Hostname: page-component-cd9895bd7-lnqnp Total loading time: 0 Render date: 2024-12-18T11:23:21.140Z Has data issue: false hasContentIssue false
  • English
  • Français

A review of ethical issues in dementia

Published online by Cambridge University Press:  10 June 2015

Rebecca A. Johnson  and
Jason Karlawish
Rebecca A. Johnson
Affiliation:
Department of Sociology, Princeton University, 106 Wallace Hall, Princeton, New Jersey, USA
Jason Karlawish*
Affiliation:
Department of Medicine, Perelman School of Medicine, University of Pennsylvania, 3615 Chestnut Street, Philadelphia, Pennsylvania, USA Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA
*
Correspondence should be addressed to: Department of Medicine, Perelman School of Medicine, University of Pennsylvania, 3615 Chestnut Street, Philadelphia, PA 19104, USA. Phone: 215-898-8997; Fax: 215-573-8684. Email: [email protected].
Get access

Abstract

Dementia raises many ethical issues. The present review, taking note of the fact that the stages of dementia raise distinct ethical issues, focuses on three issues associated with stages of dementia's progression: (1) how the emergence of preclinical and asymptomatic but at-risk categories for dementia creates complex questions about preventive measures, risk disclosure, and protection from stigma and discrimination; (2) how despite efforts at dementia prevention, important research continues to investigate ways to alleviate clinical dementia's symptoms, and requires additional human subjects protections to ethically enroll persons with dementia; and (3) how in spite of research and prevention efforts, persons continue to need to live with dementia. This review highlights two major themes. First is how expanding the boundaries of dementias such as Alzheimer's to include asymptomatic but at-risk persons generate new ethical questions. One promising way to address these questions is to take an integrated approach to dementia ethics, which can include incorporating ethics-related data collection into the design of a dementia research study itself. Second is the interdisciplinary nature of ethical questions related to dementia, from health policy questions about insurance coverage for long-term care to political questions about voting, driving, and other civic rights and privileges to economic questions about balancing an employer's right to a safe and productive workforce with an employee's rights to avoid discrimination on the basis of their dementia risk. The review highlights these themes and emerging ethical issues in dementia.

