B. W., Dunn, L. B., Appelbaum, P. S., Mudaliar, S. R. D., Thal, L. J., Henry, R. R., Golshan, S., & Jeste, D. V. (2005) · Archives of General Psychiatry · doi:10.1001/archpsyc.62.7.726 · Cited by 197 · see citing works
The ability of persons with Alzheimer disease (AD) to make a decision about taking an AD treatment
Karlawish, J. H., Casarett, D., James, B. D., Xie, S. X., & Kim, S. Y. H. (2005) · Neurology · doi:10.1212/01.wnl.0000160000.01742.9d · Cited by 197 · see citing works
Self-citationThe capacity to consent to treatment and research: A review of standardized assessment tools
Sturman, E. D. (2005) · Clinical Psychology Review · doi:10.1016/j.cpr.2005.04.010 · Cited by 195 · see citing works
Why is it hard to make progress in assessing children's decision-making competence?
Hein, I. M., Troost, P. W., Broersma, A., de Vries, M. C., Daams, J. G., & Lindauer, R. J. L. (2015) · BMC Medical Ethics · doi:10.1186/1472-6939-16-1 · Cited by 191 · see citing works
“In adults, systematic studies using MacCAT-CR were conducted in populations of mentally compromised patients [29,30].”
BackgroundCompetence of mentally ill patients: a comparative empirical study
VOLLMANN, J., BAUER, A., DANKER-HOPFE, H., & HELMCHEN, H. (2003) · Psychological Medicine · doi:10.1017/s0033291703008389 · Cited by 159 · see citing works
Challenges in Conducting Qualitative Research with Individuals with Dementia
Beuscher, L. M., & Grando, V. T. (2009) · Research in Gerontological Nursing · doi:10.3928/19404921-20090101-04 · Cited by 157 · see citing works
Consent and assent to participate in research from people with dementia
Slaughter, S., Cole, D., Jennings, E., & Reimer, M. A. (2007) · Nursing Ethics · doi:10.1177/0969733007071355 · Cited by 150 · see citing works
Kim, S. Y. H., & Caine, E. D. (2002) · Psychiatric Services · doi:10.1176/appi.ps.53.10.1322 · Cited by 150 · see citing works
Self-citationAssessment of capacity in an aging society.
Moye, J. A., Marson, D. C., & Edelstein, B. A. (2013) · American Psychologist · doi:10.1037/a0032159 · Cited by 143 · see citing works
Karlawish, J. H., Casarett, D., & James, B. D. (2002) · Journal of the American Geriatrics Society · doi:10.1046/j.1532-5415.2002.50615.x · Cited by 129 · see citing works
Measuring Decision-Making Capacity in Cognitively Impaired Individuals
Karlawish, J. H. (2007) · Neurosignals · doi:10.1159/000109763 · Cited by 121 · see citing works
Medical decision-making capacity in mild cognitive impairment
Okonkwo, O. C., Griffith, H. R., Copeland, J., Belue, K., Lanza, S., ZAMRINI, E. Y., Harrell, L. E., Brockington, J. C., Clark, D. G., Raman, R., et al. (2008) · Neurology · doi:10.1212/01.wnl.0000334301.32358.48 · Cited by 116 · see citing works
Hirschman, K. B., Joyce, C. M., James, B. D., Xie, S. X., & Karlawish, J. H. (2005) · The Gerontologist · doi:10.1093/geront/45.3.381 · Cited by 112 · see citing works
Lai, J. M., & Karlawish, J. H. (2007) · American Journal of Geriatric Psychiatry · doi:10.1097/01.jgp.0000239246.10056.2e · Cited by 109 · see citing works
Moye, J. A., Gurrera, R. J., Karel, M. J., Edelstein, B. A., & O'Connell, C. (2005) · Clinical Psychology Review · doi:10.1016/j.cpr.2005.04.013 · Cited by 103 · see citing works
