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INTRODUCTION Perspectives on Alzheimer’s Disease:

Ethical, Legal, and Social Issues Robert M. Sade

Alzheimer’s disease (AD) is an irreversible and slowly progressive neurological disease affect- ing virtually all functions of the brain, includ-

ing memory, judgment, personality, rationality, auton- omy, and late in the disease, bodily functions. There is neither a cure nor any effective long-term treatment. Many clues to the cause of AD have been discovered, but ultimately its cause is essentially unknown. The disease is a huge and rapidly growing problem, in eco- nomic, social, and personal terms. In this country, 5 million individuals suffer from AD, and the prevalence increases rapidly after age 65: more than 35% of indi- viduals over the age of 85 have the disease, currently

numbering over 3 million.1 In this country, it is listed by the CDC as the sixth most common cause of death, although estimates of AD deaths are probably grossly underestimated; one study used census data from 2010 to estimate the number of deaths from AD over the age of 65 at 600,000, compared with the CDC count of 83,494, a seven-fold higher number.2 Thus, rather than sixth most common, AD is more likely to be the third most common cause of death in the US.

AD is the most expensive disease in the US, gener- ating a lifetime cost per patient of nearly $330,000. The annual cost nationally for treating AD and other dementias is about $277 billion. Although research has been intense, no cure has been found, most treat- ments are only marginally effective, and without bet- ter treatment, by 2040 we will be spending $1.2-1.6 trillion on care of patients with AD. Because treatment is relatively ineffective, pharmaceutical costs compose but a very small portion of the total expenses gener- ated by the disease.3

Because of the devastating personal effects, par- ticularly on autonomous functioning and decision making, many ethical issues have emerged in recent decades. Broadly speaking, early diagnosis of individ-

Robert M. Sade, M.D., is Distinguished University Profes- sor, Professor of Cardiothoracic Surgery, Director of the In- stitute of Human Values in Health Care, and Director of the South Carolina Clinical and Translational Research Institute (Clinical and Translational Science Award) Clinical Research Ethics Core at the Medical University of South Carolina. He currently chairs the Cardiothoracic Ethics Forum and serves as Associate Editor (Ethics) of the Annals of Thoracic Surgery. He is a former chair of the American Association for Thoracic Surgery Ethics Committee, the Society of Thoracic Surgeon’s Standards and Ethics Committee, and the American Medical Association’s Council on Ethical and Judicial Affairs.

About This Symposium

This symposium issue consists of papers presented at the 23rd Annual Thomas A. Pitts Memorial Lecture- ship in Medical Ethics, April 6, 2017. The endowed lectureship, held annually since 1993, is funded by the Medical University of South Carolina Foundation through a bequest from Dr. Pitts, who served on MUSC’s Board of Trustees for 36 years, including 25 years as its chair. The conference was presented by the Medical University of South Carolina, the Institute of Human Values in Health Care, the South Carolina Clinical and Translational Research Institute, and the Office of Continuing Medical Education of the MUSC College of Medicine.

692 journal of law, medicine & ethics

SYMPOSIUM

uals who are at risk for Alzheimer’s disease generate issues related to prevention, disclosure of diagnostic findings, and the stigma associated with the disease. Research into prevention and treatment have led to the need for special protections for patients with dementia because of their vulnerability to abuse.4

To address some of the many ethical and social issues related to AD, an interdisciplinary group of experts in the field were gathered to present their viewpoints on ethical, legal, and social issues associated with the disease, representing disciplines as diverse as epide- miology, anthropology, philosophy, sociology, political science, and law, as well as the viewpoint of a family caregiver.

Interdisciplinary Viewpoints

Jonathan Haines, a genetic epidemiologist, reviews the prevalence of AD in the elderly and its economic and social costs.5 He describes genetic influences on AD, including mutations and genetic variants that have been found to be associated with the disease, and their relation to anatomical changes in the brain that are probably closely related to functional changes. Despite many advances, the details of the genetic contributions to AD remain cryptic. The disease has devastating effects not only on the victims, but also on their caregivers and family members who bear enor- mous costs of money and time.

Jacobo Mintzer is a research scientist whose main focus is on AD investigations. In his essay he identi- fies what he believes to be the current principal ethi- cal issue related to AD research: protection of subjects who are vulnerable owing to their dementia.6 The ethical problem he sees for the future of AD inves- tigations, however, is the development of methods to ensure that individuals participating as research subjects and others in their communities have access to any effective new treatments that arise from that research. He proposes a model for approaching ethi- cal issues differently by relying on identification of specific biomarkers that will allow focused research

aimed at benefiting specific individuals through tar- geted therapy rather than large groups of those who suffer from dementia.

Annette Leibing, a medical anthropologist currently teaching and doing research in Canada, is concerned that preventive measures in AD are viewed quite dif- ferently in different locations owing to differences in epistemic cultures, and compares the US emphasis on drug therapies for early intervention with the Euro- pean emphasis on lifestyle changes.7 She describes what she calls the “new dementia” as a generally accepted recognition that interventions occur far too late and need to begin earlier, as well as recent

changes in agendas now aiming either toward pre- symptomatic detection by such laboratory findings as biomarkers or toward pre-symptomatic detection by observation of very early symptoms. Early preventive measures are best understood if they are situated in their geo-social and cultural contexts, which she calls “situated prevention.”