Keywords

Alzheimer’s diseasedementiaethicsmedical-legal issuesstigma
Type
Review Article
Information
International Psychogeriatrics , Volume 27 , Special Issue 10: Psychosocial and Ethical Aspects of Dementia , October 2015 , pp. 1635 - 1647
Copyright
Copyright © International Psychogeriatric Association 2015 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Appelbaum, P. S. (2002). Involving decisionally impaired subjects in research: the need for legislation. The American Journal of Geriatric Psychiatry, 10, 120–124.CrossRefGoogle ScholarPubMed
Appelbaum, P. S., Bonnie, R. J. and Karlawish, J. H. (2005). The capacity to vote of persons with Alzheimer's disease. American Journal of Psychiatry, 162, 2094–2100.CrossRefGoogle ScholarPubMed
Appelbaum, P. S. and Grisso, T. (2001). MacCAT-CR: MacArthur Competence Assessment Tool for Clinical Research. Sarasota, FL: Professional Resource Press.Google Scholar
Appelbaum, P. S. and Roth, L. H. (1982). Competency to consent to research: a psychiatric overview. Archives of General Psychiatry, 39, 951–958.CrossRefGoogle ScholarPubMed
Arias, J. J. and Karlawish, J. (2014). Confidentiality in preclinical Alzheimer disease studies: when research and medical records meet. Neurology, 82, 725–729.CrossRefGoogle ScholarPubMed
Bacon, D., Fisher, R. S., Morris, J. C., Rizzo, M. and 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.CrossRefGoogle ScholarPubMed
Black, B. S., Rabins, P. V., Sugarman, J. and Karlawish, J. H. (2010). Seeking assent and respecting dissent in dementia research. The American Journal of Geriatric Psychiatry, 18, 77–85.CrossRefGoogle ScholarPubMed
Bovbjerg, B. D. and Jenkins, W. O. (2009). Elderly Voters: Information on Promising Practices could Strengthen the Integrity of the Voting Process in Long-Term care Facilities. Washington, DC: United States Government Accountability Office.Google Scholar
Brooker, D. (2003). What is person-centred care in dementia? Reviews in Clinical Gerontology, 13, 215–222.CrossRefGoogle Scholar
Brown, L. B. and Ott, B. R. (2004). Driving and dementia: a review of the literature. Journal of Geriatric Psychiatry and Neurology, 17, 232–240.CrossRefGoogle ScholarPubMed
Christensen, K. D., Roberts, J. S., Uhlmann, W. R. and 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.CrossRefGoogle ScholarPubMed
Cohen-Mansfield, J. and Werner, P. (1998). The effects of an enhanced environment on nursing home residents who pace. The Gerontologist, 38, 199–208.CrossRefGoogle ScholarPubMed
Crystal, S., Olfson, M., Huang, C., Pincus, H. and Gerhard, T. (2009). Broadened use of atypical antipsychotics: safety, effectiveness, and policy challenges. Health Affairs, 28, w770–w781.CrossRefGoogle ScholarPubMed
Department of Health and Human Services (2009). Common Rule, 45 CFR 46. Basic HHS Policy for the Protection of Human Research Subjects.Google Scholar
Doe, v Rowe (2001). 156 F Suppl 2d 35 (D Me 2001).CrossRefGoogle Scholar
Drachman, D. A. and Swearer, J. M. (1993). Driving and Alzheimer's disease: the risk of crashes, Neurology, 43, 2448–2456.CrossRefGoogle ScholarPubMed
Dresser, R. (1986). Life, death, and incompetent patients: conceptual infirmities and hidden values in the law. Arizona Law Review, 28, 373–405.Google ScholarPubMed
Dubinsky, R. M., Stein, A. C. and 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.CrossRefGoogle Scholar
Dubois, B.et al. (2014). Advancing research diagnostic criteria for Alzheimer's disease: the IWG-2 criteria. Lancet Neurology, 13, 614–629.CrossRefGoogle ScholarPubMed
Dvoskin, R. and Kaufman, D. (2011). Tables of Direct-to-Consumer Genetic Testing Companies and Conditions Tested. Washington, DC: Genetics and Public Policy Center.Google Scholar
Dworkin, R. (1993). Life's Dominion: An Argument About Abortion, Euthanasia, and Individual Freedom. New York: Vintage.Google Scholar
Eckenwiler, L. A. (2009). Care worker migration and transnational justice. Public Health Ethics, 2, 171–183.CrossRefGoogle Scholar
Edvardsson, D, Winblad, B. and Sandman, P. (2008). Person-centred care of people with severe Alzheimer's disease: current status and ways forward. The Lancet Neurology, 7, 362–367.CrossRefGoogle ScholarPubMed
Emanuel, E. J., Wendler, D. and Grady, C. (2000). What makes clinical research ethical? JAMA, 283, 2701–2711.CrossRefGoogle ScholarPubMed