Decisional Capacity for Research Participation in Individuals with Mild Cognitive Impairment
Jefferson, A. L., Lambe, S. A., Moser, D. J., Byerly, L. K., Ozonoff, A., & Karlawish, J. H. (2008) · Journal of the American Geriatrics Society · doi:10.1111/j.1532-5415.2008.01752.x · Cited by 99 · see citing works
Palmer, B. W. (2005) · Schizophrenia Bulletin · doi:10.1093/schbul/sbj002 · Cited by 99 · see citing works
Proxy and Surrogate Consent in Geriatric Neuropsychiatric Research: Update and Recommendations
Kim, S. Y. H., Appelbaum, P. S., Jeste, D. V., & Olin, J. T. (2004) · American Journal of Psychiatry · doi:10.1176/appi.ajp.161.5.797 · Cited by 94 · see citing works
Self-citationCognitive impairment and PD patients' capacity to consent to research
Karlawish, J. H., Cary, M. S., Moelter, S. T., Siderowf, A. D., Sullo, E., Xie, S. X., & Weintraub, D. A. (2013) · Neurology · doi:10.1212/wnl.0b013e3182a05ba5 · Cited by 91 · see citing works
Downing, L. J., Caprio, T. V., & Lyness, J. M. (2013) · Current Psychiatry Reports · doi:10.1007/s11920-013-0365-4 · Cited by 90 · see citing works
Research Involving Cognitively Impaired Adults
Karlawish, J. H. (2003) · New England Journal of Medicine · doi:10.1056/nejmsb030172 · Cited by 89 · see citing works
Competence to Consent to Research Among Long-Stay Inpatients With Chronic Schizophrenia
Kovnick, J. A., Appelbaum, P. S., Hoge, S. K., & Leadbetter, R. A. (2003) · Psychiatric Services · doi:10.1176/appi.ps.54.9.1247 · Cited by 86 · see citing works
Marson, D. C. (2005) · Schizophrenia Bulletin · doi:10.1093/schbul/sbj027 · Cited by 84 · see citing works
Determining when impairment constitutes incapacity for informed consent in schizophrenia research
Kim, S. Y. H., Appelbaum, P. S., Swan, J., Stroup, T. S., McEvoy, J. P., Goff, D. C., Jeste, D. V., Lamberti, J. S., Leibovici, A., & Caine, E. D. (2007) · British Journal of Psychiatry · doi:10.1192/bjp.bp.106.033324 · Cited by 84 · see citing works
Self-citationHow the Powerful Decide: Access to Research Participation by those at the Margins
McDonald, K., & Keys, C. B. (2008) · American Journal of Community Psychology · doi:10.1007/s10464-008-9192-x · Cited by 83 · see citing works
Instruments to assess decision-making capacity: an overview
Vellinga, A., Smit, J. H., van Leeuwen, E., van Tilburg, W., & Jonker, C. (2004) · International Psychogeriatrics · doi:10.1017/s1041610204000808 · Cited by 81 · see citing works
Understanding of informed consent by demented individuals
Buckles, V., Powlishta, K. K., Palmer, J. L., Coats, M. A., Hosto, T. L., Buckley, A. H., & Morris, J. C. (2003) · Neurology · doi:10.1212/01.wnl.0000098933.34804.fc · Cited by 81 · see citing works
Kim, S. Y. H., Cox, C., & Caine, E. D. (2002) · American Journal of Psychiatry · doi:10.1176/appi.ajp.159.5.797 · Cited by 80 · see citing works
Self-citationFisher, C. B. (2003) · Mental Retardation and Developmental Disabilities Research Reviews · doi:10.1002/mrdd.10052 · Cited by 80 · see citing works
The ethics of informed consent in Alzheimer disease research
Kim, S. Y. H. (2011) · Nature Reviews Neurology · doi:10.1038/nrneurol.2011.76 · Cited by 79 · see citing works
Self-citationWhat do people at risk for Alzheimer disease think about surrogate consent for research?