Pia Kontos (with her postdoctoral fellow Alisa Grig- orovich) is a rehabilitation scientist working in Toronto who focuses on long-term dementia care that utilizes the arts, such as music and dance, to enrich the lives of people with dementia.8 She describes the use of dance as a therapeutic tool that emphasizes embodied cognition and argues that dance as a form of therapy needs to be more extensively used to help develop creative self-expression in those who live with dementia. Starting with recognition of corporeality and relationality as fundamental aspects of human existence, she argues for a new ethic of pre-reflective intercorporeal sensibility that necessitates develop- ment of public policies designed to create relational environments that permit even severely demented individuals to flourish.

Robert Blank is a political scientist who has a broad interest in public policy, including policy related to the human brain. He attributes difficult policy dilem-

To address some of the many ethical and social issues related to AD, an interdisciplinary group of experts in the field were gathered to present

their viewpoints on ethical, legal, and social issues associated with the disease, representing disciplines as diverse as epidemiology, anthropology,

philosophy, sociology, political science, and law, as well as the viewpoint of a family caregiver.

Sade

mas to widespread fear of AD and anticipated huge increases in prevalence and costs related to the dis- ease.9 He reviews specifically what are the monetary and human costs of AD as well as policy initiatives in this country. He explores two specific areas as examples of policy dilemmas: widely debated ques- tions surrounding advance directives, assisted suicide, and euthanasia, and policies to protect people from exploitation of fear of the disease through unethical practices, such as marketing of AD products and tech- nologies and direct-to-consumer advertising of brain interventions. Any future policy development will be difficult because AD produces very strong emotions and divisions arising from interest group politics.

Dena Davis is an attorney and ethicist who has had a long-time interest in end-of-life issues. She describes the deep-seated fear that most Americans have of AD, leading some to wish their lives to end before they descend into the dementia associated with AD.10 Unfortunately, there is no legal way to accomplish this; under current state laws, an advance directive can hasten death only if a life-sustaining treatment can be discontinued. Moreover, there is a controver- sial philosophical and practical problem with what has been called “prospective autonomy,” in which the person whom one becomes is not the same person who created the advance directive — if that is so, why should such a directive be respected? Thus, advance directives are not useful for shortening one’s life in the face of advancing AD; to achieve that goal legally, the subject must move to one of the few countries where euthanasia is legal.

Elinor Fuchs is not a health care professional, rather, she is a professor of dramaturgy who was the caregiver for her mother during the decade of deepening demen- tia before her mother’s death. In a thoroughly engag- ing essay, she describes the care of an AD patient from the perspective of the caregiver.11 She addresses what she considers to be a central issue of providing such

care, a conflict between what she calls medicalists and humanists — those who work toward a cure versus those who want to advance personhood through vari- ous art forms. [Examples of both approaches can be found elsewhere in this symposium — Ed.] She enters the debate between those who believe caregivers should anchor AD patients in reality and those who believe one should join them in their own worlds. Her engaging story of the giraffe in the hallway provides a persuasive response to that debate.

Note The author has no conflicts of interest to declare.

References 1. J. Haines, “Alzheimer Disease: Perspectives from Epidemiol-

ogy and Genetics,” Journal of Law, Medicine & Ethics 46, no. 3 (2018): 694-698.

2. B. D. James et al., “Contribution of Alzheimer’s Disease to Mortality in the United States,” Neurology 82 (2014): 1045-50.

3. R. H. Blank, “The Economic and Social Costs of Alzheimer’s Disease,” in Social and Public Policy of Alzheimer’s Disease in the United States (Singapore: Palgrave Pivot, Springer Nature, 2018): 34-38.

4. R. A. Johnson and J. Karlawish, “A Review of Ethical Issues in Dementia,” International Psychogeriatrics 27, no. 10 (2015): 1635-1647.

5. See Haines, supra note 1. 6. J. Mintzer, “Perspective from Clinical Research: Ethical Issues

in Alzheimer’s Disease Research,” Journal of Law, Medicine & Ethics 46, no. 3 (2018): 699-703.

7. A. Leibing, “Situated Prevention: Framing the ‘New Demen- tia’,” Journal of Law, Medicine and Ethics 46, no. 3 (2018): 704-716.

8. P. Kontos and A. Gregorovitch, “Integrating Citizenship, Embodiment, and Relationality: Towards a Reconceptualiza- tion of Dance and Dementia in Long-Term Care,” Journal of Law, Medicine & Ethics 46, no. 3 (2018): 717-723.

9. R. H. Blank, “Alzheimer’s Disease — Perspective from Politi- cal Science: Public Policy Issues,” Journal of Law, Medicine & Ethics 46, no. 3 (2018): 724-743.

10. D. S. Davis, “Advance Directives and Alzheimer’s Disease,” Journal of Law, Medicine & Ethics 46, no. 3 (2018): 744-748.

11. E. Fuchs, “What the Theater Taught Me about Alzheimer’s (or: The Giraffe in the Hallway Problem),” Journal of Law, Medicine & Ethics 46, no. 3 (2018): 749-755.

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