A review of ethical issues in dementia

International Psychogeriatrics

Volumn 27, Issue 10, 2015, Pages 1635-1647

  Johnson, Rebecca A ^a,b   Karlawish, Jason ^b,c  

^a PRINCETON UNIVERSITY   (United States)

^b UNIVERSITY OF PENNSYLVANIA   (United States)

^c UNIVERSITY OF PENNSYLVANIA   (United States)

Author keywords

Alzheimer's disease; dementia; ethics; medical legal issues; stigma

Indexed keywords

ALZHEIMER DISEASE; CAREGIVER SUPPORT; COGNITIVE DEFECT; COST CONTROL; DECISION MAKING; DEMENTIA; ETHICAL DECISION MAKING; HUMAN; HUMAN RIGHTS; INFORMED CONSENT; MACARTHUR COMPETENCY ASSESSMENT TOOL FOR CLINICAL RESEARCH; MEDICAL CARE; MEDICAL ETHICS; PATIENT PREFERENCE; PREVENTION STUDY; RESEARCH; REVIEW; RISK; RISK ASSESSMENT; RISK BENEFIT ANALYSIS; RISK INFORMATION; SEMI STRUCTURED INTERVIEW; SOCIAL DISCRIMINATION; SOCIAL PARTICIPATION; SOCIAL STIGMA; ETHICS; INTERPERSONAL COMMUNICATION; PATIENT CARE; RESEARCH ETHICS;

DEMENTIA; DISCLOSURE; ETHICS, RESEARCH; HUMAN RIGHTS; HUMANS; PATIENT CARE; SOCIAL DISCRIMINATION; SOCIAL STIGMA;

EID: 84948583906     PISSN: 10416102     EISSN: 1741203X     Source Type: Journal    
DOI: 10.1017/S1041610215000848     Document Type: Review

References (83)