Kim, S. Y. H., Kim, H. M., McCallum, C., & Tariot, P. N. (2005) · Neurology · doi:10.1212/01.wnl.0000183144.61428.73 · Cited by 79 · see citing works
Self-citationAssessment of Therapeutic Misconception in Older Schizophrenia Patients With a Brief Instrument
Dunn, L. B., Palmer, B. W., Keehan, M., Jeste, D. V., & Appelbaum, P. S. (2006) · American Journal of Psychiatry · doi:10.1176/appi.ajp.163.3.500 · Cited by 78 · see citing works
Assessing Medical Decision-Making Competence in Transgender Youth
Vrouenraets, L. J. J. J., de Vries, A. L. C., de Vries, M. C., van der Miesen, A. I. R., & Hein, I. M. (2021) · PEDIATRICS · doi:10.1542/peds.2020-049643 · Cited by 77 · see citing works
Warner, J., McCarney, R., Griffin, M., Hill, K., & Fisher, P. (2008) · Journal of Medical Ethics · doi:10.1136/jme.2006.019786 · Cited by 75 · see citing works
Assessing capacity to consent for research in cognitively impaired older patients
Gilbert, T., Bosquet, A., Thomas-Antérion, C., Bonnefoy, M., & Saux, O. L. (2017) · Clinical Interventions in Aging · doi:10.2147/cia.s141905 · Cited by 73 · see citing works
Surrogate consent for dementia research
Kim, S. Y. H., Kim, H. M., Langa, K. M., Karlawish, J. H., Knopman, D. S., & Appelbaum, P. S. (2009) · Neurology · doi:10.1212/01.wnl.0000339039.18931.a2 · Cited by 72 · see citing works
Self-citationInformed consent to psychotherapy: Protecting the dignity and respecting the autonomy of patients
Fisher, C. B., & Oransky, M. (2008) · Journal of Clinical Psychology · doi:10.1002/jclp.20472 · Cited by 71 · see citing works
Doloplus-2, a valid tool for behavioural pain assessment?
Hølen, J. C., Saltvedt, I. T., Fayers, P. M., Hjermstad, M. J., Loge, J. H., & Kaasa, S. (2007) · BMC Geriatrics · doi:10.1186/1471-2318-7-29 · Cited by 68 · see citing works
Advance Directives for Health Care and Research
Bravo, G., Dubois, M., & Pâquet, M. (2003) · Alzheimer Disease & Associated Disorders · doi:10.1097/00002093-200310000-00004 · Cited by 67 · see citing works
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. (2011) · Archives of General Psychiatry · doi:10.1001/archgenpsychiatry.2010.191 · Cited by 64 · see citing works
Self-citationAssessment of Decision-Making Capacity: Views and Experiences of Consultation Psychiatrists
Seyfried, L. S., Ryan, K. A., & Kim, S. Y. H. (2012) · Psychosomatics · doi:10.1016/j.psym.2012.08.001 · Cited by 60 · see citing works
Self-citationCapacity of Persons With Mental Retardation to Consent to Participate in Randomized Clinical Trials
Fisher, C. B., Cea, C. D., Davidson, P. W., & Fried, A. L. (2006) · American Journal of Psychiatry · doi:10.1176/ajp.2006.163.10.1813 · Cited by 59 · see citing works
Determining medical decision-making capacity in brain tumor patients: why and how?
