Hastings Center Report最新文献

Perceptions of people living with dementia are shaped by a variety of “narratives” produced by medical authorities, family members of people living with dementia, and paid care workers. Narratives often define how a person living with dementia should be treated, with a focus on dignity and personhood. Using data from published medical literature, a discussion board for family caregivers, and participant observation of a memory-care unit of a long-term care facility, this paper compares varying narratives about dementia. The medical literature centers dignity and personhood. However, family members problematize dignity in their constructions of personhood. Meanwhile, paid care workers’ practices complicate both dignity and personhood. This paper argues that we can use sociologist Erving Goffman's concept of sacred selves to overcome the limitations of extant narratives and improve care for people living with dementia.

“Dementia” is a collective term for a group of common, aging-associated, progressively debilitating, ultimately terminal conditions that affect a person's thought, memory, speech, and behavior. Dementia challenges ideas about the self, about social relationships, and about how aging societies should respond to the needs of people living with dementia and to the needs of dementia caregivers. This introduction to a collection of original essays and a roundtable explains how cultural narratives shape the experience of living with dementia, for better or worse. Cultural narratives are stories that a society or cultural group shares to make meaning, and these stories may reveal common values and fears. This introduction offers examples of how cultural narratives work and highlights insights from research by bioethics and humanities scholars and by humanities researchers in the social sciences. This introduction also provides an overview of the collection, which includes pieces that highlight innovative community projects that demonstrate how stories affect public understanding about what it means to live with dementia.

Across aging societies, there's a hunger for real-world examples of what could be better for people living with dementia and for dementia caregivers. This roundtable brought together four innovators in dementia-friendly community initiatives in North America to discuss how researchers and community organizations can collaborate to create opportunities for people living with dementia and to illuminate the crucial role of people living with dementia in identifying what helps them to flourish.

In this essay, I explore the possibility of meaningful communication and genuine connection within dementia-care settings, and particularly among those living with advanced dementia. Drawing on empirical research and informed by the phenomenology of Bernhard Waldenfels, I aim to challenge dominant cultural narratives that reduce dementia-care institutions to places of confinement and loss. I propose an approach that affirms the irreducible otherness of every human being, including persons with dementia. Through case studies and philosophical reflection, I argue that recognizing the strangeness of both the other and the self can open up mutual spaces of encounter. This, in turn, may cultivate an ethos of the senses: a moral attitude rooted in bodily responsiveness, in which all senses are engaged. Such a responsive posture may not only foster more humane and reciprocal relationships within dementia care contexts but also contribute to richer, more nuanced public narratives about what it means to live with dementia.

This essay seeks to foster a dialogue between dementia care and supportive housing by examining how the core values, guiding principles, and practices in supportive housing could respond to unaddressed housing needs of people with dementia. This analysis draws upon documented and anecdotal strategies from supportive housing to move beyond the traditional dichotomy of successful aging in place versus institutionalization in skilled-nursing or memory-care settings. By considering interdisciplinary insights and interventions from mental and behavioral health alongside dementia care, we can identify novel housing options that have the potential to enhance agency, promote autonomy, and facilitate sustained social engagement for people with dementia.

Narrative holds an important place within medicine and medical education, but an uncritical use of narrative can have troubling consequences for the care of patients who have limited or no capacity for self-narration, such as those living with dementia. We argue that the guiding principles in the use of narrative within medicine and medical education must be inclusivity and opportunity. We illustrate how medical training can benefit from a more inclusive definition of narrative, and we present a selection of innovative approaches to narrative coming out of literary studies, narrative gerontology, and medical and health humanities that focus on metaphor, embodied selfhood, and critical methods for teaching narrative in medical education. These approaches provide opportunities for medical and health humanities to shape the use of narrative in clinical spaces in critical ways that include and empower more individuals, including medical professionals.

Conversations about dependency must balance competing concerns too often consolidated into opposing narratives. On the one hand, our cultural premium on autonomy casts dependency as a weakness and a tragedy, if not a moral failing. On the other hand, efforts to resist this dominant narrative reframe dependency as the rule and not the exception. Extending this delicate balancing act to emerging modalities of dementia care poses additional questions. What should we make of apparently increasing levels of dependence on technology, as opposed to on humans? Confronting both the technophobic and technophilic extremes at once––alongside the polarized views of dependency that underlie them––provides us with clearer resources for reformulating narratives about technology in dementia care. What we need is an account of dependence that recognizes its ubiquity and moral significance while also acknowledging that it requires work that is widely devalued and that can exacerbate vulnerabilities.

Does the pursuit of disability justice for people with dementia require that people with dementia personally identify as disabled? On one level, self-representation has been a critical strategy for combating harmful and inaccurate assumptions that people with disabilities or dementia are inherently incapable of self-advocacy. At the same time, disability-rights narratives in which self-representation is fundamental to liberation cannot fully account for the realities of people with advanced dementia or other conditions that profoundly affect cognitive function. This essay argues that bringing disability and dementia advocacy together requires a shift beyond identity-based personal narratives and toward structural narratives that illustrate the processes through which dementia is historically constructed and that imagine alternatives to those processes. Such narratives not only reveal the effects of ableism beyond those who identify as disabled but also illuminate possibilities for resisting harmful structural forces through coalitional organizing and solidarity.

This essay discusses the causes and meaning of dementia for Alaska Native dementia caregivers and Native and non-Native providers from across the state of Alaska. This piece highlights Indigenous concepts of dementia, specifically concerning the causes and meaning of the disease, and how they differ from Western concepts of dementia. The essay encourages an honoring of and respect for the lived experiences of people in Indigenous communities who are living with dementia or caring for those who have dementia. It also highlights both Indigenous and Western systems of knowledge related to dementia and discusses how they can work together to increase awareness, education, and treatment for dementia.

The Hastings Center for Bioethics addresses fundamental ethical and social issues in health care, science, and technology. Through our scholars’ writing and speaking, and through the work of the many other people who participate in our projects or submit articles to our publications, we shape ideas that influence key opinion leaders, including health policy-makers, regulators, lawyers, legislators, and judges. Our analyses also deeply influence professional practice: from end-of-life care to psychiatric practice to immigrant health care, we have helped to shape the standards of practice adopted by physicians, nurses, and lawyers. Founded in 1969 by philosopher Daniel Callahan and psychoanalyst Willard Gaylin, The Hastings Center for Bioethics is the oldest independent, nonpartisan, interdisciplinary research institute of its kind in the world.

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ON THE COVER: Morning in December, by Deidre Scherer, 1996, fabric and thread, 15 × 13 inches.

Courtesy of the artist. dscherer.com