1. Appelbaum, P. S. (2002). Involving decisionally impaired subjects in research: the need for legislation. The American Journal of Geriatric Psychiatry, 10, 120-124.
2. Appelbaum, P. S., Bonnie, R. J., & Karlawish, J. H. (2005). The capacity to vote of persons with Alzheimer's disease. American Journal of Psychiatry, 162, 2094-2100.
3. Appelbaum, P. S., & Grisso, T. (2001). MacCAT-CR: MacArthur Competence Assessment Tool for Clinical Research. Sarasota, FL: Professional Resource Press.
4. Appelbaum, P. S., & Roth, L. H. (1982). Competency to consent to research: a psychiatric overview. Archives of General Psychiatry, 39, 951-958.
5. Arias, J. J., & Karlawish, J. (2014). Confidentiality in preclinical Alzheimer disease studies: when research and medical records meet. Neurology, 82, 725-729.
6. Bacon, D., Fisher, R. S., Morris, J. C., Rizzo, M., & Spanaki, M. V. (2007). American academy of neurology position statement on physician reporting of medical conditions that may affect driving competence. Neurology, 68, 1174-1177.
7. Black, B. S., Rabins, P. V., Sugarman, J., & Karlawish, J. H. (2010). Seeking assent and respecting dissent in dementia research. The American Journal of Geriatric Psychiatry, 18, 77-85.
8. Bovbjerg, B. D., & Jenkins, W. O. (2009). Elderly Voters: Information on Promising Practices could Strengthen the Integrity of the Voting Process in Long-Derm care Facilities. Washington, DC: United States Government Accountability Office.
9. Brooker, D. (2003). What is person-centred care in dementia? Reviews in Clinical Gerontology, 13, 215-222.
10. Brown, L. B., & Ott, B. R. (2004). Driving and dementia: a review of the literature. Journal of Geriatric Psychiatry and Neurology, 17, 232-240.
11. Christensen, K. D., Roberts, J. S., Uhlmann, W. R., & Green, R. C. (2011). Changes to perceptions of the pros and cons of genetic susceptibility testing after APOE genotyping for Alzheimer disease risk. Genetics in Medicine, 13, 409-414.
12. Cohen-Mansfield, J., & Werner, P. (1998). The effects of an enhanced environment on nursing home residents who pace. The Gerontologist, 38, 199-208.
13. Crystal, S., Olfson, M., Huang, C., Pincus, H., & Gerhard, T. (2009). Broadened use of atypical antipsychotics: safety, effectiveness, and policy challenges. Health Affairs, 28, w770-w781.
14. Department of Health and Human Services (2009). Common Rule, 45 CFR 46. Basic HHS Policy for the Protection of Human Research Subjects.
15. Doe, v Rowe (2001). 156 F Suppl 2d 35 (D Me 2001).
16. Drachman, D. A., & Swearer, J. M. (1993). Driving and Alzheimer's disease: the risk of crashes, Neurology, 43, 2448-2456.
17. Dresser, R. (1986). Life, death, and incompetent patients: conceptual infirmities and hidden values in the law. Arizona Law Review, 28, 373-405.
18. Dubinsky, R. M., Stein, A. C., & Lyons, K. (2000). Practice parameter: risk of driving and Alzheimer's disease (an evidence-based review): report of the quality standards subcommittee of the American Academy of Neurology. Neurology, 54, 2205-2211.
19. Dubois, B., et al. (2014). Advancing research diagnostic criteria for Alzheimer's disease: the IWG-2 criteria. Lancet Neurology, 13, 614-629.
20. Dvoskin, R., & Kaufman, D. (2011). Tables of Direct-Do-Consumer Genetic Testing Companies and Conditions Tested. Washington, DC: Genetics and Public Policy Center.
21. Dworkin, R. (1993). Life's Dominion: An Argument About Abortion, Euthanasia, and Individual Freedom. New York: Vintage.
22. Eckenwiler, L. A. (2009). Care worker migration and transnational justice. Public Health Ethics, 2, 171-183.
23. Edvardsson, D, Winblad, B., & Sandman, P. (2008). Person-centred care of people with severe Alzheimer's disease: current status and ways forward. The Lancet Neurology, 7, 362-367.
24. Emanuel, E. J., Wendler, D., & Grady, C. (2000). What makes clinical research ethical? JAMA, 283, 2701-2711.
25. Gjerdingen, D. K., et al. (1999). Older persons' opinions about life-sustaining procedures in the face of dementia. Archives of Family Medicine, 8, 421.
26. Green, R. C., et al. (2009). Disclosure of APOE genotype for risk of Alzheimer's disease. NEJM, 361, 245-254.
27. Grill, J. D., Karlawish, J., Elashoff, D., & Vickrey, B. G. (2013). Risk disclosure and preclinical Alzheimer's disease clinical trial enrollment. Alzheimer's & Dementia, 9, 356-359.
28. Hirschman, K. B., Joyce, C. M., James, B. D., Xie, S. X., & Karlawish, J. H. T. (2005). Do Alzheimer's disease patients want to participate in a treatment decision, and would their caregivers let them? The Gerontologist, 45, 381-388.
29. Jaworska, A. (1999). Respecting the margins of agency: Alzheimer's patients and the capacity to value. Philosophy & Public Affairs, 28, 105-138.