Gjerdingen, D. K.et al. (1999). Older persons’ opinions about life-sustaining procedures in the face of dementia. Archives of Family Medicine, 8, 421.CrossRefGoogle ScholarPubMed
Green, R. C.et al. (2009). Disclosure of APOE genotype for risk of Alzheimer's disease. NEJM, 361, 245–254.CrossRefGoogle ScholarPubMed
Grill, J. D., Karlawish, J., Elashoff, D. and Vickrey, B. G. (2013). Risk disclosure and preclinical Alzheimer's disease clinical trial enrollment. Alzheimer's & Dementia, 9, 356–359.CrossRefGoogle ScholarPubMed
Hirschman, K. B., Joyce, C. M., James, B. D., Xie, S. X. and 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.CrossRefGoogle Scholar
Jaworska, A. (1999). Respecting the margins of agency: Alzheimer's patients and the capacity to value. Philosophy & Public Affairs, 28, 105–138.CrossRefGoogle ScholarPubMed
John, S. (2014). Patient preference predictors, apt categorization, and respect for autonomy. Journal of Medicine and Philosophy, 39, 169–177.CrossRefGoogle ScholarPubMed
Johnson, R., Harkins, K., Cary, M., Sankar, P. and 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.Google Scholar
Jongsma, K. and Vathorst, S. (2015). Advance directives in dementia research: The opinions and arguments of clinical researchers – an empirical study. Research Ethics, 11, 4–14.CrossRefGoogle Scholar
Karlawish, J. (2003). Research involving cognitively impaired adults. NEJM, 348, 1389–1392.CrossRefGoogle ScholarPubMed
Karlawish, J. (2010). Desktop medicine. JAMA, 304, 2061–2062.CrossRefGoogle ScholarPubMed
Karlawish, J. (2014). How are we going to live with Alzheimer's disease?. Health Affairs, 33, 541–546.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Karlawish, J., Kim, S. Y. H., Knopman, D., Dyck, C. and 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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Karlawish, J. H. T., Casarett, D. J. and 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.CrossRefGoogle Scholar
Karlawish, J. H. T., Casarett, D. J., James, B. D., Xie, S. X. and 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.CrossRefGoogle ScholarPubMed
Karlawish, J. H. T., Kim, S. Y. H., Knopman, D., van Dyck, C. H., James, B. D. and 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.CrossRefGoogle ScholarPubMed
Karlawish, J. H. T., Rubright, J., Casarett, D., Cary, M., Ten Have, T. and Sankar, P. (2009). Older adults’ attitudes toward enrollment of non-competent subjects participating in Alzheimer's research. American Journal of Psychiatry, 166, 182–188.CrossRefGoogle ScholarPubMed
Karlawish, J. H. T., Sabatino, C., Markowitz, D., Rubright, J., Klem, E. and Boruch, R. F. (2011). Bringing the vote to the residents of long-term care facilities: a study of the benefits and challenges of mobile polling. Election Law Journal, 10, 5–14.CrossRefGoogle Scholar
Kim, S. Y. H. (2010). Evaluation of Capacity to Consent to Treatment and Research. New York, NY: Oxford University Press.Google Scholar
Kim, S. Y. H. (2011). The ethics of informed consent in Alzheimer disease research. Nature Reviews Neurology, 7, 410–414.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Kim, S. Y. H. and 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.CrossRefGoogle ScholarPubMed
Kim, S. Y. H., Caine, E. D., Currier, G. W., Leibovici, A. and 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.CrossRefGoogle ScholarPubMed
Kim, S. Y. H., Caine, E. D., Swan, J. G. and Appelbaum, P. S. (2006). Do clinicians follow a risk-sensitive model of capacity-determination? An experimental video survey. Psychosomatics, 47, 325–329.CrossRefGoogle ScholarPubMed
Kim, S. Y. H., Karlawish, J. H., Kim, H., Wall, I. F., Bozoki, A. C. and 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.CrossRefGoogle ScholarPubMed
Kim, S. Y. H., Kim, H. M., Langa, K. M., Karlawish, J. H. T., Knopman, D. S. and Appelbaum, P. S. (2009). Surrogate consent for dementia research A national survey of older Americans. Neurology, 72, 149–155.CrossRefGoogle ScholarPubMed
Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13–22.CrossRefGoogle Scholar
Kontos, P. C. (2005). Embodied selfhood in Alzheimer's disease Rethinking person-centred care. Dementia, 4, 553–570.CrossRefGoogle Scholar
Kostiuk, S. A. (2012). After GINA, NINA - neuroscience-based discrimination in the workplace. Vanderbilt Law Review, 65, 934–977.Google Scholar
Leon, J., Cheng, C. K. and Neumann, P. J. (1998). Alzheimer's disease care: costs and potential savings. Health Affairs, 17, 206–216.CrossRefGoogle ScholarPubMed
