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Table of Contents
Vol. 16, No. 1, 2008
Issue release date: December 2007
Section title: Paper
Free Access
Neurosignals 2008;16:91–98
(DOI:10.1159/000109763)

Measuring Decision-Making Capacity in Cognitively Impaired Individuals

Karlawish J.
Departments of Medicine and Medical Ethics, Institute on Aging, Leonard David Institute of Health Economics, Alzheimer’s Disease Core Center, Center for Bioethics, Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania School of Medicine, Philadelphia, Pa., USA
email Corresponding Author

Abstract

Cognitive and functional losses are only part of the spectrum of disability experienced by persons with Alzheimer’s disease and related dementias. They also experience losses in the ability to make decisions, known as decision-making capacity. Researchers have made substantial progress in developing a model of capacity assessment that rests upon the concept of the 4 decision-making abilities: understanding, appreciation, choice and reasoning. Empirical research has increased our understanding of the effects of late-life cognitive impairment on a person’s ability to make decisions. This review examines studies of the capacity to consent to treatment, research and the management of everyday functional abilities. The results illustrate the clinical phenotype of the patient who retains the capacity to consent. They also suggest that measures of capacity can improve how researchers measure the benefits of cognitive enhancements and stage dementia.

© 2008 S. Karger AG, Basel


  

Key Words

  • Cognitive impairment
  • Decision-making capacity
  • Alzheimer’s disease
  • Medical ethics

References

  1. Cigolle CT, Langa KM, Kabeto MU, Tian Z, Blaum CS: Geriatric conditions and disability: the Health and Retirement Study. Ann Intern Med 2007;147:156–164.
  2. McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan E: Clinical diagnosis of Alzheimer’s disease. Report of the NINCDS-ADRDA work group under auspices of the Department of Health and Human Services Task Force on Alzheimer’s Disease. Neurology 1984;34:939–944.
  3. Stern Y, Liu X, Albert M, et al: Application of a growth curve approach to modeling the progression of Alzheimer’s disease. J Gerontol A Biol Sci Med Sci 1996;51:M179–M184.
  4. Morris JC: The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology 1993;43:2412–2414.
  5. Galasko D, Bennett D, Sano M, et al: An inventory to assess activities of daily living for clinical trials in Alzheimer’s disease. The Alzheimer’s Disease Cooperative Study. Alzheimer Dis Assoc Disord 1997;11(suppl 2):S33–S39.
  6. Lawton MP, Brody EM: Assessment of older people: Self-maintaining and instrumental activities of daily living. Gerontologist 1969;9:179–186.
  7. Appelbaum PS, Grisso T: Assessing patients’ capacities to consent to treatment. N Engl J Med 1988;319:1635–1638.
  8. Grisso T, Appelbaum PS: Assessing patients’ capacities to consent to treatment; in Grisso T, Appelbaum (eds): Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York, Oxford University Press, 1998, pp 77–100.
  9. Marson DC, Ingram KK, Cody HA, Harrell LE: Assessing the competency of patients with Alzheimer’s disease under different legal standards: a prototype instrument. Arch Neurol 1995;52:949–954.
  10. Yesavage JA, Brink TL, Rose TL, et al: Development and validation of a geriatric depression screening scale: a preliminary report. J Psychiatr Res 1983;17:37–49.
  11. Karlawish JH, Schmitt FA: Why physicians need to become more proficient in assessing their patients’ competency and how they can achieve this. J Am Geriatr Soc 2000;48:1014–1016.
  12. Grisso T, Appelbaum PS: Making judgments about patients’ competence; in Grisso T, Appelbaum PS (eds): Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York, Oxford University Press, 1998, pp 127–148.
  13. Grisso T, Appelbaum PS (eds): Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Care Professionals. New York, Oxford University Press, 1998.
  14. Streiner DL, Norman GR: Health Measurement Scales: A Practical Guide to Their Development and Use, ed 2. New York, Oxford Medical Publications, 1995.
  15. Polythress N, Nicholson R, Otto RK, et al: The MacArthur Competence Assessment Tool – Criminal Adjudication: Professional Manual. Odessa, Psychological Assessment Resources, 1999.
  16. Appelbaum PS, Bonnie RJ, Karlawish JH: The capacity to vote of persons with Alzheimer’s disease. Am J Psychiatry 2005;162:2094–2100.
  17. Karlawish JH, Casarett DJ, James BD, Xie SX, Kim SY: The ability of persons with Alzheimer disease (AD) to make a decision about taking an AD treatment. Neurology 2005;64:1514–1519.
  18. Orgogozo JM, Gilman S, Dartigues JF, et al: Subacute meningoencephalitis in a subset of patients with AD after Aβ42 immunization. Neurology 2003;61:46–54.
  19. Starkstein SE, Sabe L, Chemerinski E, Jason L, Leiguarda R: Two domains of anosognosia in Alzheimer’s disease. J Neurol Neurosurg Psychiatry 1996;61:485–490.
  20. Petersen RC, Smith GE, Waring SC, Ivnik RJ, Tangelos EG, Kokmen E: Mild cognitive impairment: clinical characterization and outcome. Arch Neurol 1999;56:303–308.
  21. Storandt M, Grant EA, Miller JP, Morris JC: Rates of progression in mild cognitive impairment and early Alzheimer’s disease. Neurology 2002;59:1034–1041.
  22. Folstein MF, Folstein SE, McHugh PR: ‘Mini-mental state’: a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975;12:189–198.
  23. Grisso T, Appelbaum PS: The MacArthur Competence Assessment Tool – Treatment. Sarasota, Professional Resources Press, 1998.
  24. Karlawish JHT, Klocinski J, Merz JF, Clark CM, Asch D: Caregivers’ preferences for the treatment of patients with Alzheimer’s disease. Neurology 2000;55:1008–10014.
  25. Kim SY, Caine ED, Currier GW, Leibovici A, Ryan JM: Assessing the competence of persons with Alzheimer’s disease in providing informed consent for participation in research. Am J Psychiatry 2001;158:712–717.
  26. Karlawish JHT, Casarett DJ, James BD: Alzheimer’s disease patients’ and caregivers’ capacity, competency and reasons to enroll in an early phase Alzheimer’s disease clinical trial. J Am Geriatr Soc 2002;50:2019–2024.
  27. Appelbaum PS, Grisso T: The MacArthur Competence Assessment Tool – Clinical Research. Sarasota, Professional Resources Press, 2000.
  28. Department of Health and Human Services: Common rule, 45 CFR 46. Federal policy for the protection of human subjects: notices and rules. Federal Register 1991;56:28003–28032.