30. John, S. (2014). Patient preference predictors, apt categorization, and respect for autonomy. Journal of Medicine and Philosophy, 39, 169-177.
31. Johnson, R., Harkins, K., Cary, M., Sankar, P., & Karlawish, J. H. T. (2014). Public Fear, Sympathy, and Discrimination towards Persons with Alzheimer's Disease: The Forward-Looking Nature of Stigma and Implications for Anti-Stigma Interventions. Presented at the 142nd APHA Annual Meeting and Exposition (November 15-November 19, 2014), APHA, available at: https://apha.confex.com/apha/142am/webprogram/Paper306335.html; accessed 7 July 2014.
32. Jongsma, K., & Vathorst, S. (2015). Advance directives in dementia research: The opinions and arguments of clinical researchers-An empirical study. Research Ethics, 11, 4-14.
33. Karlawish, J. (2003). Research involving cognitively impaired adults. NEJM, 348, 1389-1392.
34. Karlawish, J. (2010). Desktop medicine. JAMA, 304, 2061-2062.
35. Karlawish, J. (2014). How are we going to live with Alzheimer's disease? Health Affairs, 33, 541-546.
36. Karlawish, J. H. T., et al. (2004). Addressing the ethical, legal, and social issues raised by voting by persons with dementia. JAMA, 292, 1345-1350.
37. Karlawish, J., Kim, S. Y. H., Knopman, D., Dyck, C., & James, B. D. (2008a). Interpreting the Clinical Significance of Capacity Scores for Informed Consent in Alzheimer Disease Clinical Trials. American Journal of Geriatric Psychiatry, 16, 568-574.
38. Karlawish, J. H. T., et al. (2008b). Identifying the barriers and challenges to voting by residents in nursing homes and assisted living settings. Journal of Aging & Social Policy, 20, 65-79.
39. Karlawish, J. H. T., Casarett, D. J., & James, B. D. (2002). Alzheimer's disease patients' and caregivers' capacity, competency, and reasons to enroll in an early-phase Alzheimer's disease clinical trial. Journal of the American Geriatrics Society, 50, 2019-2024.
40. Karlawish, J. H. T., Casarett, D. J., James, B. D., Xie, S. X., & Kim, S. Y. H. (2005). The ability of persons with Alzheimer disease (AD) to make a decision about taking an AD treatment. Neurology, 64, 1514-1519.
41. Karlawish, J. H. T., Kim, S. Y. H., Knopman, D., van Dyck, C. H., James, B. D., & Marson, D. (2008). Interpreting the clinical significance of capacity scores for informed consent in Alzheimer disease clinical trials. The American Journal of Geriatric Psychiatry, 16, 568-574.
42. Karlawish, J. H. T., Rubright, J., Casarett, D., Cary, M., Ten Have, T., & Sankar, P. (2009). Older adults' attitudes toward enrollment of non-competent subjects participating in Alzheimer's research. American Journal of Psychiatry, 166, 182-188.
43. Karlawish, J. H. T., Sabatino, C., Markowitz, D., Rubright, J., Klem, E., & Boruch, R. F. (2011). Bringing the vote to the residents of long-Derm care facilities: a study of the benefits and challenges of mobile polling. Election Law Journal, 10, 5-14.
44. Kim, S. Y. H. (2010). Evaluation of Capacity to Consent to Treatment and Research. New York, NY: Oxford University Press.
45. Kim, S. Y. H. (2011). The ethics of informed consent in Alzheimer disease research. Nature Reviews Neurology, 7, 410-414.
46. Kim, S. Y. H. (2014). Improving medical decisions for incapacitated persons: does focusing on 'accurate predictions' lead to an inaccurate picture? Journal of Medicine and Philosophy, 39, 187-195.
47. Kim, S. Y. H., & Caine, E. D. (2002). Utility and limits of the mini mental state examination in evaluating consent capacity in Alzheimer's disease. Psychiatric Services, 53, 1322-1324.
48. Kim, S. Y. H., Caine, E. D., Currier, G. W., Leibovici, A., & Ryan, J. M. (2001). Assessing the competence of persons with Alzheimer's disease in providing informed consent for participation in research. American Journal of Psychiatry, 158, 712-717.
49. Kim, S. Y. H., Caine, E. D., Swan, J. G., & Appelbaum, P. S. (2006). Do clinicians follow a risk-sensitive model of capacity-determination? An experimental video survey. Psychosomatics, 47, 325-329.
50. Kim, S. Y. H., Karlawish, J. H., Kim, H., 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, 68, 214-219.
51. Kim, S. Y. H., Kim, H. M., Langa, K. M., Karlawish, J. H. T., Knopman, D. S., & Appelbaum, P. S. (2009). Surrogate consent for dementia research A national survey of older Americans. Neurology, 72, 149-155.
52. Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13-22.
53. Kontos, P. C. (2005). Embodied selfhood in Alzheimer's disease Rethinking person-centred care. Dementia, 4, 553-570.
54. Kostiuk, S. A. (2012). After GINA, NINA-neuroscience-based discrimination in the workplace. Vanderbilt Law Review, 65, 934-977.
55. Leon, J., Cheng, C. K., & Neumann, P. J. (1998). Alzheimer's disease care: costs and potential savings. Health Affairs, 17, 206-216.
