Hastings Center Report最新文献

{"title":"Unfolding Hidden Narratives: Glimpses of an Ethos of Senses in a Dementia-Care Facility","authors":"Els van Wijngaarden","doi":"10.1002/hast.4990","DOIUrl":"10.1002/hast.4990","url":null,"abstract":"<p>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 <i>ethos of the senses</i>: 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.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"55 S1","pages":"S34-S40"},"PeriodicalIF":2.3,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4990","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145088443","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Supportive Housing as a Promising Practice for People with Dementia","authors":"Ian M. Johnson","doi":"10.1002/hast.5002","DOIUrl":"10.1002/hast.5002","url":null,"abstract":"<p>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.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"55 S1","pages":"S117-S120"},"PeriodicalIF":2.3,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.5002","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145088459","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Dementia as a Critical Lens on the Role of Narrative in Medical Training and Practice","authors":"Erin Gentry Lamb,&nbsp;Anita Wohlmann","doi":"10.1002/hast.4993","DOIUrl":"10.1002/hast.4993","url":null,"abstract":"<p>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.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"55 S1","pages":"S57-S63"},"PeriodicalIF":2.3,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4993","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145088292","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Managing Dependence: Assistive Technologies in Dementia Care","authors":"Mercer E. Gary","doi":"10.1002/hast.5001","DOIUrl":"10.1002/hast.5001","url":null,"abstract":"<p>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.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"55 S1","pages":"S111-S116"},"PeriodicalIF":2.3,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.5001","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145088417","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"From Self-Advocacy to Solidarity: Narrating Disability and Dementia beyond Personal Identity","authors":"Liz Bowen,&nbsp;Katie Savin","doi":"10.1002/hast.4999","DOIUrl":"10.1002/hast.4999","url":null,"abstract":"<p>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 <i>structural narratives</i> 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.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"55 S1","pages":"S97-S104"},"PeriodicalIF":2.3,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4999","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145088372","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Interweaving Indigenous and Western Concepts of Dementia","authors":"Jordan P. Lewis","doi":"10.1002/hast.4995","DOIUrl":"10.1002/hast.4995","url":null,"abstract":"<p>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.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"55 S1","pages":"S71-S75"},"PeriodicalIF":2.3,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4995","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145088385","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"About The Hastings Center for Bioethics and the Cover Art","authors":"","doi":"10.1002/hast.70012","DOIUrl":"https://doi.org/10.1002/hast.70012","url":null,"abstract":"<p>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.</p><p>For copies of this or other <i>Hastings Center Report</i></p><p>special reports, write or call</p><p>Customer Service</p><p>John Wiley and Sons</p><p>800-835-6770 or <span>[email protected]</span>.</p><p><b>ON THE COVER:</b> <i>Morning in December</i>, by Deidre Scherer, 1996, fabric and thread, 15 × 13 inches.</p><p>Courtesy of the artist. dscherer.com</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"55 S1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.70012","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145101659","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Quest for Cure of “Alzheimer's”: Reimagining the Goal by Changing Culture","authors":"Peter Whitehouse,&nbsp;Daniel R. George,&nbsp;Connor Riegal","doi":"10.1002/hast.4992","DOIUrl":"10.1002/hast.4992","url":null,"abstract":"<p>This essay explores personal and cultural meaning in dementia through the respective stories of biomedicine, public health, and alternative worldviews, using Indigenous perspectives as a critical example. Since Alzheimer's visibility as a biomedical illness intensified in the 1970s, the disease has generated powerful narratives of scientific cure that are now limiting public discourse and appropriate social and ecological action. In this essay, our approach is rooted in the recognition that stories in their many forms (oral, written, embodied, and visual) and their associated metaphors create the semantic webs of words and actions that endow human beings with meaning. New stories from less medicalized spaces can both challenge the often-unrecognized limits and damaging behaviors of profit-driven, scientific reductionism and revitalize public and ecological health approaches based on expanded worldviews of individual, social, environmental, and indeed planetary health.