Americans who are afraid of living for many years with Alzheimer's might seek a way to end their lives early, when their dementia has just entered the moderate phase. There is no legal process for doing so. In this paper I argue that advance directives, in particular, are not a legal solution for those who prefer to die rather than suffer years of dementia. The problem is that an advance directive only works to hasten death when there is a life-threatening (...) illness for which one can refuse treatment; more often than not, Alzheimer's kills the self long before it kills the body. (shrink)

This paper attempts to bring to the attention of the readers a concept that broadens ethical considerations for Alzheimer's disease research. We propose we move away from the ethical paradigm that focuses on avoidance of coercion for participation in studies as well as privacy and safety to a more inclusive paradigm that will not only include the principles outlined above but will also guarantee access to new treatments for individuals that participate in research and other members of society. Specifically, if (...) the research being performed results in a new treatment for Alzheimer's disease, would the individuals participating in the research and other members of their community have access to and benefit from these treatments, given the availability of financial and other resources in the society that will allow for the implementation of these treatments. This paper will propose a model that will facilitate the achievement of these broader ethical considerations. (shrink)

The paper outlines the policy context and summarizes the numerous policy issues that AD raises from the more generic to the unique. It posits that strong public fears of AD and its future prevalence projections and costs, raise increasingly difficult policy dilemmas. After reviewing the costs in human lives and money and discussing the latest U.S. policy initiatives, the paper presents two policy areas as examples the demanding policy decisions we face. The first focuses on the basic regulatory function of (...) protecting the public from those who would exploit these fears. The second centers on the well-debated issues of advance directives and euthanasia that surround AD. Although more dialogue, education and research funding are needed to best serve the interests of AD patients and families as well as society at large, this will be challenging because of the strong feelings and divisions AD engenders. (shrink)

Dance, as aesthetic self-expression, is a unique arts-based program that combines the physical benefits of exercise with psychosocial therapeutic benefits. While dance has also been shown to support empowerment, meaningful self-expression, and pleasurable experience, it is rarely adopted to support these aspects of engagement in the context of dementia care. The instrumental reduction of dance to its application as a therapeutic tool can be traced to the contemporary movement towards cognitive science with an emphasis on embodied cognition. This has effectively (...) elided a consideration of how the body itself, separate and apart from cognition, could be a source of intelligibility, inventiveness, and creativity. We argue for the need to broaden the therapeutic model of dance to more fully support embodied and creative self-expression by persons living with dementia. To achieve this, we explore how a relational model of citizenship that recognizes corporeality and relationality as fundamental to human existence brings a new and critical dimension to understanding the importance of dance in the context of dementia. Drawing on this model, we articulate a new kind of ethic characterized by a pre-reflective intercorporeal sensibility that requires the mobilization of public structures and practices to cultivate a relational environment for individuals living with dementia that supports human flourishing. (shrink)

This article is about the recent and profound changes in the conceptualization of dementia, especially the turn towards prevention. The main argument is that more attention needs to be paid to “situated prevention” — the framing of internationally circulating data on the “new dementia” in different contexts. After introducing some of the more problematic issues related to the “new dementia,” a first comparison of major preventive clinical trials in Europe and in North America will be provided. The major insight stemming (...) from situating the global message of preventing dementia is recognition of the responsibility researchers and policy makers bear with respect to the implicit and potential moral narratives in emerging scientific landscapes. (shrink)

The author recounts her experience as an Alzheimer's care-giver to her mother, stressing the value of her professional background in theater.