56. Levitsky, S. R. (2010). Caregiving and the construction of political claims for long-Derm care reform. In R. B. Hudson (ed.), The New Politics of Old Age Policy (pp. 208-230). Baltimore: Johns Hopkins University Press.
57. Lucas-Blaustein, M. J., Filipp, L., Dungan, C., & Tune, L. (1988). Driving in patients with dementia. Journal of the American Geriatrics Society, 36, 1087-1091.
58. Menzel, P. T., & Chandler-Cramer, M. C. (2014). Advance Directives, Dementia, and Withholding Food and Water by Mouth. Hastings Center Report, 44, 23-37.
59. Nuffield Council on Bioethics (2010). Medical Profiling and Online Medicine: the Ethics of 'Personalised Healthcare' in a Consumer Age (pp. 1-248). London, UK: Nuffield Council on Bioethics.
60. O'Connell, G., et al. (2011). The brain, the science and the media. EMBO Reports, 12, 630-636.
61. Ory, M. G., Hoffman, R. R., Yee, J. L., Tennstedt, S., & Schulz, R. (1999). Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. The Gerontologist, 39, 177-185.
62. Peters, K. R., Lynn Beattie, B., Feldman, H. H., & Illes, J. (2013). A conceptual framework and ethics analysis for prevention trials of Alzheimer Disease. Progress in Neurobiology, 110, 114-123.
63. Pierce, R. (2010). A changing landscape for advance directives in dementia research. Social Science & Medicine, 70, 623-630.
64. Presidential Commission for the Study of Bioethical Issues (2014). Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society. Washington, DC: U.S. Department of Health and Human Services.
65. Prince, A. E. R., & Berkman, B. E. (2012). When does an illness begin: genetic discrimination and disease manifestation. The Journal of Law, Medicine & Ethics, 40, 655-664.
66. Ragland, D. R., Satariano, W. A., & MacLeod, K. E. (2005). Driving cessation and increased depressive symptoms. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 60, 399-403.
67. Rice, D. P., et al. (1993). The economic burden of Alzheimer's disease care. Health Affairs, 12, 164-176.
68. Rid, A., & Wendler, D. (2014). Use of a patient preference predictor to help make medical decisions for incapacitated patients. Journal of Medicine and Philosophy, 39, 104-129.
69. Saks, E. R., Litt, M., Dunn, L. B., & Wimer, J. (2008). Proxy consent to research: the legal landscape. Yale Journal of Health Policy, Law, and Ethics, 8, 37.
70. Schulz, R., O'Brien, A. T., Bookwala, J., & Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. The Gerontologist, 35, 771-791.
71. Shulman, M. B., Harkins, K., Green, R. C., & Karlawish, J. (2013). Using AD biomarker research results for clinical care: a survey of ADNI investigators. Neurology, 81, 1114-1121.
72. Sperling, R. A., Karlawish, J., & Johnson, K. A. (2013). Preclinical Alzheimer's disease-Dhe challenges ahead. Nature Reviews Neurology, 9, 54-58.
73. Sperling, R. A., et al. (2011). Toward defining the preclinical stages of Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimer's & Dementia, 7, 280-292.
74. Sperling, R. A., et al. (2014). The A4 study: stopping AD before symptoms begin? Science Translational Medicine, 6, 228fs13.
75. Strech, D., Mertz, M., Knuppel, H., Neitzke, G., & Schmidhuber, M. (2013). The full spectrum of ethical issues in dementia care: systematic qualitative review. The British Journal of Psychiatry, 202, 400-406.
76. Sugarman, J., Cain, C., Wallace, R., & Welsh-Bohmer, K. A. (2001). How proxies make decisions about research for patients with Alzheimer's disease. Journal of the American Geriatrics Society, 49, 1110-1119.
77. Taylor, D. H., et al. (2010). Genetic testing for Alzheimer's and long-Derm care insurance. Health Affairs, 29, 102-108.
78. Treloar, A., et al. (2010). Ethical dilemmas: should antipsychotics ever be prescribed for people with dementia? The British Journal of Psychiatry, 197, 88-90.
79. Volicer, L., & Simard, J. (2015). Palliative care and quality of life for people with dementia: medical and psychosocial interventions. International Psychogeriatrics, Epub ahead of print, 1-12.
80. Wendler, D., Martinez, R. A., Fairclough, D., Sunderland, T., & Emanuel, E. (2002). Views of potential subjects toward proposed regulations for clinical research with adults unable to consent. American Journal of Psychiatry, 159, 585-591.
81. Wendler, D., & Prasad, K. (2001). Core safeguards for clinical research with adults who are unable to consent. Annals of Internal Medicine, 135, 514-523.
82. Werner, P. (2006). Lay perceptions regarding the competence of persons with Alzheimer's disease. International Journal of Geriatric Psychiatry, 21, 674-680.
83. Zelizer, V. (2010). Economic Lives: How Culture Shapes Economy. Princeton, NJ: Princeton University Press.