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13. The Concept of Alzheimer Disease in a Hypercognitive Society
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13 The Concept of Alzheimer Disease in a Hypercognitive Society Stephen G. Post Is the difference between Alzheimer disease (AD) and the cognitive decline associated with normal aging qualitative or quantitative? Does AD dementia differ from the normal loss of capacities associated with aging only in its order of magnitude? The senile plaques and neuro- fibrillary tangles present in great quantities in the brains of people with AD are also present to a lesser degree in the normal brains of older persons. Would anyone who lives long enough, then, reach that threshold of incapacitation that we define as AD? My comments emerge from a background in moral philosophy and comparative religious ethics. I contextualize the concept of AD within what I have previously called a ‘‘hypercognitive’’ culture and society, in which nothing is as fearful as AD because it violates the spirit (geist) of self-control, independence, economic productivity, and cognitive enhancement that defines our dominant image of human fulfillment. Deep forgetfulness represents such a violation of this spirit that all those with dementia are imperiled. Yet AD is also much more than deep forgetfulness , a term I use to encourage compassion and solidarity; it is human development in reverse, an ‘‘outliving of the brain,’’ and an assault on human dignity. In order to clarify any ambiguity, my interest in the well-being of persons with AD includes a strong recommendation against the use of any life-extending medical treatments (including antibiotics and artifi- 246 Stephen G. Post cial nutrition and hydration) beyond the moderate stage of the disease. Traditional hospice, which developed around the oncology model, is best suited for the patient who is lucid and for whom death is predictably imminent. Unfortunately, only a small number of terminal-stage AD patients are cared for in hospices. We must offer AD patients hospicelevel medical care (including palliation), coupled with special techniques to enhance quality of life, long before the terminal stage of the disease. For patients beyond the moderate stage of AD, optimal care is ‘‘being with’’ rather than ‘‘doing to.’’ Emotional, relational, and aesthetic well-being can be enhanced in a way that involves family members , giving them a sense of meaning and of purpose, and that provides an alternative to preemptive assisted suicide or euthanasia. In the PASSAGES program at Heather Hill, a nursing home in Chardon, Ohio, my colleagues and I advocate a paradigm shift away from the technological protraction of morbidity toward acts of caring solicitude that draw on and support patients’ remaining capacities: healing arts therapies in the categories of the fine arts (music, art, dance/movement, poetry, drama); caring touch (therapeutic touch, massage); and spirituality (ritual based on deeply learned religious backgrounds). Clergypersons from the relevant spiritual traditions are needed to support bereaved family members. They need to understand that their support and caring is often best expressed by entering into the culture of dementia care to facilitate the well-being of loved ones. I recommend this approach to care based on considerations of quality of life (including the burden of technology to the deeply forgetful, who lack insight into its purposes), the prior indications of many persons with AD while competent, and the ‘‘best interests’’ of patients, as discerned by caregivers. In this chapter, I draw out the implications of interpreting AD against the ubiquitous background of a hypercognitive culture. Hypercognitive values blind us to possible approaches to well-being in persons with AD. Ultimately, these values lead us toward the justification of preemptive assisted suicide as the only reasonable solution to dementia —a practice I do not personally condone. THE ELITE EXCLUSIVISM OF THE BIOETHICAL MODEL OF PERSONHOOD Among philosophical bioethicists, hypercognitive values drive the strong modernist trend to deny that people with advanced dementia are [44.197.251.102] Project MUSE (2024-03-19 12:40 GMT) Alzheimer Disease in a Hypercognitive Society 247 ‘‘persons.’’ Instead, they are defined as ‘‘nonpersons’’ because they lack various empowering cognitive capacities. Many but not all bioethicists focus not on what these human beings are, but on what they are not. Such bioethicists will allow that those with severe dementia are still living human beings—but they are not persons, and they therefore lack the moral standing of the cognitively intact. I wish to assert that people with severe dementia are persons, however disabled, weak, and disempowered. In the words of theologian Gilbert Meilaender, ‘‘Those who never had or who have now lost certain distinctive human capacities should not...