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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: Jason.Karlawish@uphs.upenn.edu.
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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 

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