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"55 S1","pages":"S48-S56"},"PeriodicalIF":2.3,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4992","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145088440","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"About the Special Report","authors":"","doi":"10.1002/hast.70014","DOIUrl":"https://doi.org/10.1002/hast.70014","url":null,"abstract":"&lt;p&gt;This special report is the major product of a grant-funded research project of The Hastings Center for Bioethics. The project, The Meanings of Dementia: Interpreting Cultural Narratives of Aging Societies, is part of Bioethics for Aging Societies: The Hastings Center's interdisciplinary exploration of ethical and social challenges arising from population aging. This report follows earlier &lt;i&gt;Hastings Center Report&lt;/i&gt; special reports on social dimensions of aging (“What Makes a Good Life in Late Life? Citizenship and Justice in Aging Societies,” 2018) and on health decision-making and care in the context of dementia (“Facing Dementia: Clarifying End-of-Life Choices, Supporting Better Lives,” 2024). This new report brings together perspectives from bioethics and humanities scholars, humanities researchers in the social sciences, and community-focused social work and nursing researchers to explore how cultural narratives—shared stories that convey and preserve ideas and values—shape public understanding about dementia and shape the lives of people living with dementia and of dementia caregivers.&lt;/p&gt;&lt;p&gt;“Dementia” is a collective term for Alzheimer disease and related dementias, a group of common, aging-associated, progressively debilitating, ultimately terminal conditions that affect people's thoughts, memory, speech, and behavior. A person with dementia will need an increasing amount of care, and many dementia care costs are not covered by health insurers. Dementia challenges ideas about the self, about social relationships, and about how aging societies, whose characteristic features include longer lives and smaller families, can provide care to the millions of people who will certainly need it. By centering the experience of living with dementia, this project considers how cultural narratives can represent people with dementia as fellow citizens, community members, and inhabitants of neighborhoods, not limited to their roles as patients, nor depicted as problems.&lt;/p&gt;&lt;p&gt;Nancy Berlinger and Erin Gentry Lamb codirected this project, and they coedited this report with Kate de Medeiros and Liz Bowen, who also served as the managing editor. Janelle Taylor served as the consulting editor. The editors and authors of this report are solely responsible for the content of this publication.&lt;/p&gt;&lt;p&gt;This report was made possible in part by a 2022 Collaborative Research award by The National Endowment for the Humanities to The Hastings Center. The purpose of this award was to develop the report's manuscripts for publication.&lt;/p&gt;&lt;p&gt;Additional funding supporting publication and dissemination was provided by The Hastings Center through The Gil Omenn and Martha Darling Fund for Trusted and Trustworthy Scientific Innovation.&lt;/p&gt;&lt;p&gt;The authors and editors are grateful to the anonymous peer reviewers of this report, the editorial committee of the &lt;i&gt;Hastings Center Report&lt;/i&gt;, and Sana Baban, who provided research support.&lt;/p&gt;&lt;p&gt;&lt;i&gt;The National Endowment for the Hum","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"55 S1","pages":""},"PeriodicalIF":2.3,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.70014","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145101599","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reliable Narrators of Experience: Rethinking Dementia Narratives from Insider Perspectives","authors":"Kate de Medeiros","doi":"10.1002/hast.4989","DOIUrl":"10.1002/hast.4989","url":null,"abstract":"<p>Cultural narratives about dementia reinforce the idea that people living with the condition are unreliable narrators of their own experiences. Challenges with recall and memory and changes in language that are commonly experienced by people living with dementia become equated to a loss of self. Since language is a shared space where people construct meaning through stories, stories that lack coherence or exhibit broken language are often discounted. To counter the notion that broken narratives reveal broken selves, I present a story by Marlene, a person living with dementia who recalled an encounter with a bobcat while on a camping trip. Rather than considering the veracity of her story, I focus on the importance of the emotions presented—the feeling self. Overall, I argue that by shifting focus from story challenges to expressed emotions, we are better positioned to understand and respect people living with dementia as authorities of their own experiences.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"55 S1","pages":"S29-S33"},"PeriodicalIF":2.3,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4989","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145088424","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}