Pace, A., Koekkoek, J. A. F., van den Bent, M. J., Bulbeck, H., Fleming, J., Grant, R., Golla, H., Henriksson, R., Kerrigan, S., Marosi, C., et al. (2020) · Neuro-Oncology Practice · doi:10.1093/nop/npaa040 · Cited by 56 · see citing works
Mayo, A. M., & Wallhagen, M. I. (2009) · Research in Gerontological Nursing · doi:10.3928/19404921-20090401-08 · Cited by 55 · see citing works
A review of ethical issues in dementia
Johnson, R., Karlawish, J. H., & Brodaty, H. (2015) · International Psychogeriatrics · doi:10.1017/s1041610215000848 · Cited by 55 · see citing works
Hølen, J. C., Saltvedt, I. T., Fayers, P. M., Bjørnnes, M., Stenseth, G., Hval, B., Filbet, M., Loge, J. H., & Kaasa, S. (2005) · Palliative Medicine · doi:10.1191/0269216305pm1031oa · Cited by 55 · see citing works
Dunn, L. B., Palmer, B. W., Appelbaum, P. S., Saks, E. R., Aarons, G. A., & Jeste, D. V. (2007) · Schizophrenia Research · doi:10.1016/j.schres.2006.08.005 · Cited by 54 · see citing works
Identifying ambulatory cancer patients at risk of impaired capacity to consent to research
Casarett, D., Karlawish, J. H., & Hirschman, K. B. (2003) · Journal of Pain and Symptom Management · doi:10.1016/s0885-3924(03)00221-5 · Cited by 54 · see citing works
Kim, S. Y. H. (2005) · Schizophrenia Bulletin · doi:10.1093/schbul/sbi062 · Cited by 53 · see citing works
Self-citationD, D. M. M., Palmer, B. W., Dunn, L. B., Landes, R. D., Ghormley, C. O., Beck, C. K., Golshan, S., Blevins, D., & Jeste, D. V. (2007) · American Journal of Geriatric Psychiatry · doi:10.1097/jgp.0b013e31802dd379 · Cited by 52 · see citing works
Jeste, D. V., & Saks, E. R. (2006) · Behavioral Sciences & the Law · doi:10.1002/bsl.707 · Cited by 52 · see citing works
Vellinga, A., Smit, J. H., van Leeuwen, E., van Tilburg, W., & Jonker, C. (2004) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.1139 · Cited by 51 · see citing works
Decision‐making capacity and disaster research
Rosenstein, D. L. (2004) · Journal of Traumatic Stress · doi:10.1023/b:jots.0000048950.36359.a2 · Cited by 51 · see citing works
Competence and Vulnerability in Biomedical Research
Bielby, P. (2008) · International library of ethics, law, and the new medicine/The international library of ethics, law, and the new medicine · doi:10.1007/978-1-4020-8604-5 · Cited by 51 · see citing works
Moberg, P. J., & Rick, J. H. (2008) · Neurorehabilitation · doi:10.3233/nre-2008-23504 · Cited by 50 · see citing works
Rubright, J. D., Casarett, D., Gur, R. C., Xie, S. X., Karlawish, J. H., & Sankar, P. L. (2010) · American Journal of Geriatric Psychiatry · doi:10.1097/jgp.0b013e3181dd1c3b · Cited by 49 · see citing works
Ethics in medical research: General principles with special reference to psychiatry research
Avasthi, A., Ghosh, A., Sarkar, S., & Grover, S. (2013) · Indian Journal of Psychiatry · doi:10.4103/0019-5545.105525 · Cited by 48 · see citing works
Enhancing the informed consent process: a conceptual overview
Eyler, L. T., & Jeste, D. V. (2006) · Behavioral Sciences & the Law · doi:10.1002/bsl.691 · Cited by 49 · see citing works
How Important Is ‘Accuracy’ of Surrogate Decision-Making for Research Participation?