    External Resources

  29. Cutler NR, Sramek JJ: Guidelines for conducting bridging studies in Alzheimer disease. Alzheimer Dis Assoc Disord 1998;12:88–92.
  30. Lai JM, Karlawish J: Assessing the capacity to make everyday decisions: a guide for clinicians and an agenda for future research. Am J Geriatr Psychiatry 2007;15:101–111.
  31. Lai JM, Cooney LM, Gill TM, Bradley EH, Hawkins KA, Karlawish JH: Evaluating the ability of older persons with cognitive deficits to solve problems in performing their activities of daily living. J Am Geriatr Soc 2007;55:D55.
  32. Marson DC, Earnst KS, Jamil F, Bartolucci A, Harrell LE: Consistency of physicians’ legal standard and personal judgments of competency in patients with Alzheimer’s disease. J Am Geriatr Soc 2000;48:911–918.

  

Author Contacts

Jason Karlawish, MD
University of Pennsylvania
Institute on Aging, 3615 Chestnut Street
Philadelphia, PA 19104 (USA)
Tel. +1 215 898 8997, Fax +1 215 662 7812, E-Mail Jason.karlawish@uphs.upenn.edu

  

Article Information

Published online: December 5, 2007
Number of Print Pages : 8
Number of Figures : 0, Number of Tables : 0, Number of References : 32

  

Publication Details

Neurosignals

Vol. 16, No. 1, Year 2008 (Cover Date: December 2007)

Journal Editor: Ip, N.Y. (Hong Kong)
ISSN: 1424–862X (print), 1424–8638 (Online)