Levitsky, S. R. (2010). Caregiving and the construction of political claims for long-term care reform. In Hudson, R. B. (ed.), The New Politics of Old Age Policy (pp. 208–230). Baltimore: Johns Hopkins University Press.Google Scholar
Lucas-Blaustein, M. J., Filipp, L., Dungan, C. and Tune, L. (1988). Driving in patients with dementia. Journal of the American Geriatrics Society, 36, 1087–1091.CrossRefGoogle ScholarPubMed
Menzel, P. T. and Chandler-Cramer, M. C. (2014). Advance Directives, Dementia, and Withholding Food and Water by Mouth. Hastings Center Report, 44, 23–37.CrossRefGoogle ScholarPubMed
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.Google Scholar
O’Connell, G.et al. (2011). The brain, the science and the media. EMBO Reports, 12, 630–636.CrossRefGoogle ScholarPubMed
Ory, M. G., Hoffman, R. R., Yee, J. L., Tennstedt, S. and Schulz, R. (1999). Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. The Gerontologist, 39, 177–185.CrossRefGoogle ScholarPubMed
Peters, K. R., Lynn Beattie, B., Feldman, H. H. and Illes, J. (2013). A conceptual framework and ethics analysis for prevention trials of Alzheimer Disease. Progress in Neurobiology, 110, 114–123.CrossRefGoogle ScholarPubMed
Pierce, R. (2010). A changing landscape for advance directives in dementia research. Social Science & Medicine, 70, 623–630.CrossRefGoogle ScholarPubMed
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.Google Scholar
Prince, A. E. R. and Berkman, B. E. (2012). When does an illness begin: genetic discrimination and disease manifestation. The Journal of Law, Medicine & Ethics, 40, 655–664.CrossRefGoogle ScholarPubMed
Ragland, D. R., Satariano, W. A. and MacLeod, K. E. (2005). Driving cessation and increased depressive symptoms. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 60, 399–403.CrossRefGoogle ScholarPubMed
Rice, D. P.et al. (1993). The economic burden of Alzheimer's disease care. Health Affairs, 12, 164–176.CrossRefGoogle ScholarPubMed
Rid, A. and 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.CrossRefGoogle ScholarPubMed
Saks, E. R., Litt, M., Dunn, L. B. and Wimer, J. (2008). Proxy consent to research: the legal landscape. Yale Journal of Health Policy, Law, and Ethics, 8, 37.Google ScholarPubMed
Schulz, R., O’Brien, A. T., Bookwala, J. and Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. The Gerontologist, 35, 771–791.CrossRefGoogle ScholarPubMed
Shulman, M. B., Harkins, K., Green, R. C. and Karlawish, J. (2013). Using AD biomarker research results for clinical care: a survey of ADNI investigators. Neurology, 81, 1114–1121.CrossRefGoogle Scholar
Sperling, R. A., Karlawish, J. and Johnson, K. A. (2013). Preclinical Alzheimer's disease—the challenges ahead. Nature Reviews Neurology, 9, 54–58.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Sperling, R. A.et al. (2014). The A4 study: stopping AD before symptoms begin? Science Translational Medicine, 6, 228fs13.CrossRefGoogle ScholarPubMed
Strech, D., Mertz, M., Knüppel, H., Neitzke, G. and Schmidhuber, M. (2013). The full spectrum of ethical issues in dementia care: systematic qualitative review. The British Journal of Psychiatry, 202, 400–406.CrossRefGoogle ScholarPubMed
Sugarman, J., Cain, C., Wallace, R. and 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.CrossRefGoogle ScholarPubMed
Taylor, D. H.et al. (2010). Genetic testing for Alzheimer's and long-term care insurance. Health Affairs, 29, 102–108.CrossRefGoogle ScholarPubMed
Treloar, A.et al. (2010). Ethical dilemmas: should antipsychotics ever be prescribed for people with dementia? The British Journal of Psychiatry, 197, 88–90.CrossRefGoogle ScholarPubMed
Volicer, L. and 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.CrossRefGoogle Scholar
Wendler, D., Martinez, R. A., Fairclough, D., Sunderland, T. and 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.CrossRefGoogle ScholarPubMed
Wendler, D. and Prasad, K. (2001). Core safeguards for clinical research with adults who are unable to consent. Annals of Internal Medicine, 135, 514–523.CrossRefGoogle ScholarPubMed
Werner, P. (2006). Lay perceptions regarding the competence of persons with Alzheimer's disease. International Journal of Geriatric Psychiatry, 21, 674–680.CrossRefGoogle ScholarPubMed
Zelizer, V. (2010). Economic Lives: How Culture Shapes Economy. Princeton, NJ: Princeton University Press.Google Scholar