Kim, S. Y. H., Kim, H. M., Ryan, K. A., Appelbaum, P. S., Knopman, D. S., Damschroder, L. J., & Vries, R. G. D. (2013) · PLoS ONE · doi:10.1371/journal.pone.0054790 · Cited by 46 · see citing works
Self-citationEnrolling Decisionally Impaired Adults in Clinical Research
Chen, D. T., Miller, F. G., & Rosenstein, D. L. (2002) · Medical Care · doi:10.1097/00005650-200209001-00004 · Cited by 45 · see citing works
Karlawish, J. H., Kim, S. Y. H., Knopman, D. S., van Dyck, C. H., James, B. D., & Marson, D. C. (2008) · American Journal of Geriatric Psychiatry · doi:10.1097/jgp.0b013e318172b406 · Cited by 45 · see citing works
Self-citationDunn, L. B., Fisher, S. R., Hantke, M., Appelbaum, P. S., Dohan, D. P., Young, J. P., & Roberts, L. W. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2012.11.014 · Cited by 45 · see citing works
Kim, S. Y. H., Appelbaum, P. S., Kim, H. M., Wall, I. F., Bourgeois, J. A., Frankel, B. L., Hails, K. C., Rundell, J. R., Seibel, K. M., & Karlawish, J. H. (2011) · Psychosomatics · doi:10.1016/j.psym.2011.01.012 · Cited by 44 · see citing works
Self-citationInformed consent for research participation in frail older persons
Barron, J. S., Duffey, P. L., Byrd, L. J., Campbell, R., & Ferrucci, L. (2004) · Aging Clinical and Experimental Research · doi:10.1007/bf03324536 · Cited by 45 · see citing works
Do Clinicians Follow a Risk-Sensitive Model of Capacity-Determination? An Experimental Video Survey
Kim, S. Y. H., Caine, E. D., Swan, J. G., & Appelbaum, P. S. (2006) · Psychosomatics · doi:10.1176/appi.psy.47.4.325 · Cited by 44 · see citing works
Self-citationAssessing decision-making capacity at end of life
Kolva, E., Rosenfeld, B. D., Brescia, R. J., & Comfort, C. P. (2014) · General Hospital Psychiatry · doi:10.1016/j.genhosppsych.2014.02.013 · Cited by 43 · see citing works
Wayfinding in ageing and Alzheimer's disease within a virtual senior residence: study protocol
Davis, R., & Ohman, J. M. (2016) · Journal of Advanced Nursing · doi:10.1111/jan.12945 · Cited by 42 · see citing works
The effects of normal aging on multiple aspects of financial decision-making
Bangma, D. F., Fuermaier, A. B. M., Tucha, L., Tucha, O. M., & Koerts, J. (2017) · PLoS ONE · doi:10.1371/journal.pone.0182620 · Cited by 43 · see citing works
Determinants of Capacity to Consent to Research on Alzheimer’s Disease
Palmer, B. W., Harmell, A. L., Pinto, L. L., Dunn, L. B., Kim, S. Y. H., Golshan, S., & Jeste, D. V. (2016) · Clinical Gerontologist · doi:10.1080/07317115.2016.1197352 · Cited by 40 · see citing works
Self-citationVoluntary Consent in Correctional Settings: Do Offenders Feel Coerced to Participate in Research?
Edens, J. F., Epstein, M. K., Stiles, P. G., & Poythress, N. G. (2011) · Behavioral Sciences & the Law · doi:10.1002/bsl.1014 · Cited by 39 · see citing works
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Mental capacity and consent to treatment in psychiatric patients: the state of the research
Candia, P. C., & Barba, A. C. (2011) · Current Opinion in Psychiatry · doi:10.1097/yco.0b013e328349bba5 · Cited by 38 · see citing works
Alternative Decision-Makers' Perspectives on Assent and Dissent for Dementia Research
Overton, E. E., Appelbaum, P. S., Fisher, S. R., Dohan, D. P., Roberts, L. W., & Dunn, L. B. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2013.01.027 · Cited by 38 · see citing works
Deliberative assessment of surrogate consent in dementia research
Kim, S. Y. H., Uhlmann, R. A., Appelbaum, P. S., Knopman, D. S., Kim, H. M., Damschroder, L. J., Beattie, E., Struble, L. M., & Vries, R. G. D. (2010) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2009.06.001 · Cited by 38 · see citing works
Self-citationDecisional Capacity of Depressed Elderly to Consent to Electroconvulsive Therapy