For additional information: http://www.karger.com/NSG


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References

  1. Cigolle CT, Langa KM, Kabeto MU, Tian Z, Blaum CS: Geriatric conditions and disability: the Health and Retirement Study. Ann Intern Med 2007;147:156–164.
  2. McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan E: Clinical diagnosis of Alzheimer’s disease. Report of the NINCDS-ADRDA work group under auspices of the Department of Health and Human Services Task Force on Alzheimer’s Disease. Neurology 1984;34:939–944.
  3. Stern Y, Liu X, Albert M, et al: Application of a growth curve approach to modeling the progression of Alzheimer’s disease. J Gerontol A Biol Sci Med Sci 1996;51:M179–M184.
  4. Morris JC: The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology 1993;43:2412–2414.
  5. Galasko D, Bennett D, Sano M, et al: An inventory to assess activities of daily living for clinical trials in Alzheimer’s disease. The Alzheimer’s Disease Cooperative Study. Alzheimer Dis Assoc Disord 1997;11(suppl 2):S33–S39.
  6. Lawton MP, Brody EM: Assessment of older people: Self-maintaining and instrumental activities of daily living. Gerontologist 1969;9:179–186.
  7. Appelbaum PS, Grisso T: Assessing patients’ capacities to consent to treatment. N Engl J Med 1988;319:1635–1638.
  8. Grisso T, Appelbaum PS: Assessing patients’ capacities to consent to treatment; in Grisso T, Appelbaum (eds): Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York, Oxford University Press, 1998, pp 77–100.
  9. Marson DC, Ingram KK, Cody HA, Harrell LE: Assessing the competency of patients with Alzheimer’s disease under different legal standards: a prototype instrument. Arch Neurol 1995;52:949–954.
  10. Yesavage JA, Brink TL, Rose TL, et al: Development and validation of a geriatric depression screening scale: a preliminary report. J Psychiatr Res 1983;17:37–49.
  11. Karlawish JH, Schmitt FA: Why physicians need to become more proficient in assessing their patients’ competency and how they can achieve this. J Am Geriatr Soc 2000;48:1014–1016.
  12. Grisso T, Appelbaum PS: Making judgments about patients’ competence; in Grisso T, Appelbaum PS (eds): Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York, Oxford University Press, 1998, pp 127–148.
  13. Grisso T, Appelbaum PS (eds): Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Care Professionals. New York, Oxford University Press, 1998.
  14. Streiner DL, Norman GR: Health Measurement Scales: A Practical Guide to Their Development and Use, ed 2. New York, Oxford Medical Publications, 1995.
  15. Polythress N, Nicholson R, Otto RK, et al: The MacArthur Competence Assessment Tool – Criminal Adjudication: Professional Manual. Odessa, Psychological Assessment Resources, 1999.
  16. Appelbaum PS, Bonnie RJ, Karlawish JH: The capacity to vote of persons with Alzheimer’s disease. Am J Psychiatry 2005;162:2094–2100.
  17. Karlawish JH, Casarett DJ, James BD, Xie SX, Kim SY: The ability of persons with Alzheimer disease (AD) to make a decision about taking an AD treatment. Neurology 2005;64:1514–1519.
  18. Orgogozo JM, Gilman S, Dartigues JF, et al: Subacute meningoencephalitis in a subset of patients with AD after Aβ42 immunization. Neurology 2003;61:46–54.
  19. Starkstein SE, Sabe L, Chemerinski E, Jason L, Leiguarda R: Two domains of anosognosia in Alzheimer’s disease. J Neurol Neurosurg Psychiatry 1996;61:485–490.
  20. Petersen RC, Smith GE, Waring SC, Ivnik RJ, Tangelos EG, Kokmen E: Mild cognitive impairment: clinical characterization and outcome. Arch Neurol 1999;56:303–308.
  21. Storandt M, Grant EA, Miller JP, Morris JC: Rates of progression in mild cognitive impairment and early Alzheimer’s disease. Neurology 2002;59:1034–1041.
  22. Folstein MF, Folstein SE, McHugh PR: ‘Mini-mental state’: a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975;12:189–198.
  23. Grisso T, Appelbaum PS: The MacArthur Competence Assessment Tool – Treatment. Sarasota, Professional Resources Press, 1998.
  24. Karlawish JHT, Klocinski J, Merz JF, Clark CM, Asch D: Caregivers’ preferences for the treatment of patients with Alzheimer’s disease. Neurology 2000;55:1008–10014.
  25. Kim SY, Caine ED, Currier GW, Leibovici A, Ryan JM: Assessing the competence of persons with Alzheimer’s disease in providing informed consent for participation in research. Am J Psychiatry 2001;158:712–717.
  26. Karlawish JHT, Casarett DJ, James BD: Alzheimer’s disease patients’ and caregivers’ capacity, competency and reasons to enroll in an early phase Alzheimer’s disease clinical trial. J Am Geriatr Soc 2002;50:2019–2024.
  27. Appelbaum PS, Grisso T: The MacArthur Competence Assessment Tool – Clinical Research. Sarasota, Professional Resources Press, 2000.
  28. Department of Health and Human Services: Common rule, 45 CFR 46. Federal policy for the protection of human subjects: notices and rules. Federal Register 1991;56:28003–28032.

    External Resources

  29. Cutler NR, Sramek JJ: Guidelines for conducting bridging studies in Alzheimer disease. Alzheimer Dis Assoc Disord 1998;12:88–92.
  30. Lai JM, Karlawish J: Assessing the capacity to make everyday decisions: a guide for clinicians and an agenda for future research. Am J Geriatr Psychiatry 2007;15:101–111.
  31. Lai JM, Cooney LM, Gill TM, Bradley EH, Hawkins KA, Karlawish JH: Evaluating the ability of older persons with cognitive deficits to solve problems in performing their activities of daily living. J Am Geriatr Soc 2007;55:D55.
  32. Marson DC, Earnst KS, Jamil F, Bartolucci A, Harrell LE: Consistency of physicians’ legal standard and personal judgments of competency in patients with Alzheimer’s disease. J Am Geriatr Soc 2000;48:911–918.