Lapid, M. I., Rummans, T. A., Pankratz, V. S., & Appelbaum, P. S. (2004) · Journal of Geriatric Psychiatry and Neurology · doi:10.1177/0891988703261996 · Cited by 38 · see citing works
La capacidad de los pacientes para tomar decisiones: una tarea todavía pendiente
Simón-Lorda, P. (2008) · Revista de la Asociación Española de Neuropsiquiatría · doi:10.4321/s0211-57352008000200006 · Cited by 39 · see citing works
Evaluation of the Capacity to Appoint a Healthcare Proxy
Moye, J. A., Sabatino, C. P., & Brendel, R. W. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2012.09.001 · Cited by 37 · see citing works
Declining medical decision‐making capacity in mild AD: a two‐year longitudinal study
Huthwaite, J. S., Martin, R. C., Griffith, H. R., Anderson, B., Harrell, L. E., & Marson, D. C. (2006) · Behavioral Sciences & the Law · doi:10.1002/bsl.701 · Cited by 37 · see citing works
The capacity to appoint a proxy and the possibility of concurrent proxy directives
Kim, S. Y. H., & Appelbaum, P. S. (2006) · Behavioral Sciences & the Law · doi:10.1002/bsl.702 · Cited by 37 · see citing works
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Dunn, L. B. (2006) · Behavioral Sciences & the Law · doi:10.1002/bsl.698 · Cited by 36 · see citing works
Decision‐making capacity in elderly, terminally ill patients with cancer
Sorger, B., Rosenfeld, B. D., Pessin, H., Kosinski, A., & Cimino, J. E. (2007) · Behavioral Sciences & the Law · doi:10.1002/bsl.764 · Cited by 35 · see citing works
Meulenbroek, O., Vernooij-Dassen, M. J. F. J., Kessels, R. P. C., Graff, M. J. L., Sjögren, M. J. C., Schalk, B. W. M., Hoogsteen-Ossewaarde, M. E., Claassen, J. A. H. R., Melis, R. J. F., & Rikkert, M. G. M. O. (2010) · European Geriatric Medicine · doi:10.1016/j.eurger.2010.01.009 · Cited by 35 · see citing works
Effect of public deliberation on attitudes toward surrogate consent for dementia research
Kim, S. Y. H., Kim, H. M., Knopman, D. S., Vries, R. G. D., Damschroder, L. J., & Appelbaum, P. S. (2011) · Neurology · doi:10.1212/wnl.0b013e31823648cb · Cited by 33 · see citing works
Self-citationPublic's Approach to Surrogate Consent for Dementia Research: Cautious Pragmatism
Vries, R. G. D., Ryan, K. A., Stanczyk, A., Appelbaum, P. S., Damschroder, L. J., Knopman, D. S., & Kim, S. Y. H. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2012.11.010 · Cited by 33 · see citing works
Self-citationViaña, J. N. M., Vickers, J. C., Cook, M. J., & Gilbert, F. (2017) · Neurobiology of Aging · doi:10.1016/j.neurobiolaging.2017.03.001 · Cited by 33 · see citing works
CLINICIAN BELIEFS AND PRACTICES IN DEMENTIA CARE: IMPLICATIONS FOR HEALTH EDUCATORS
Meuser, T. M., Boise, L., & Morris, J. C. (2004) · Educational Gerontology · doi:10.1080/03601270490445104 · Cited by 33 · see citing works
Capacity to make medical treatment decisions in multiple sclerosis: A potentially remediable deficit
Basso, M. R., Candilis, P. J., Johnson, J., Ghormley, C. O., Combs, D. R., & Ward, T. A. (2010) · Journal of Clinical and Experimental Neuropsychology · doi:10.1080/13803391003683062 · Cited by 32 · see citing works
Gupta, U. C., & Kharawala, S. (2012) · Perspectives in Clinical Research · doi:10.4103/2229-3485.92301 · Cited by 32 · see citing works
Jeste, D. V., Dunn, L. B., Palmer, B. W., Saks, E. R., Halpain, M. C., Cook, A., Appelbaum, P. S., & Schneiderman, L. J. (2003) · Psychopharmacology · doi:10.1007/s00213-003-1507-x · Cited by 32 · see citing works
Beattie, E. (2009) · Research in Gerontological Nursing · doi:10.3928/19404921-20090401-01 · Cited by 31 · see citing works
Black, B. S., Brandt, J., Rabins, P. V., Samus, Q. M., Steele, C. D., Lyketsos, C. G., & Rosenblatt, A. (2007) · American Journal of Geriatric Psychiatry · doi:10.1097/jgp.0b013e318157cabd · Cited by 31 · see citing works
- 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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